Cancer is NOT an Option!

This Saturday is Team Russo's Light The Night Walk 2010

2010-11-01T10:26:00.000-07:00

This Saturday, November 6th is the Boca Raton Light The Night Walk. We will be walking with Team Russo once again.

I would like to take a moment to share an exciting opportunity with you! Whether you have followed my blog or are new, you know that I am a two time survivor of AML Leukemia and a bone marrow transplant. I would like to invite everyone to join my team, "Team Russo" as we Light The Night with The Leukemia & Lymphoma Society this Saturday, November 6, 2010. This year I am the adult honoree and will be speaking at the event. It is a wonderful way to celebrate my "new birthday" of November 13th- which will be exactly one year since my transplant.

The Leukemia & Lymphoma Society's Light The Night Walk is a national fundraising campaign to commemorate and celebrate lives touched by cancer. The unique feature of this walk - it is a 2 mile evening walk! All "Champion For Cures" fundraising participants carry an illuminated balloon during the Walk, red for supporters, white for cancer patients and survivors and a gold for teams walking in memory of a loved one. Prior to the walk, everyone is invited to share in food, live entertainment, children's activities and more! This year's Light The Night Walk will take place on Saturday, November 6th at the Sunset Cove Amphitheater in Boca Raton from 5:00 - 8:00pm. There are two ways in which you can become a part of this magical evening:

Join the "Team Russo" team by becoming a Walker & Fundraiser. If you would like to become a fundraising team member on the team, please visit our Team Page at: http://pages.lightthenight.org/pb/BocaRatn10/TeamRusso and scroll to the "Join Team" section at the bottom of the page. Once you join the Team, you will receive an email from LLS with details on how to login to your personal fundraising website. You may use this site to send out emails to your family and friends, asking them to join the team with you or to make a donation to support your fundraising efforts. You can find useful fundraising tips & information in the "fundraising toolbox" on your website.

There is no registration fee to join Light The Night Walk! LLS does encourage all walkers to become a "Champion For Cures" by fundraising, personally donating or collecting funds to reach the $100 level or higher. As recognition for having $100 or more registered in your personal fundraising account by the Walk, you will receive a commemorative LTN Walk T-Shirt, LTN Illuminated Balloon & Champion For Cures wristband to allow you access to the refreshment area at the Walk. See our ideas on how to raise $100 or more. Please remember, LLS encourages everyone to raise at least $100, however, the more you raise, the more incentives you will earn and the closer you will bring us to a CURE. Visit their website to see a list of fundraising incentives.

Support the "Team Russo" team by making a Donation. If you are unable to attend and participate in the Walk, but would like to make a donation to support the efforts of the team, please visit my website: and click on the "donate now" button to make your donation. All donations are tax-deductible. Every dollar counts, no amount is to small.

The Walks are a means of creating public awareness about blood cancers and their devastating effects on families. Light The Night also raises funds to help support the LLS mission of finding a cure for leukemia, lymphoma, Hodgkin’s disease and myeloma and to improving the quality of life of patients and their families. Please join us as we work toward a CURE! I thank you in advance for your support.

Sincerely,
Kimberly

An over due update

2010-06-24T20:00:00.000-07:00

I apologize for not keeping this blog current or updating in a few months. Since we came home life has been trying to get back to normal and I have sort of stepped away from all things "cancer" or "leukemia" related and sadly that has included blogging. I have started a new post so many times but not finished or published them. It seemed overwhelming to write, which was something new for me, as I do love blogging and it brought me a lot of clarity and sanity on this journey.

I am doing well, I am 7 months post transplant and doing better each day. My energy level is higher, I still fatigue quickly but I can tell the difference from a few months ago. I am no where near my pre transplant or chemo self but I am getting there. Overall since we came home I have been healthy with exception of some minor things. I have had to have my ear drained two times, each time I get a cold it sticks around and eventually I could not hear out of my right ear. I visited an ENT and they drained it both times. They hesitate to put in tubes, which is how to keep it open permanently due to risk of infection and I agree, I don't want them unless this persists. I also had a clogged saliva gland recently. I had never hear of such a thing and thought for sure I my ear was filled up again, but I went and it was my saliva gland. It was extremely painful and my face was completely swollen on the right side, but mostly it was painful. It was about a week before it got better and I hope to never experience that again. I am still on a lot of medicines, the doses change depending on my blood levels at my check ups, but this will continue for a long time. Some days go well and others are very hard to get them all down, but I do the best that I can with it.I am not happy about having to take them, but I try to remember they are keeping me healthy and I need to take them.

We found out one drug that I was taking was making me very ill. I could not eat and it got so bad that I was not eating at all, since my transplant in November I have lost 55 lbs, and I was experiencing vomiting, diarrhea and low white blood counts. It got really bad and something had to change as I was not able to eat at all. We stopped the medicine known to cause this and I immediately stopped vomiting and diarrhea. The eating has been a slow process, a month later I am able to eat now, but limited things, but I can eat and am sure to eat three meals a day. For weeks I lived on smoothies from Jamba Juice and Tropical Smoothie, some days this was all I could get down and I would have two. It is a terrible feeling to have all foods taste so bad you don't want to put them in your mouth and cant bring yourself to do it. Now that I am eating, my weight is stable again.

I have been back to Tampa two times for check ups and both times gotten great results. My bone marrow biopsy shows that I am 100% engrafted with my donors cells. Who could ask for any more than that. I return again at end of August for my 9 month check up.

My family is doing well and keeping me very busy. The kids are out of school for the summer now and having a lot of fun. Christian and Sofia attend summer camp and Olivia is home with me. She needed to get potty trained before she could go to camp. I am proud to say she is now trained and doing great. She attends a class at YMCA two days a week and we do small things to keep busy and she seems very happy. I know that she will enjoy going back in Fall to preschool, she does miss her friends. Life after a transplant is not easy. Not just after a transplant, but cancer I guess. Because my energy level is not where it would normally be, I have a hard time keeping up with them. I still need more rest than I normally would and when I reach a level where I have done to much, I am exhausted till I can catch up. I am an inpatient person, and I like to believe I should be myself, but every day I am reminded daily that I have a new normal and I am going to need to be patient with me and let myself heal. Easier said than done for me.

We moved back home in April and are enjoying living in our house again. After working with a mold expert my pediatrician recommended, we had the house retested and it came back mold free. We did have air duct cleanings and some cleaning things done before we came back home. The reason it tested for mold after all the work we had done last summer they think is because there was residuals in the air conditioning vents and it was blowing around. We had it tested two times and it is clean, so we feel confident that we are OK to move back home. In 9 months we moved our things nine times, that is a lot of moving for one family. It is a great feeling to be living back in our home, with our things and know we are not having to move again. We are grateful we were together over this past year, whether it be in a house, apartment, etc. but we all feel much more at peace being back home, there is no place like it, especially when you do not feel well.

I have had so many supporters of our family throughout this journey over the past year and for that I am very grateful. Thank you for your continued support and prayers. I hope to update more often and not neglect this blog like I have. I feel that I am coming around now and am more ready to talk about what I went through and even reach out to others to help them on their journey. This week I met with two oncology nurse students from a local university, they contacted me through Leukemia and Lymphoma Society, and they wanted to hear my story, my experience. They told me hearing me talk about it, describing what I been through was so helpful to them, they learned more than 10 patients in a hospital setting could tell them. It felt good to help them and realize how blessed I am to be here after all that I have been through.

If you are local sign up and join us for the Light The Night Walk on November 6th. I am the honored patient for the Boca Raton walk and am hoping to get many walkers there for Team Russo and raise a lot of funds for LLS. There is a link on the right side of the blog to click on for registration. It is a nice family centered night and a great way to help others going through cancer.

Home and Light The Night Honoree

2010-02-23T06:45:00.000-08:00

Good morning! It's been awhile since I wrote. We got home on the 12th and been trying since then to return to routine, etc. so there is no time for me and the computer it seems. Its a full time job with the kids, and taking care of myself. I am still diabetic from meds and take so many medicines.

We arrived home and things are going well. The kids have gone back to school and are enjoying it, they are also enjoying seeing friends on weekends. Overall they are adjusting well, sleep is much better and comes easier for them now that they are actually tired and in their own rooms. They started Twae Kon Do yesterday, they loved it. It is alot for me to get them there after school, but Steven meets me after work to help out. Right now we are staying at our friends Natalie and Gene's house, we switched houses. I thought it would be weird, but it really is not. Amazing how you can adapt and live anywhere when you need to. A big thank you to them, there is no way to ever repay you, thank you never seems like enough. Love you guys!

I am exhausted, that really is my only complaint. My body is not ready to do all I am asking it seems. Going back to being a full time Mom, how did I ever do it all before I wonder? I know I will get stronger as the days go on, but it is very frustrating to me to be so weak, I am not used to it. I am listening to my body and napping in the day while they are at school, sit down when my heart is racing, etc. They say it takes a year to get back to yourself, wow I hope that year goes by quick. I feel like the school day goes by so fast and before you know it it is time for pickup already.

In other big and interesting news, I was chosen to be the honoree of the Boca Raton Light the Night Walk in October. I am honored beyond words, this will only happen once in my lifetime. I will attend a few meetings, and speak at kickoff meetings in August, then speak for 1-2 minutes at event. I am really nervous about that, I don't do that well, but I figured I conquered cancer twice, I could do it or try. Our Leukemia and Lymphoma Society is awesome here, Sharon who I keep in touch with is always thinking of me, which I appreciate. So if you are local, when sign ups start, join Team Russo and raise funds and walk with us, without those funds and the research, I would not be here today.

Day 78 ~ Almost Home

2010-01-31T17:49:00.000-08:00

It's been awhile since I updated, there just does not seem like time to sit down and write. We are almost set to go home - February 12 is the day and everyone is excited. Since I last wrote I got an infection in my line in my chest, so I was on antibiotics at home to clear it,then this Friday I got a call the line had to come out immediately, so they took it out and gave me a mid line in my arm since I have no veins in my arms to get blood or receive antibiotics. Well it worked for one day and the second day Steven went to give me my medicine and it leaked everywhere, which resulted in an 11 pm - 2 pm trip to the hospital so I could get my meds. Next day I got a temp line in my neck again. I am getting it out the 8th and getting a port under my skin, needless to say I am tired of this. If all goes well I have to get a pulmonary function test, bone marrow biopsy and my port before I go. In the meantime we are now moved into a Moffit owned furnished apartment, we moved Friday and Saturday, our lease was up on the 1st and they had someone else to rent for a year, so we could not stay the extra 12 days. On the plus all our stuff is packed except clothes and some kitchen stuff, so when we are ready to leave we just turn in the keys and leave,everything was included in the rent. Amazing how much stuff we brought and then add Christmas and little things you purchase,

Everyone is ready to get back to Boca. We have solved our living situation although we have to move twice, but we are lucky to have good friends helping us out and we are blessed for both sets of them.

It's been a long time - long update

2010-01-18T08:21:00.000-08:00

Wow, its been a long time since I have posted. A combination of alot of things, things at home are busy with the kids and there is no time it seems to get on the computer. Right now my days are spent focusing on taking my pills and resting, homeschooling the kids, going to the clinic for appts, I am down to going Monday for blood and Tuesday to see the doctor only. I am sad to say I have had two set backs that have landed me back in the hospital. Jan 6 I believe and right now I am here. I was just feeling more fatigued than normal and both times after I woke up from a nap I had a fever. Fever means you go to clinic immediately, where they take blood cultures and start iv antibiotics. Well it happened again yesterday morning so I spent last night and I will stay today, if no more fever I can go home tomorrow. They believe I have a urinary tract infection, i have no symptoms though due to the immuno suppressing drugs I take. It is scary not to know something that can make me so sick. My immune system is so weak I am so susceptible to everything and anything. Keeping infection free is a full time job.

Other than the fever and having to be here for antibiotics they are still very pleased with my progress, they say this is normal and I have had minimal complications for a transplant patient. I fight fatigue something terrible, but it is going to take 6 months to a year to feel like myself. I have a lot of work to do to build up my strength again, besides chemo and radiation and transplant zapping it, I am still taking prednisone and that makes you tired and loose strength. I am being weaned slowly so by end of February hopefully I will be done and then the medically induced diabetes will go away too.

We have been told that we can go home on Feb 12, which is day 90. I am getting my hickman catheter out and a port put in soon, and I have some tests to have and a bone marrow biopsy before we can go and those are being scheduled, but we are going to be ready to go on the 12th. Everyone is more than ready, we been here since I think November 3. We are ready to put the kids in school and start back to a daily routine. It is lonely in a town where you don't know anyone, we have done well, but we are done now and ready to get back to friends and family.

The very hardest part is when we go home we can not go home to our house. If you remember we had toxic mold in our home, we spent the summer fixing and re mediating the house. Long story short is that they did not fix the house and all the mold is still there. The help that we have fighting to fix it thinks we have a bigger problem which is why the mold was there in the first place and they think we have a sinkhole under the house or foundation issues, which is what was thought from the beginning. So since we have mold and I have no immune system, I cant even go into the house. It is an impossible situation, we have no idea when we will be able to be there again. It is very sad to me, because after living out all summer and just fixing our house, and now living in Tampa, we are yet again not in our home, and you just want to be home. We been going back and forth on where we were going and today we just figured it out, which is a huge relief. We are staying at one friends Grandma's apt when we get home until beginning of March, when we are going to stay across the street where we stayed all summer at our friends house. We will wait out to see what is wrong with the house and go from there but for now we have somewhere to stay.

That is my long winded update, things sure have not been easy, I know the hardest part of everything is conquered and I am leukemia free, that is all that matters, but we sure did not need house issues on top of it. They say God only gives you what you can handle, I am glad he thinks so highly of our family that we can handle all of these challenges in same time frame.

Happy New Year ~ Day 49

2010-01-01T09:06:00.000-08:00

We rang in the new year quietly at home with playing Wii, Little Pet Shop and making cupcakes. We had snacks and watched some t.v. Olivia was asleep at 7 but somehow knew how to wake up 10 min before the ball dropped for all the fun. They partied hard with hats and blowers and had a good time! It was a fun night with the party animals. Olivia loved screaming HappyNewYear, but did not like the sparkling juice as you can tell from this photo below.

We have a lot to look forward to in 2010, and are ready to enjoy this year to the fullest as a family. I am looking forward to not thinking about being sick or worrying about procedures, etc but knowing it is in the past for the most part and I have 2010 to heal and recover. 2009 was a rough year, but in so many ways fantastic to us also, with all of the love and support we received we won't forget it.

Happy New Year!!!!!!!!!!

Christmas 2009

2009-12-27T18:28:00.000-08:00

Christmas was wonderful, even being away from home in Tampa. We did not bring our Christmas stuff from home, so we got a small fake tree to decorate. The kids were so excited. We got some basic ornaments, then we made paper ornaments, then Grandma made clay ornaments with the kids, and we thought our tree was full. One day a surprise box arrived from Steven's work Campbell Property Management with ornaments from his coworkers, each with a different message, and before we knew it, our tree was full just like at home. It was such a warm gesture and alot of fun to open the different ornaments, now we have them to add to our tree next year with wonderful memories. Thank you to all who sent them and thought of us in such a unique way! We made paper chains and hung lights and stockings and Christian said it was the best Christmas decorations ever! He is right, it was and it is because we did it together.

We did our usual traditions of new Christmas pj's for the kids from Santa on Christmas Eve before bed, this year he was very thoughtful and brought them for all of us too. We had a nice dinner and left out notes and cookies and milk for Santa. Christian left a great note and even a cookie for Santa to take to Mrs. Claus too, everyone always forgets her. He still whole heartily believes in Santa and I love it. Christmas morning we were up bright and early, all Santa's helpers were just asleep and Christian was wide awake. We tossed and turned till 5:45 and then it was on. Of course Santa was extra good to them and they enjoyed all their gifts. We had a nice relaxed day with way to much food and talked to our family on the web cam.

We missed many of our traditions we would have done that I thought were so important to the holiday, like parades, class parties and pageants, visiting the 100 ft tree, breakfast with Santa, Christmas photos and cards and many other things. I realized we don't need those things, we had the best Christmas we could have had, just being together and realizing the miracle that we have been given this year. And next year when I am feeling better and we can do all these things, I want to remember that we don't need any of them to be happy or have a great holiday and I can give myself a break and it will all still be OK. I think this year we discovered the real reason for the season.

I hope you had a very Merry Christmas as well.

Day 44 and Some Photos To Share

2009-12-27T15:58:00.001-08:00

Here are some photos from our very first outing when I got out of hospital a few days later to the park.

Sofia took this photo of me up close I was so cold and she caught me off guard with no smile

And this one too, the second one makes me laugh, I am out there all alone sitting on edge of the bench, it it descriptive of my situation right now though, staying away from germs, lots of people, etc.

What I see in these photos are very happy children, and that makes me know that we 100% made the right decision on having them with us in Tampa for this temporary move. It also shows how every day they fuel me and push me on, even when I am feeling to tired.

Today is Day 44 and things are moving along well. I only had clinic visits two days this week, and no new transfusions. My platelets have doubled all on their own and continue to rise. I am off IV magnesium. I am still diabetic, the insulin has become easier to manage and my numbers are in lower range, today was the first time I gave myself the shot instead of Steven. I figured I better learn in case he is out or something. My appetite is not great, but I can eat my meals and always manage to find something that works. My blood pressure still continues to be high so that medicine doubled this week. It is a fine balancing game with all the medicines, each week on Monday they change around, so I expect changes tomorrow again, hopefully with some coming off or amounts down would be a blessing, especially the prednisone. My GvH responded amazing to it, so they have to slowly taper it away, so maybe one more pill down this week. My fatigue is getting better, I am still in no shape to manage more than myself, but I can usually make it throughout the day with one nap and then get a good nights sleep. Daily tasks I feel I have to drag myself to do, but I see it getting better. Children help that along more than you want, they force you to be up and at it. Thank goodness for the endless energy of my Mom and Steven, they are doing it all and I just wonder how and where they get the energy, lol, even though I know I did it to and will once again, right now that is a distant thought. I wish most days I could get a jolt of energy, just feels like I am dragging along. Day by day though, I know I need to be patient. For now, I am beyond pleased with my progress as our the doctors, etc. The fact that I am home and out and about already is amazing to me, like is restricted, but we are still going out, slowly going places at off peak times, we went to the park, the movies, where luckily there was only one other family there, I have been to a store, all the time I wear my gloves and or mask to protect myself, the gloves are greatest though in a store, allows me to touch cart or items and not get my hands dirty, then peel them off once outside and leave germs there. We have become hand washing and sanitizing freaks, we use it before we go in somewhere, in the store, when we get in the car, The Russo's have the cleanest hands around! Hopefully everyone is going to continue to stay healthy.

Day 38 update & Merry Christmas

2009-12-21T19:35:00.000-08:00

Merry Christmas! Sorry I been neglecting my blog, I been home for two weeks yesterday now, it has gone by so fast and been a blur. It does not help that water got spilled in my lap top and it is not working. I am still doing well, this week I went down to three days a week clinic visits. It was confirmed with biopsy that I have skin GvH, but I responded so well to the prednisone they have already started backing off it. The rash has cleared up and left dry snaky skin in its place that is peeling, lovely, but once that clears up my skin should go back to somewhat normal. The prednisone has made me temporarily diabetic, so I been checking my blood sugar three times a day, today I had to start insulin shots at home though, it has been way to high, so tonight Steven administered the first shot. I have to say he does a great job, he is in charge of all the medicines and shots, he is gentle with it, but at the same time it is scary having your husband with no experience in medical field giving you IV's and shots. We sure have learned a lot these past few years. As they taper off the prednisone, and once I am done with the medicine I will not be diabetic any longer, it goes away in a few days. Medicines are changed around, added and backed off each doctor appt on Monday, tonight is the first night since being home I do not have to have an IV bag of magnesium, I am now done with the IV's, just taking pills. Lots of pills! My energy level is up and down, one day it is great, next day I am really fatigued. It does not take much to make me tired, our outings are short and sweet when we go because it is hard to be out to long, but at least I am out.

The kids are on major count down to Christmas, every day they count down, they are so excited. Santa still has a lot of wrapping to do, but I think that they are going to be thrilled come Christmas day. Mom and Steven are doing well, tired, taking care of me and three little ones is no easy feat, but we go day by day and are doing the best we can.

Thank you for all the continued prayers, we are truly blessed to have me doing so well, doctors keep saying they are thrilled with my progress, and that is all the Christmas present I need this year. To be able to say I am healthy, with no Leukemia and hopefully now with a new immune system and no way for this horrible disease to continue seems surreal, but I can say it, and I am proud to. This year we are extra thankful that I am here and HEALTHY.

Grafts vs Host Disease

2009-12-14T12:26:00.000-08:00

Things have been getting a little better each day, each day
I feel a little stronger and not so blurry tired. I have a lot of limits, so
I know when I finish from hours at the clinic that I should take a nap before I go for a walk or try to go out for a bit. I was able to go out around the lake we have yesterday and take a nice walk with everyone, we fed the ducks and let the kids play in the volleyball court sand running around.

Today I had a doctor appointment and he is 99% sure that the rash I have on most of my body is Graft vs host disease. Today I had a skin punch test, yeah it is about as fun as the name sounds. They take a bit of skin off my back to test but I have a raised rash on my arms, upper legs, chest and back and it is itchy and angry. Cortisone cream did not calm it, so today they proscribed prednisone for it. I am not happy to have gotten it, but skin gvh is better than of the gut or liver, so the hope it a couple week course of prednisone will take care of it and calm the rash down. Problem is steroids and I don't do well, so I also now been prescribed a glucometer to measure my glucose before each meal as steroids make me diabetic. I am not happy about this complication or result, but it is a known fact of transplant, I was told it was less with cord blood, but alas my body did not avoid it. I also needed platelets and 2 units of red blood today, so I
been here all day. I feel a little better since blood started, mine was low so this might be the boost of energy I need. I did get my appointments changed from 7 days a week to three, so that is a bonus. I have ventured out to the park and Walmart, they warn you to be so careful, going at non peak times, etc. it makes you nervous to go out. We went to Walmart and
I wore gloves that way when I touched anything it was not touching me,
I dont have to wear a mask, just be careful with touching, I thought it would be weird, but it was not, it felt good to be out. Of course we were there to long and i was exhausted. It feels weird to be trying to get back to normal, going out, having freedom, etc. with worrying about getting sick, but you cant stay in a bubble forever. I just have to be really careful. It is limiting where we can go and hard on the kids, we cant go to a lot of kid places for a while, luckily they are easy to please and happy so far with where we been. I get tired right away, but hopefully that is going to get better each day as I get stronger.

So my first week home went well and I will continue to improve, hopefully rash free. The kids are so excited about the holidays I think they are going to bust, we been watching every possible holiday movie, decorating the tree, they are on the count down and it is great to see them so excited. We cannot do the usual holiday things we do, but so far they seem ok, Christian said our tree was the best one ever! We are going to make some cookies closer to the holiday, and of course continue our movie athons!

Catching up and being home

2009-12-10T05:29:00.000-08:00

Well I been home for a few days now, and there are not many opportunities to get on the computer. Overall I am doing excellent, according to my doctors I am out of hospital and engrafted two weeks early, my numbers are doing well, I am feeling pretty good, they are overall really pleased. My days are busy because I have to go each day to the Bone Marrow Clinic and get my blood tested, then I have to wait an hour for the results, then wait for them to be read by my doctor to see if I need any red blood or platelet transfusions, if you do then you get that, then my wbc shot. On average every day I been there four hours each day. Yesterday by the time we got home I was so blurry eyed I hit the bed and did not move for two hours. It takes alot out of me walking around there, so the evenings I spend exhausted. I have to have an iv of magnesium each night, the nurse came and taught Steven how to hook me up, so our evenings are spent waiting for that to drip and then falling into bed. I have alot of pills to take four times a day, I am doing ok with them but they are an adjustment to take so many so many times a day. So I am completely exhausted, but try to spend the time I am awake with the kids, who are more than thrilled that I am home. It is wonderful even if i can not care or do much with them to just be home and watching them, the hugs are great and snuggles. During my nap yesterday, Olivia kept coming in and rubbing my face and kissing me, she is so sweet. My energy level is very low so getting on the computer is not something I am doing much, I will update when I can.

Thanks for all the well wishes and prayers, they have brought us through the hardest part and are still carrying us through my long recovery.

ENGRAFTMENT CAME

2009-12-05T07:45:00.000-08:00

Yesterday on day 21 my numbers reached engraftment levels, so I got official notice the donor cells are working and en grafting into my body. My numbers continue to improve, today my white blood count is up to 1.0 and my anc is 600, in disease fighting stages again. I am set to go home tomorrow day 23, yesterday they started switching all my iv's to pills, its a lot of pills but I am getting them down, only thing doc said to me today is to drink more, i did not do a good job of that lately and she wants me drinking more before they release me. Could be later afternoon by the time all the parities that need to discharge you come by, so today and tomorrow till i go will pass slow.

I am so thrilled to know that all of this hard work and rough days were for good reason, and that my body is making healthy cells. I can not wait to get home and see my family when I want to, I am sure I am going to make up for the lack of sleep I have had here, and hopefully I will be able to start eating again at home, nothing here is least bit appealing.

Thanks for everyone who helped pull me through these rough weeks, it has made it easier to keep going on.

Day 19 - starting to trend upwards

2009-12-02T17:21:00.000-08:00

Well after some really rough days, things look to be turning around. Today my WBC doubled and jumped up, which is a great sign that I am beginning to engraft. I am feeling a bit better, had two platelet tranfusions today which knocked me out a bit, but I had a restful day which I needed. Doc was in this am and pointed to early next week on the calendar and said I should be able to go home, music to my ears. My rash seems to be subsiding some and the swelling in my eyes and face is a bit better, to me it looks awful everyone else thinks it looks better. Eating and drinking are still proving to be hard to do, but I do my best and eat what I can.

Thank you for all of the uplifting thoughts and prayers and hang in there's, they made me smile and realize I could hang in there through this difficult patch and that the worst is just about behind me. I know when I get home the fatigue and exhaustion will hit hard, but to be able to sleep uninterrupted will be glorious, and to be able to see the kids all day long when I want will be great.

Steven and Mom had to go to a caregivers class that was mandatory before i leave the hospital, so they did that today, and now they are all set and know what to do, there are so many precautions we have to take.

Thanks for continued prayers - keep em' coming, I know they are helping to heal me.

Day 17 - Still waiting for engraftment

2009-11-30T07:55:00.000-08:00

Sorry for not blogging for a few days, I just have not been feeling well enough to be on the computer. It has continued to be a hard time for me. My entire body rash is still here, including my face, and my cheek and under my eyes are very swollen, it makes it hard to see the screen. My eyes are itching out of control. They say all this is from the radiation. I woke up today with my face peeling all over, even more lovely. They say that is good though, it means new skin is forming, so the old damaged skin peel away. I am still very congested and my appetite in past few days is gone, it has been really hard to eat or drink anything. I just feel awful. I am receiving iv medicines 24 hours a day and it feels toxic to me, it is just way to much. Until engraftment starts, which they figure should be end of this week I cant come off any of the medicines. I sure hope engraftment comes soon, I am just at the end of my rope, all normal they say, but I am tired of not feeling well. I been here 25 days and I just want to go home to my family. I want to see them when I want, to be there to help care for them and play with them, to sleep all night without being woke up a zillion times, you get the picture, I am just done with all of this. My mood is not where it should be, but at this point it has been a long road and I am ready for the next part of the road to begin, the road to feeling good. Today is the first day in I cant remember how long I do not need a transfusion. so the kids are coming by here to do their school work, that will help to cheer me up.

Sorry for the negative post, soon I hope as I feel better to start having more positive things to write. The doctor said today these are all normal, and he thought I was doing great, I love to heart hat when I feel so bad, but I will take it.

Day 14

2009-11-27T14:04:00.000-08:00

Today is day 14 and it was a rough day again as were the past few. My mornings always start well, but seem to go downhill. A positive note I was able to be disconnected from all my iv's to get a shower, which felt like bliss. About 11 a.m I got the shakes so bad and could not get rid of them. The doctor came in and said since I keep having them along with fevers they were going to give me a pain medicine which takes them away and then get infectious disease who manages the drugs to switch me to another antibiotic and also cortisone shots. I still have this horrible head to toe sun burn rash. Anyways hour and a half later and me in bed shaking out of control no one comes with shot, I call nurse and said hes not giving it to me as they are working on switching me over. I demanded to see the Physician's Assistant who is on the floor and I have her an ear full. You don't leave a person like that when you have no idea until the new plan in order. I was very upset with them, and gave her a piece of my mind. They ended up giving me a dose of Ativan to calm me down they said, which did not take away the shakes all the way but did some. Steven came over and talked to supervisor also to get me some help, it was a rotten afternoon. After the shakes came down I took a nap and just woke up, feeling a bit better, but hoping they do not return. It takes a lot for me to loose my cool and positive thinking, but these have been some hard days. I hope that my white blood counts start going up quicker and engrafting so I can feel better, I am not liking this cycle I am on. I know in a few months it will be behind me as I am home resting, but to get through that time is challenging a lot of me.

I felt so bad today I did not even want the kids to visit. Steven's Mom came in for a weekend visit and came over, but I am not sure I am up for everyone visiting later tonight, its been a long day. I am still not able to eat, one look at a heavy dinner tray and I am not able to eat it, I been surviving on fruit, cereal with milk. But they say it is great I am maintaining food on my own, so just eat what I can as long as you get calories in. How sad is it that Steven brought me a bag of my favorite chocolates - and they dont taste good to me at all. What - chocolate not taste good, lol. I will just save it for when I am up to snacking again.

For those who pray and are so supportive of me through prayer, please pray for better feeling days and engraftment soon, or the power for me to get through the tough days and maitaining my focus of why I am doing this and that soon the hard days will be in the past.

Happy Thanksgiving and catching up

2009-11-26T05:46:00.000-08:00

Happy Thanksgiving to everyone, I hope you have a beautiful day with your families and friends. My family will be coming to visit and have dinner with me this afternoon. I have missed them, I have not seen them since Saturday. Sofia is all better now and no fever for 48 hours so she can come back to visit today.

Days 9, 10, 11, 12 have been rough. Lots of complications or side effects arose we are trying to get under control. I have a red rash that looks like sunburn on my entire body and it itches out of control a lot. I have a ton of congestion in my nose and sinus area from the mucositis. The mouth sore are still there, they are on my lips, so my lips are swollen, I look really funny because my face is swollen and burning red. A lot of my by mouth medicines were changed to iv since I could not get them down. My appetite is awful, the sight of food can send me vomiting, but I keep trying to find things I can tolerate, it is not to much. I been getting the shakes, but really bad, they call them riders before you get a fever and have had to try several medicines to stop them once they start. I been getting blood and platelets each day, so the benadryl I get for that plus meds for shakes puts me to sleep, so I don't remember a whole lot about these last few days except I have felt terrible and cant wait to feel good again. They are changing all my meds around to try and find out which one is causing this red skin reaction, but still no luck. I have a three lumen catheter, which means I can get three ivs at same time and for past few days they all been going 24 hours a day, it is a lot of medicine, which I am sure is adding to my not feeling well. I am still trying to walk a bit and yesterday the physical therapist brought in Wii and we played tennis, which was actually fun and got me up and moving around.

Hopefully I will begin engrafting soon and my white blood cells will rise and then a lot of these issues will go away, it wont be to soon for me. I am ready to start feeling better already, come on engraftment, lets get busy!

Day 7 & 8 ~ Bye Bye Hair Once Again

2009-11-21T07:03:00.000-08:00

Day 7 was one week and one day since transplant. Day 7 and 8 are about the same complication wise. My nausea is there a lot now even with medicines, mouth sores and nausea mixed are making it hard to eat. The sores are in your throat and GI tract, so it feels like i am having constant heartburn since yesterday, they are upping my pro tonics, or stomach acid reducer to two times a day and gave me tums should i need them. I am eating what I can and could still take my pills by mouth. The doctor said today she would switch my pills to iv if I need it, i might have to end up doing that if I can not get them down today. Right now my morning ones are staring me in the face and I have no desire to try and get them down. My hair is falling out like crazy, of course once I realized that I wanted it shaved to stop if from falling out in pieces like it does, the salon here is closed on the weekends, so I have to wait till Monday. Steven could come and do it for me, but I don't think that is something I want, there are a lot of things he does to care for me , but it does not seem like that should be something he or anyone I know should do. My head is beyond itchy and hurting as it falls out, so I am trying to deal with it till Monday. Today a lot came out when I washed it, so now I have a spotty head, the bandanna came back out today since I am not a fan of walking around bald. This is the third time I will loose my hair in two years, I sure hope it is the last, I am tired of this.

Overall I am tired and just feeling blah, my numbers are still low, I am about to get another platelet transfusion in a little while. Even with how I feel, complications I experience, etc. they say I am doing great and am right on track where I should be, which is great. I wish time would go by faster, but i know I have to wait it out.

Day 6

2009-11-19T16:25:00.000-08:00

Day 6 has brought on a blood and platelet transfusions. My platelets were 2 this morning,so I had a transfusion and hemoglobin was 7.9, under 8 so it earned me two bags of red blood. Mouth sores are still here, my throat is really sore, so eating is becoming challenging, dinner was hard. Overall I am still feeling pretty well, able to get up and keep busy all day, and put makeup on still!

Grandpa Phil arrived and the kids had a good time so far showing him around, they were excited he was here. We had a long visit today and the kids went to open art and did some painting.

Tonight is going to be challenging, I was apparently retaining more of the fluids they are giving me than they want, so the nurse just gave me half hour ago a diuretic shot, and I been up and in the bathroom three times already in 20 minutes, I guess there wont be much sleep tonight. There is not a whole lot of rest around here as it is, usually from 11 p.m. - 4 a.m. is when they leave you alone to rest the most, then they are in here drawing labs and blood pressures at 4 a.m. and you have to try and go back to sleep after that. The fun of a hospital!

Sofia's Turkey Talk

2009-11-18T16:12:00.000-08:00

Today I spent the afternoon with Sofia, making a turkey project for school. We did a small video of her describing her Princess Zuniga turkey for her class to watch. Enjoy! I think she did pretty well for her first video, but then again I have always said she was going to be a star!!

Day 5

2009-11-18T10:23:00.000-08:00

Days are going by, not as fast as I like, but today is day 5 and things are still moving along. Side effects are starting, but they are expected and I am still tolerating everything well. My platelets are low, today they were 3, so I received a bag this morning, waiting on blood work to come back to see what they bumped up to. I will most likely need more every day until I start engrafting my cells, and no one really knows when that will be. I am starting to get mouth sores, and my throat is really sore. The sores are not just in your mouth but down your throat and GI tract, so it is uncomfortable. I can still eat without pain pills, just eating soft foods and slowly. The nurapathy in my feet is still there but I I think it getting better, I am able to tolerate it more so that means the medicines are working. Medically speaking I am exactly where I should be.

I am getting tired of being hooked up to IV's though. For past 24 hours I have had one or up to three of my lines being infused continuously. In half hour I will have a 30 min break with nothing to hang and I am waiting for that so that I can shower. Even with being disconnected from two of my lines, I am on a 24 hour drip in one line that houses itself in a small purse like bag I have to carry around, it is an immuno suppressent drug I must be on at all times, I forget the name. Dragging the IV pole around and being bound by it is getting old and annoying now. I want to walk but the thought of dragging my friend as I call it is not fun. The drugs are necessary to keep me healthy, but they are still getting to be old all the time.

Other than medical stuff, I been keeping busy with thank you's, emails, etc. I have written my thank you note for both the benefit and spaghetti dinner held in our honor, and for all the wonderful people who helped out, I have over 200 thank you's to send! Simply amazing. That will take me some time to address and mail the letters. I will be doing online shopping for the kids holiday gifts, I ordered their annual ornaments this morning since I can not get out and get them, we get each child their own personalized each year so they will have a nice collection as they get older. This year I got them silly elves that say Mom's favorite oldest child, middle child, etc. They are pretty cute and what I was looking for. We also have a tradition of new Christmas pajamas for Christmas eve, so I can browse and order them. Even though I will be not myself for the holidays, I am determined to make it a memorable and traditional one for the kids, with the same things we do at home each year.

I have a few thank you's for cards I received that made me smile. Thank you to Ann at Steven's work for the card and hope bracelet, I love it. Thanks Stacey for the birthday card, since Nov 13th is now my second birthday each year! Thank you to my friend Amy who sent me a smurfy little package today - it made me smile, I appreciate the photos and the cards. Thank you to my friend Carlene also for the cheery card. She always knows how to make me smile :)

So now I wait, to be unhooked from my friend and get a shower finally and then for my family to visit. Such is the exciting life of a transplant patient! Today we are decorating a princess turkey for Sofia's class project, she wants to do it with me and I am honored to have her come and work on it with her. The kids really are adjusting well here, which makes me feel so good. Tomorrow they are getting a visitor, Grandpa Phil is coming for a few days, Mom's birthday is this weekend and we asked him to come and celebrate with her. He was able to get the time off and is coming, so everyone is excited to see him.

Days 3 & 4

2009-11-17T08:32:00.000-08:00

Painting I made yesterday

Day 3 was a busy day, but I did not feel great. I woke up feeling very out of my skin, and uncomfortable like restless leg syndrome all over my body. I felt like I could not sit still and everything was restless. Doctors tried to look at my meds and could not find out why, so it was a long day of trying to get comfortable. When the physical therapist came in she made comments about my hands or feet being numb, and I said they were. Well I thought about it last night and this am said something to the doctor, it is a condition caused by the chemo and radiation called neuropathy, and guess what - there is a pill to fix it. So I have already had the pill today and hopefully in a few days or sooner will shake the feeling and be able to relax again. Thank goodness for medicine sometimes.

Yesterday I also participated in the Open Arts Program like I did over the summer. An artist came into my room to work with me since I can not leave and I did a painting, I am attaching the photo. First I made the black design by moving a string all over the paper, then I used water colors to fill it in, when you turn it around it makes different designs, I like it this way, it looks to me like a lady, bald none the less, with a dress being like ah, I am free. Maybe just that is how I am starting to feel now that I am done with transplant and all procedure parts of my cure, now i am on to healing and feeling better. I thought it was ironic how it came out and looks like how I am feeling. The open art program is amazing, they have open art studio every day which the kids will come to some days, and it will fulfill their art requirement for homeschooling, plus they will have fun and enjoy the art time doing things that we wouldn't do at home. We did this over the summer and they had fun with it.

Today I got my first transfusion of platelets, they were 6 which is well below the normal range and below the 10 level they transfuse at. So I had a good 3 hour nap from the benadrly they premedicate you with, that stuff is really strong and makes me go to sleep pretty much right away. I plan to hang out rest of the day and rest,when platelets are low they want you not to do to much, to much risk of getting hurt if you fall, etc.

The children are finishing up at the park after schooling and Daddy working and will be by later on to visit. Steven is bringing me some foods I can heat up when meal time comes, the food here is less than desirable after how long i been here and feel so it is good to have something fast to heat up that I can get down. It is so good to have them close by, knowing they can come and visit so often just reinforces that we did the right thing by bringing them with us. They are happy and smiling when I see them and hear them being happy at home on the phone and that is all that matters is they feel safe and happy with us near by.

Day 2

2009-11-15T13:54:00.000-08:00

Day 2 has been pretty uneventful so far. It is beyond quiet in a hospital on weekends, so I am riding out my day. My counts are down, I am a bit sluggish with energy it seems, but still ready to blow this place and go home, lol. My throat is a bit soar, like mouth sores could be starting, but nothing we can do about that except great mouth care, and the radiation and medicines have made for a yucky stomach. Steven, Christian and Sofia stopped by to say hi after going to the movies together this afternoon, while Olivia napped at home with Grandma.

I have done some reading and am starting to organize a BIG photo project I put off for years, but since I now have time I felt like I should start, still not believing it will get done, but I can try and be positive :) I have not printed my digital photos since 2004 and the day before Miss Sofia's arrival. I have brought my drive with all my photos on it, I do have most organized by year on there that
i did last year sometime. The plan is to go through month by month starting with 2004until now and print out the photos for my photo albums. Just getting that done would be huge, then I could organize them into albums at a later time. It is going to cost me a small fortune, I am trying to do a little at a time. I seems ambiscous after a transplant, but it is something I really want to have done for my self and my family and i do needa large project to occupy all my open time now. I adore taking ohotos as you know and not being able to flip through them or have tem on hand is hard, esp when she asks where are her photos when looking at her brothers. And now Olivia is in the mix to. So today i am starting, searching out the online company i am using and maybe during my recovery I will put a small dent into this very large project.

I will share some of my favorites as I rediscover them on my drive,like for instance the very first photo we took with Sofia below

Day 1

2009-11-14T10:24:00.000-08:00

Today is considered day 1, yesterday was zero and transplant day. Yesterday was also considered by 2nd birthday, so I will now celebrate twice each year, and what a reason we will have to celebrate. Yesterday was just the infusion of cells and resting, all was well with the actual procedure, my blood pressure went high from preservative used to freeze cords, so I got some medicine and it leveled off. I went to sleep early and was feeling lousy still from all the meds and mostly the one steroid I have been on which has been making me sick. The steroid stopped yesterday and they switched some things around so now today I feel better. I slept well and woke up not feeling anxiety or jittery like I was, the medicine is tapering off and also I think the fact that the actual procedure is done now makes a world of difference.

Today I have spent my day resting, on the computer, talking to some friends and eating. I found a new liking for lime Gatorade yesterday so its been my drink of choice. Very exciting stuff going on around here. My appetite will fade and I might end up with mouth sores soon, that is pretty much a given, so for now i am trying to eat and drink while i still can. My white (wbc) blood cells have bottomed out to 0.03, normal is over 5.0 so I am officially at high risk for infection, which we take lots of precautions for, my red blood and platelets are on the downward trend to 0 also, all which we expect. They will hover in these low ranges for a bit and during that time I will get blood transfusions until my own cells, or my new baby cells start taking over and making new healthy cells, I believe this is called engraftment, which is what we are waiting for.

So for now Day 1 has been uneventful and I look forward to a little while from now when my family comes to visit, they went to the science museum to burn off some energy today. It is beyond wonderful to have them so close, I feel so blessed by all of the good things happening in my life today. The next hurdle is around day 100 when you get to go home, i am not thinking about that then, day by day for now, 1 day at a time, tomorrow is day 2 already!

~ Day 0 ~

2009-11-14T09:39:00.000-08:00

There they are, the two bags of cells that make up a transplant. Umbilical cord blood cells from two different babies, one born in 2007 and one in 2009, which were infused into my body and are moving around right now starting to hoppefully take over my bone marrow and make it their healthy marrows, since mine has been wiped out with chemo and radiation.

~ Days -2 and -1

2009-11-12T10:14:00.003-08:00

The past two days been a bit of a blur, I started not to feel well yesterday, the drug, steroids with chemo mostly mess with me and make me jittery and not feel well. They counteract those with others, so what you end up with is a big mess and might as well go to sleep. I did just that yesterday. This am we are trying to figure out what ones they might be and fix that. I have one more radiation this afternoon and my cells will be on board tomorrow. They are already here and ready, we are guessing mid afternoon for transplant. After all we been through the transplant is anticlimatic, but i like it that way.

Just wanted to update as promised, I am sure as I begin to feel like myself more I will be able to post. Next week is supposed to be a hard week with counts bottoming out, so keep me in your prayers over next few weeks as things bottom out and then those heatlhy baby cells begin their growth.

~ Days -2 and -1

2009-11-12T10:14:00.001-08:00

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Catching Up ~ Day -5, -4 & -3 ~

2009-11-10T06:12:00.000-08:00

The last few day seem to have gotten away from me and I see I am behind in my post. Sunday Day-5 was a day of rest, no chemo or radiation, just regular meds. Monday Day -4 was day one of total body radiation. It sounds scary and I wont lie it was until after first session. The unknown of what is happening, etc. mixed with all that is going on already made it hard. I handled it OK, the positioning you have to stay in is very uncomfortable and the first session took longer to set up, etc. I survived and even went back for 2nd round last night. We made some sitting modifications, and used more tape, they tape your legs, feet and hands into position, mixed that with some pain medication and a relaxing ativan and things went much smoother. It does not hurt, you feel nothing, just have to be patient while you are being radiated and sitting absolutely still.

This morning bright and early was day 2 and session 3, we did same things as last night and it works, I am able to get through it without anxiety or pain and that makes world of difference. Two and a half more days to go and Friday is the big transplant day! Excited to be finally at this point and also nervous once again of the unknown part of it, but then on to recovery, being proud we made it this far and got through transplant and those baby cells can get in there and make me a new healthy immune system.

The kids with Steve, Mom and Mom's friend Darlene visited last night, they are really cute when they visit, esp in their warm little pj's. they take this quiet room and turn it into a whirlwind in a second, lol just like at home, but how else would it be? I miss being at home with them so much, it is so quiet here in this hospital and tehre is only so much i can do to keep busy, but when you go from being a working, productive mom to sitting around pretty much non stop it takes yhou back. I am trying to enjoy the down time,I know once I get home that willl not be the case, but I do miss my day to day routine at home alot.

Thank you for all the contineued prayers, it makes me smile to see messages and prayers coming my way - they are working and making this process do able for me and my family.

~ Day -6 ~ Chemo all finished

2009-11-07T16:02:00.005-08:00

Today I had my third and final round of chemo therapies, all done, pray forever. The queasy feeling has settled in, I have had to ask for additional nausea medicine to help it, still was able to eat and drink today which is good, so I am not being afraid to ask for help with it so I can continue to do so. Other than that just a bit sleepy, not sure if it is from medicine or just the fact that I am not used to sitting around with nothing to do and so much quiet time on my hands!

Steven visited today, bringing Sofia alone for a nice visit. It was great to spend some time one on one with her, we made bracelets with her beads. She is having a hard time with all of this, I think it was good for her to have some one on one time with us without the other kids. They finally got to go swimming today to, they been waiting since we got here. The weather is cool, 54 this am but then it warmed up. Mom and Steve said water was freezing, so they were only in a bit.

Nothing more exciting to report. Tomorrow am my continuous iv meds top and I have a day of rest, my bladder will be pleased as will I to not be up and down non stop.

~ Day -6

2009-11-07T16:02:00.003-08:00

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~ Day -6

2009-11-07T16:02:00.001-08:00

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~ Day -7 ~

2009-11-06T18:05:00.000-08:00

Today is day -7, and I have completed two out of three days of chemo. I had my chemo early afternoon, the fluids that they continuously give you make you go to the bathroom non stop, so having it early in the day was good, I might get some sleep tonight. I am still feeling pretty well, the chemo gave me a bit of a stomache but it resolved.

The kids came to visit around dinner time. It is always a whirlwind when all of them visit together. They snacked and watched TV and we had dinner together. They headed home to get ready for bed, Olivia did not have her nap and everyone was tired. This afternoon Daddy and Grandma took them to a playground a nurse told us about so they could get out some of their energy, oh to have energy like kids. hopefully they will be headed to sleep or already there now.

Nothing much happening here, trying to stay busy, getting lots of fluid medicines,I have to use a respiratory air thing that you breath in every hour to keep my lungs healthy so I need to remember to do that, they want 10 times per hour. The physical therapists came in today and gave me an orientation and assessment, a booklet of exercises I will be doing each day. My muscles have not recovered from my last treatments, so my balance is off and my legs have alot of weakness, so we will work on that. I like that they do that with you and keep you strong. They do not want you sitting, or in bed all day, except the days you feel so awful you can not do it, or when your blood counts are low and you get transfusions, then you have to stop the exercising until they are up again. So between doctors coming in and out, physical therapists, dieticians, pharmacists, the nurse and the tech, and walking around the floor several times a day for exercise, I wont get a whole lot of rest. I did get a good nights sleep, I slept from 11-3, then woke up and when you wake or if you don't at 4 am they get vitals, weight and labs, so I got it when I was awake and was able to go back to sleep until 7:30, so for a hospital that was good sleep. Steven spent the night with me which always eases my mind having him here with me, so I can sleep better.

Tomorrow is another copy of today but the great thing is that it is my last chemo - hopefully forever!

Russo Family Slideshow

2009-11-06T10:39:00.000-08:00

For our spaghetti dinner last Friday, Carla asked for family photos to make a slideshow. While picking them out I made them into a show for her, and
I wanted to share.

More photos!

2009-11-06T09:44:00.000-08:00

Spaghetti Dinner Photos

2009-11-06T09:26:00.000-08:00

Here are some photos of all the wonderful family and friends who attended last Friday's spaghetti dinner.

Here are some photos from last Friday's pa

~ Day -8 ~ Today Is The day!

2009-11-05T14:39:00.000-08:00

Today is the day. I am posting those words that were said to me by one of my transplant doctors today. That is the slogan that is used at Moffit and as he was talking to us and all excited that we were starting today, he said those words to us. Today is the day that I came back to Moffit. Today is the day that I begin my cord blood transplant. Today is the day that Moffit admitted their 1st patient for a cord blood transplant. Today is the day we don't talk about it anymore but we begin the process and do it.

I was told to expect a call after 10 am today or maybe later afternoon when a bed was ready for my admission. Well at 8 a.m. exactly my phone woke us all up and it was admissions saying they had a bed ready. I wanted to spend some time with the kids playing, etc. but that was not to happen. We had breakfast and hung around a bit and then we got ready to leave. Saying goodbye was hard, I knew it would be. And it is not goodbye, it is see you in a little while since they are here and will be visiting daily, but knowing I would be in hospital for 4-6 weeks and not home with them all the time, and just that we finally arrived at this point to start makes it so real. Steven and I made a quick stop at the health food store to pick up the kids gluten free foods and dropped them back off and we headed to the hospital.

To say that since we arrived has been a whirlwind would be true. My door has been revolving with people in and out all afternoon. The nurse and tech who take care of me, with all of my instructions and directions. The pharmacist who gave me way to much information about all the drugs, filled out my calendar and went over my schedule, etc. The infectious disease doctor. Dr. Fernandez my transplant doctor, and also Dr. Tomblyn who I had not met. She is the new doctor here and the reason why Moffit is now doing cord blood transplant, she did them at University of Minnesota and is starting the program here. I wanted to meet her and I had some questions which she was able to answer, plus it was nice to put a face to the name of the doctor getting my cells ready.

Things are quiet for a few minutes now. Steven has headed home to eat dinner with the kids and my Mom and spend some time with them. I am sitting and blogging waiting for dinner. Today is called day negative eight (-8). We start out negative and count towards positive, day 0 being transplant day. I will have three days of chemo, with Sunday being a day of rest, meaning no therapies. Monday through Thursday next week I will have TBI, or total body irridation (radiation) two times a day. Next Friday, November 13th will be my new birthday, that is transplant day.

Tonight is my first chemo at 9 p.m. I will be receiving Fludarbine. Tomorrow and Saturday I will receive Fludarbine and also Cytoxan. Cytoxan is hard on your kidneys, so starting tomorrow am I will be hooked up to continuous fluids and one other medicine Messa, I am not sure of the name to help flush out the chemo's till Sunday.

I found out today the ages of my cords as they call them. I am receiving cord blood from two babies, one was born in 2002 and one in 2009. One is O blood type and one AB, so after my transplant my blood will change over to one of theirs. No one knows which one will become dominant and win out, we shall see. Amazing that a 7 year old and a baby will be saving my life.

Everyone seems to be doing well with our new living situation. The kids are having a good time with Grandma, investigating their new environment, waiting to be able to go swimming. We are waiting till Christian is better till they go. Christian woke up with pink eye yesterday, so we had to take him to a walk in medical clinic for a check up, he got antibiotics and drops for his eye. Its never a dull moment in the
Russo household. As soon as he is better they can come and visit, hopefully that will be soon. Grandma is taking good care of them, hopefully we wont wear her out to soon. Steven has been working with his laptop and phone, keeping busy. Homeschooling starts on Monday. I am hoping to settle in here and be relaxed, it is a long stay and a long road ahead of me, I think and hope I am anticipating it to be worse than it will be, but it is so unknown I don't know what else to do. I have to learn to take it one day at a time and stop invisioning the whole picture, but that is harder said than done. Today was a hard day for me, at home and moving, getting us all settled took up all my time and thoughts, but getting here and sitting now,, the reality of what is happening starts to hit you, I just dont even know how this all happened and we got here. Thank you for all of the prayers, love and support of our family, it has been amazing to see how wonderful everyone has been with us, we are blessed. I hope to update every day on what is going on and how things are, I am positive there will be some days that I will not feel well enough for a long post, but right now I am only worried about today.

Transplant Update

2009-11-04T21:21:00.000-08:00

We have arrived safely in Tampa and are almost all settled in our new apartment. Tomorrow I will be admitted into hospital to begin my conditioning for transplant. As of right now, I have 8 days of conditioning and transplant day is set for November 13th.

Once I am settled into my room and have some time I will update with more details, etc. about getting here and getting started.

Everyone is liking our new home and seems very happy so far - it is wonderful to have them with us this time :)

Yumm - Spaghetti Dinner A Success!

2009-10-30T19:18:00.000-07:00

Once again,thank you does not seem like enough to say to the friends who organized tonight's spaghetti dinner held in honor of our family at Advent Lutheran School. It was alot of fun and I am so incredibly happy that we were here to attend. My family had a wonderful time and we can not thank you enough for all of your hard work, time and heart you put into organizing this event.

I will say that I was very nervous about attending. It seems silly to be nervous to attend an event being held in my honor, with my closest friends and where so many people who care for our family were going to come together. It is just the idea that the event was for us, being held because I have cancer and am going for a transplant, being held to help us financially get through the transplant and fund the living expenses, etc. we will incur. It is the fact that it was for our family which made it difficult, I am sure this is a normal feeling that anyone who experiences something like this feels. I knew that I would be okay once we got there, and I was. We walked in to a beautifully decorated gymnasium and a very relaxed fun environment. It was nice to be able to speak with so many people who came out to support us and say thank you in person. I knew I would be to emotional to speak, but I did get a chance to say thank you to everyone there and let them know how much we appreciate their support, which of course lead to tears.

To my dear friend Carla and her husband Ray, along with countless other wonderful friends organized this dinner for us, and you guys did an awesome job. The fact that you decided to take on the planning and organizing of this dinner for us is something that we can not thank you enough for, to me thank you does not seem like enough to say, but at the same time it says it all. You have helped to ease our minds so much as we head into my transplant journey.

We feel so blessed to have so much support, all around the world we have support and people praying for us, it seems so hard to imagine my story is spreading so far. So many people tell me I am an inspiration to them with my attitude, I sure do not feel that way, I am just trying to handle a very difficult situation the best way I can, and try to provide as normal a life as possible for my children during this not normal time period. I know any one of you would handle it the same exact way. Even though I do not see myself the way others see me, I do hope that I do inspire people, inspire them to be positive and know that cancer is not an option for them either, inspire them to be donors of cord blood, bone marrow and blood to help save lives. Before my diagnosis I did not know what Leukemia was or why it was so important to donate our time to give blood, etc. but I do know and I hope that everyone takes the time out of their busy life to help others this way too.

I have not updated my blog that much lately as I been busy feeling good and staying busy with the kids and getting us ready for our trip. We are leaving for Tampa this Tuesday, I check into the hospital on Thursday to start chemo and radiation. We will be living in Tampa for next 100 days while I am in hospital and then when I come out and am recovering.

I will post lots some photos as I download them from my computer and get in some from everyone else who took some.

Thank you for a wonderful night!!

Light The Night Walk

2009-10-26T07:52:00.001-07:00

The Light The Night walk this past weekend was a lot of fun and a big success for Team Russo. Thank you to everyone who participated, I look forward to seeing you next year again. Here are a few photos I snapped of the kids.

Team Russo reached it's goal!!

2009-10-21T18:22:00.000-07:00

This coming Saturday night is the annual Light The Night walk, and this year Team Russo is walking again and I just found out that we met our team goal of $500, we raised $525 to date! These funds go directly to The Leukemia and Lymphoma Society and to patients directly affected by cancer.

If you are interested in walking with Team Russo, click here.

Way to go Team Russo!!

Only two words...Thank You!!!!

2009-10-18T18:47:00.000-07:00

Tonight I can only think of two words that seem appropriate - Thank You! Today in Rome, New York the Cancer Is Not An Option benefit was held in honor of our family and it was a HUGE success. My Mom and Dad, along with lots of other family, friends and local business owners organized the event and they did an amazing job. They sold tickets for admission, they had over 50 baskets and items that were sold in a silent auction, my cousin Jaimie a massage therapist sold one minute chair massages, the Be The Match registry came and held a donor drive - 79 new donors were added to the registry today, there was food and drinks, music and much more. I wish that our family could have been there in person, but we used Skype and we had a video call where we could see what was going on during the event and talk to a few people. WKTV news was there and they did a story and short video, click here to view a video from the benefit and my Mom explaining why it is so important to be on the national donor registry.

While it is to late to find an adult donor for me as my transplant is approaching soon, it is not to late for thousands of other people who need a donor. Since my relapse in June, between the bone marrow drive that was held here in which 74 donors new donors were registered, and the benefit today where they registered 79 new donors and the numerous family members, friends and friends of friends who ordered online kits, there has been close to 200 new donors added because I have Leukemia. If there was a reason why I was proud to have leukemia, it would be only this reason. So many others were potentially helped due to my sickness, and that is great news in a scary situation. I even saw on the Be The Match regisry website tonight that they are accepting donations of cord blood from newborns, which is what I am going to have as my transplant. I hope that one day it is mandatory if you are not going to save and bank the cord blood for your baby that you donate it and it is saved for those who need life saving transplants.

There are many more things to say to those who helped make this event possible, but the two that still seem most appropriate and sum it all up are THANK YOU! You took your time and ideas and worked together pouring your heart and soul into planning, organizing and fundraising for the past three months and you created a wonderful event and a day in which so many benefited, we can't say it enough - THANK YOU!

I will be sure to post more photos and videos as I receive them. If you have not registered to be a donor yet but would like to, please visit the Be The Match Registry and order your kit online today.

Surreal...

2009-10-10T19:56:00.000-07:00

Surreal is the word I use to describe all of the things going on in my life today. Cancer, bone marrow and cord blood transplant, fundraising, etc. Every day I live my life, leukemia or not, heading to transplant or not, I am living it and it feels like every day life to me now, but to the outside world it is not normal. Every now and then I think about it in different ways or just realize how surreal it is.

For instance it is surreal to walk into your daughters school and while checking her into the computer look down and see a flyer advertising a spaghetti dinner, and see your families photo on the bottom of it. To have a full front page article written about you and your struggle with leukemia and fighting to bring awareness to how important it is to be a bone marrow donor. Yes, there was this article, it was written in the Rome, NY Sentinel and published today, my mom called tonight to read me bits and pieces. I will publish link when it is up online. To go to the transit site and see the appeal letter that was written and being sent out for you. To be out with your family at Lowe's doing a fun kids building activity and have someone compliment your hair and ask where you get it done. The compliment is not surreal, telling her that it is a wig is, and the look on her face, being honest and open about cancer and the effects it has on our life, how it is effecting us, our friends, our families, etc. is all surreal.

Reading this appeal letter written on my behalf, and realizing they are talking about me, totally surreal. As I said I have been living what I am going through and it just seems like a part of my life and we have gotten used to the tests, hospitals, etc. But when put into perspective like below, it just takes it to a whole different level.

******************************************

Dear Friend,

Kimberly Russo is fighting for her life.

In 2007, Kimberly and her family received devastating news when she was diagnosed with acute myeloid leukemia (AML). Kimberly, a devoted wife and mother of three, had a life she loved. She was determined to fight her disease, and after treatments went into remission. Kimberly and her family were thankful for her recovery, and she made a conscious effort to live each day to the fullest. Now, two years later, her cancer has returned. Doctors have told Kimberly a bone marrow transplant is her only hope for a second chance at life.

Despite her struggles, 35-year-old Kimberly is optimistic about the future. She looks forward to the lifesaving transplant that will allow her more time with her family. Kimberly and her husband, Steven, would like nothing more than to grow old together and watch their children grow up. But they need your help.

Unfortunately, Kimberly’s dream of a new life comes at a very high price.

A bon marrow transplant costs approximately $675,000. And that’s only the beginning. Even with health coverage, Kimberly will face significant medical expenses. She will require costly follow-up care and medications, which are as critical to her survival as the transplant itself. Because the transplant center is 220 miles from her home, Kimberly will incur substantial travel and temporary housing expenses as she goes through treatment and recovery. Her family will relocate to Tampa for several months to be near the transplant center, further adding to their financial strain.

What if your life depended on the compassion and generosity of others?

he National Foundation for Transplants (NFT) is working with volunteers and supporters to help relieve the growing burden of expenses for Kimberly and her family. NFT has been assisting transplant patients with advocacy and fundraising support for 26 years. Your gift—of $25, $50, $100 or more—will enable NFT to provide Kimberly with the financial support she desperately needs.

You can help by visiting www.transplants.org/donate/kimberlyrusso to make a secure online donation. You can also mail your check to NFT, 5350 Poplar Avenue, Suite 430, Memphis, TN 38119. Please make your check payable to NFT Florida Bone Marrow Fund, and write “In honor of Kimberly Russo” on the memo line.

If you have any questions about NFT, feel free to contact the NFT staff at 800-489-3863.

Many Thanks,

*********************************************************

So even though all of this seems like a dream, like I am looking at it from the outside in, it is really happening to us and even today while it is happening and in the future after it is all over, I look at it and just can not wrap my head around it. I am in awe of the knowledge of the medical professionals who are doing all they can to cure me, in awe of all the love and support we have received and still are, in awe of my strength sometimes to endure all of this and keep on fighting, even though it does not seem like fighting, as cancer is not an option for me and I will get past this.

I hope when all of this is over and I am healing to be able to take my knowledge and what I learned through cancer and turn it around and help others, I have always known I was given cancer for a reason, I don't understand the entire reason yet, maybe one day I will.

I do know being a mom and wife every day is real. As I prepare to have my transplant, I am still doing carline, diapers, cooking and cleaning and being mom. And of course, one of my favorite things - taking some photos of my family.

Pre-transplant testing all done

2009-10-07T16:57:00.000-07:00

Monday and Tuesday of this week Steven and I traveled to Tampa once again for me to complete my pre-transplant or vital organ testing. We were up at 5 a.m. for our early am flight and were in Tampa and at Moffit by 9:15 a.m.

My first task was to give blood, and not just a little - 14 vials of blood. They had a very hard time finding a vain to take it from, mine are all scared over from all the chemo, they had to call in the big gun there who has a vein finder, a tool to help him find a vain that might work. They tried twice and finally got one, but it did not want to work so well, so after lots of fishing, poking and prodding and 3 vials clotting, they eventually got it all and I was done with that - 17 vials later! I then went to meet with the psychologist and also had memory tests. This testing is to set a baseline for where
I am at mentally, physically, etc. with all of my organs. Good news is my memory is excellent. After that I checked in to have a bone marrow biopsy, another iv shoved in and then I was put fast asleep for the biopsy. After I woke up, I had an EKG in the recovery room. I had to fast to the biopsy and I woke up around 3 p.m. from that thinking I could eat something, but was told that I had a CT scan at 5 pm and I had to be fasting, so no eating for me. I had a chest xray next, the easiest thing of the day. From there I went to nuclear medicine to have a muga heart scan. I had kept my iv in since we knew I would need one for these tests, but for this test they draw some blood from your iv, then they inject the blood with a small amount of radiation and then we wait 20 minutes. After 20, they inject that blood with radiation back into me through iv and then I lay still why the machine takes photos of my heart. After that was over I was on my way to get a CT of my thorax and sinuses. Finally about 5:30, we were done for the day. We headed to our hotel, exhausted and starving and found that the power was out. We got into our room to drop off our stuff and headed back out to get dinner, and we also toured the apartment complex where we will be renting an apartment, the outside common areas at least, it is really nice and they have a big pool and outside area, with a fire pit, and also in the club house a fitness area and pool table, there is a big lake to walk or run around, it looks like it will be a great place to spend some time outside with the kids while we are there. We headed back to the hotel and the power was on, and I think I was out for the night as soon as my head hit the pillow.

Up early the next day, I had an 8 am pulmonary function test, that was a challenge believe it or not. I thought I was in the clear for getting poked with needles that day, but it was not to be. The pulmonary test even needed blood, and not from just a vein, from my artery, in my wrist, to check my oxygen. Ouch, that hurts in that spot, your arteries are down deep. I survived and then completed the breathing parts, then we headed to Bone Marrow clinic for an appointment with physicians assistant, who determined that my liver enzymes are high and have been rising over last few months, they need to know why before transplant, so you guessed it, over to lab for yet another stick. This time the girl got it on first shot and I was relieved, can you tell I have alot of anxiety over being stuck all the time with needles??? We briefly meet with a social worker, every patient is assigned on at Moffit, and then we headed for a quick lunch. After lunch we headed to our final task, a bone marrow transplant class, which lasted for 2.5 hours with three other patients and their spouses. Finally we were done and heading back to the airport. There was a bad accident and we were stuck in traffic, and just made our flight, but we did make it and were home that night to sleep in our own bed and put the kids to bed. Man, what a long two days that was.

I am supposed to head back on the 19th to get the results of all the tests. I hope all is well and we are still on track for Nov 1st start date. The one glitch we have now is that policy states that they will not give you keys to the apartment to rent until you are released from hospital, which does not work for us since we need that apartment before I check in so the kids, Steven and my mom have a place to stay. They are working on seeing about making that happen, but I will not know until a few days before we leave, talk about making it hard on you. If we can not get in there are other apartments owned by private companies we have to rent for the time I am in the hospital, they could be double the cost, or we can rent a hotel room. I am crossing all I can and praying that the apartment comes through and we don't have to move more than one time.

Things are busy around here, we are starting to think about going and what we need to bring, do before we go, homeschooling the kids and more, it is a lot to think about, but we are trying to take it one day at a time, easier said than done most days.

Information on Fundraising Events in Rome and Boca Raton

2009-09-28T15:54:00.000-07:00

There are many wonderful things happening for our family in the month of October. We have two fundraising events about to happen.

For our friends and family in Rome, New York, on Sunday, October 18th there is a Cancer Is Not An Option Benefit being held. Tickets are $10 each and many fun things are happening inside the benefit. You can enter raffle for exciting prizes, get a chair massage, food and drinks, and you can also sign up to be a bone marrow donor. Even though you will not be signing up to help me since I am heading to transplant, you will go on the national registry and could me a match for anyone in this entire world and so many people need donors every day. There is normally a $100 fee to sign up, it is waived for attending the benefit and signing up there. It is being held at 1 p.m. at Stanwix Mens Club.

A car wash and bake sale was also held in Rome on September 18th and it raised over $1500, amazing for one day!

For our Florida friends and family, my dear friend Carla Simonet called me and told me she is organizing a spaghetti dinner and a raffle in our honor. It is being held Friday, October 30th at Advent Lutheran School. Raffle tickets are $10 and you can win many exciting prizes. Details on the dinner are coming and I will post when I have them. If you would like more info, or want to purchase or sell raffle tickets, email me directly and I can put you in touch with Carla. You do not need to be present or attend the dinner to purchase or win in the raffle, you can just purchase tickets.

While we won't be able to attend either events, we will be there in spirit and wish we could attend. They both sound like fun and exciting events I know our family would enjoy. We are so grateful for all of the support and help we are receiving.

The funds will be deposited into an account with The National Foundation for Transplants (NFT), and we will be using those funds to pay our expenses of living in Tampa for 100 days, my medical expenses, to defray the costs of a transplant, along with prescriptions that will be very costly after the transplant and so many more living expenses during transplant time.

If you are not able to attend an event and would like the help, there are two ways to do so. You can click on the photo link to NFT on the right side of my blog, it will take you to my page on their site and you can donate in my honor there online. The direct link is Yhttp://www.transplants.org/donate/kimberlyrusso. You can also mail a check payable to NFT Florida Bone Marrow Fund directly to the address below, remember to write “in honor of Kimberly Russo on the memo line:

National Foundation for Transplants
5350 Poplar Ave, Suite 430
Memphis, TN 38119

The kids were off from school today and it has been a very long day, I am off to relax and get some rest now. Good night!

Official Date is Set for Transplant

2009-09-28T11:26:00.000-07:00

The date is set for my transplant. November 1st I check into the hospital. I have decided after talking with the transplant doctor and my doctor talking with them to go with Moffit. While I will be one of the first ones there to have a cord blood transplant, I am not the first with the doctors who bring their experience with them. The biggest difference is in securing the cord blood and calculating the number of stem cells you are given, which the doctor who specializes in cord blood will do. Once I am given the cells, the procedure and things that go on are the same as a bone marrow transplant. Both Steven and I feel comfortable with our decision. We are going as a family, the kids are being withdrawn out of school and will be enrolled in a home school program for the 90 days we are there, my mom is coming with us to help and take care of the kids. We will most likely be going by the 28th of October so we have time to settle in the apartment we will be renting, get the kids set up, etc. On the 30th I will have a Hickman catheter inserted and we will celebrate Halloween in Tampa before I go in hospital. A cord blood transplant will require me to have full body radiation in addition to the chemo, I am a bit nervous about the radiation and chemo, or what they call conditioning procedure, but I think it is more a fear of the unknown that I am worrying about.

I am not going to require more chemo treatments before transplant, and each day I feel better and better, being two months from my last chemo, my energy is coming back and I am feeling normal for the first time in a long time. It is hard because I know I have October and then for many months after that I will not feel well or be like myself, not be able to go out to all the places I would want to, but I am enjoying this time right now. We have moved home and are settled in, we are enjoying being home and doing things together as a family.

I will be going to Moffit for vital organ testing on October 5 and 6th, this is two days of tests, from scans to bone marrow biopsy, taking a class on transplant, meeting with psychologists and social workers. I start at 8 am and my last appointment is at 5, the second day I end at 3 p.m. I go back on the 19th to go over the results, they need to make sure that you are in good health an have no underlying problems before they will take you to transplant.

We have a busy October ahead of us, I am glad that I will be feeling well and be able to get everything ready for us to move to Tampa, there are lots of arrangements to be made and plans to be put in place before we go.

Tampa and Fundraising

2009-09-18T05:49:00.000-07:00

We took a day trip to Tampa yesterday to meet with my oncologist and he has said that I will not need any more chemo treatments and can just go right to transplant. Giving me another treatment at this time is only going to risk me having major complications, and he was afraid that if something were to happen since you never know what complications can arise from each chemo treatment, then I would not be eligible for transplant and no one wants that. He said if the leukemia was going to return he thought it would return with the treatment or not. I am just fine with this decision, as I am not back to myself from the August treatment and ICU stay, I like the idea of having this extra time to gain my strength back, etc. before going into transplant. Also there is a lot to do with testing for me, at home getting us ready to go, and I need to be my best to be able to get it all done.

As of right now I am scheduled for October 25th at Moffit to begin transplant. Things are not 100% yet, my local oncologist will be talking with transplant team and doctors on Monday and then we will move forward from there. Moffit is an excellent transplant center, but they are just starting cord transplants, so basically I will be first one at the facility, which from what I can see could have many positives also. The doctors certainly have done them before, but because the facility did not have the doctor on staff there till 4 months ago they did not do them. They have her now and are starting them. We are going to make sure that I will receive the best possible care when getting my transplant.

We are teaming up with the National Foundation for Transplants and doing some fundraising. When I met with the transplant coordinator, the first thing that she told me was that we would need to raise funds to defray the living and medical costs of transplant. Everyone who has a transplant needs to do it due to the high costs, etc. I am in the process of getting all the paperwork together and the account should be set up soon. We will have an online account for direct donations and letters will be going out to all our family and friends, etc. When we go to Tampa, we have to move there for 100 days or more. We have to rent an apartment that is owned by the hospital where transplant families stay for $65 or $75 a day, plus we have to maintain our mortgage and home bills here, medical insurance, etc. so it can become very costly with us out of work. I was happy to hear there is an organization who helps you with this overwhelming task.

My parents and many friends and family in New York jumped on it right away and set up two fundraising events in Rome, NY for us. This weekend they are holding a car wash / bake sale. On October 18th they are holding a Cancer is Not An Option benefit. They have sold hundreds of tickets already, and they will be having a bone marrow drive for both me and another local girl who needs a transplant, raffles, food, prizes, etc. They are really doing amazing things and working so hard, it sounds like a really fun event to go to, and most of all it is helping raise a lot of awareness of bone marrow transplants, leukemia, etc. Today there will be an article in the Rome paper about the car wash and they are working on a feature article before the benefit raising awareness of how important it is to become a donor, etc. I wish we were able to be there to thank everyone that is helping us, but if all works out I will be in Tampa already and not able to attend.

For those of you who live in Rome and read my blog, tomorrow there is a car wash being held,
and all proceeds will be donated to our family. Each car is $5.00

FALCONE'S TOUCH FREE CAR WASH
1119 ERIE BLVD. WEST ROME, N.Y.
9-5 PM

Thank you very much to the Falcone's for donating the day to our family and to everyone who organized it, we don't know how to thank you for all that you are doing, it is wonderful and overwhelming. Steven and I are definitely the kind of people who pride themselves on taking care of our family on our own, and to have to accept help at this time is not an easy thing. We have realized that this is the most important thing we will do in our lives and are not in a position to refuse help, so we are opening our hearts and accepting it all and are very thankful we have so many wonderful people who care about us and our family and are willing to help us.

I will post more information as I have it when the NFT account is set up. The great thing about this organization is that for every $5,000 you deposit, they give you $1,000.

We are working on finishing up our home this weekend and hope to be home and get to spend the next 5 weeks there before we are off again for our transplant adventure.

Changing plans

2009-09-16T07:06:00.000-07:00

I got a call from Moffit yesterday regarding a donor for transplant. I was told that there are no adult donors compatible for me. They ran a search and four people came up. One was unavailable and the other three were only 8/10, they want 10/10. 8/10 is acceptable if they are matched in certain criteria, and these were not, so they know it is not OK to use them as the transplant will fail. They are recommending that I have a cord blood transplant, which is infant's cord blood. At this time this is my only option, I am okay with that, but it is changing my thinking pattern from an adult donor to a child that I am having a hard time with. I will actually receive two different children's blood to equal the amount you would get from an adult.

Moffit does not do cord blood's that frequently, so that has me concerned and now it comes into play is it the best hospital for me to go to? They have a new doctor on staff who did them at her old hospital and they are now beginning to do them more and more, she would be on my transplant team, but the nurse I was speaking with could not give me a lot of information. I spoke with my local doctor and he agreed cord blood was a good choice for me. He had a patient who had it like 14 months ago and is doing well, he went to Duke, so he is going to work with Steven and I talking to Moffit and ensuring that they are best fit for me, or help find us a place like Duke or somewhere else that is.

With cord blood, I will also have to receive total body radiation, which does not sound like fun to me. There is a higher risk of infection and your counts take longer to recover with cord blood. On the plus side, there is a lower risk of Gvh, which is something that happens after transplants, it can range from mild to life threatening.

Please keep us in your prayers for figuring all of this out, nothing is simple it seems we are destined to travel down a difficult road this whole experience. I want to ensure that I get the best possible care with doctors who have a lot of experience doing this so that I can have the best outcome. It does not matter where we end up, whether Tampa, North Carolina or somewhere else, as we are going as a family for the three months I have to be there, but when plans have been in place, to think about changing them now is overwhelming.

I have an appt tomorrow in Tampa with my oncologist to discuss when and if I need another chemo treatment before transplant. I will be just going for the day for the appointment.

Happy Anniversary Steven

2009-09-07T11:39:00.000-07:00

Today Steven and I are married 13 years, seems impossible that it has been that long, seems like yesterday we were just about to be married, with all of our family and friends watching. This year is a true testament to our marriage, especially the "in sickness and health part". The last two and a half years have actually been testing that, but with the transplant ahead of us still, we have a lot of fighting to do this year. I am very blessed to have him as my husband and have him stand by my side no matter what, taking great care of me and the kids at all times.

Happy Anniversary Steven - I love you and look forward to spending the rest of our lives celebrating our anniversaries.

Update on being home

2009-09-01T18:21:00.000-07:00

Today I been home a week, it has gone by in a blur and I can't believe that I have not updated. I am doing well, but both my body and brain are exhausted. Every thing I am doing is a chore it seems, but my body is exhausted and my mind too. My Mom and Aunt came to help out and they are doing a great job taking care of the kids, helping around the house and cooking and we are having a good time together. The kids are enjoying Grandma and Aunt Mary. Steven is working hard at night to get our house together, we are so close you can taste it, just the bedroom floor to put down and finish painting our bedroom and then I have cleaners coming Friday and Saturday since the house is filled with dust from sanding and plastering, and it is a way bigger project then we can handle. Tiles and things are coming in left and right and I cant keep up, things are moving along quickly.

Thanks for all the prayers and thoughts.

Out of ICU

2009-08-25T08:47:00.000-07:00

Today is a very good day, I am being moved to regular room and took me off all oxygen, and I am on my own breathing, I am very excited and ready for a shower and maybe a little sleep, I could still not sleep last night. The other great part is that the kids can come and visit tonight, can't to see them, just this morning Sofia called and asked if I was moving back to regular room so they could visit, bless her she can be so sweet and I can't wait to see them as well.

I am having no transfusions my numbers are raising great , which means I will be home in a day or too. So far without oxygen a few hours now my sat levels are, all great signs.

My Monday that did not work out...

2009-08-24T13:05:00.000-07:00

So my being home for the kids first day of school and mine and Christian's birthdays. At 6 am I woke up with a 103 fever, and had to go straight to the ER. Steven drove me and checked in and had to go home to get the kids from school. I was upset to miss their first day but Daddy did great and they had a good first day. I got blood cultures taken to see if there is an infection and got to a room later that day. I ran 103-4 fevers all day and it made have constant shakes and headache where I could not even my eyes, Tuesday cultures all positive for some serious bacterial infection I don't even remember the name of. My oxygen levels were bottomed out and the port was source of infection, so they take you to surgery and take it out immediately.

When I came out my breathing was still in distress so I was moved to the ICU. I had to go on 100% oxygen and from there the fevers and all continued. It was determined with scans that the Infection manifested itself as pneumonia in both lungs. "In here until last night it has been a huge battle, "I could not breath and my heart rate is so high, just miserable. I am on four very potent iv antibiotics around the clock, and still getting by blood and platlet transfusion's. I was so sick i lost track of if was day or night, and forget about sleep, none here so I am beyond exhausted. Steven has been taking care of kids with his Mom and working all day, he comes about 9 pm night to spend two or so hours with me.

Last night things turned the corner and I am feeling so much better, my oxygen lowered to a low dose and I am tolerating and after all these days can breathe wearing just nose oxygen and not mouth open, breathing like gives you cracked and dried lips and mine got so bad, have to slather them with chapstick constantly. Now today I am breathing well and feeling, fevers are gone, all my counts are rising great. If I manage my oxygen levels great today, I move to a regular room, and then hopefully not more than that I will be home. I am more than ready to feel good again.

This was a critical time and the time I have had being sick, I am so thankful to be getting better from it, this week was like a nightmare and scary.

Thanks for all the prayers that knew what was going on, they are working. I sure cant wait to get home to family and be able help out and spend time with all of my family.

Chqnge in plans and learning

2009-08-19T15:14:00.001-07:00

Things changed quickly i woke at 6 am with a 103 fever, so we had to go Eric. I was admitted to the hospital and will be here until my counts recover and infections gone. Cultures came back positive showing a bad bacteria infection. They belive it is my port, so tomowwow i will head to surgery to get my port out since that is where it is coming from. In past two days

i have endured high feverss, vomiting, and shakes and shivers, chest xray and ct scan. Today we added pain medicine to my regimine and it has made a huge difference, headaches are gone and fevers are coming down to a lower grade. Tonight for first time
i can feel myself getting better.

the kids did great on their first day of school and daddy has been aking them back and forth.
we celebrated with pizzand cupcakes tonight for Christian's birthday, it was great to have visit, i love right now that i am local and they can visit each day, the best medicne for me and them too.

Travels and Tranfusions

2009-08-17T13:34:00.001-07:00

Today started out with early morning travels. I am once again getting tranfusions today, but hoping to be done before they close at 8 p.m. and it looks like that just might happen. It is 4:45 p.m. and I am almost done with my second bag of red blood, and have to receive the platlets still, which run fast. I got up and was here at 6:30 a.m. for blood counts and type and crossing, then we headed home, expecting them to call around noon to say the blood was ready. Today was open house for Christian and Sofia, and as they were getting ready and heading out they called at 8:20 and said it was ready, my levels were critical to come right away. I could tell I needed both blood and platlets, when you need red blood you can feel the blood pounding in your heart and ears and that started yesterday and I felt so tired, plus bleeding whenever I blew my nose. This morning I discovered little red pechia dots on my legs, which means platlets are needed. I told Steven it is sad when you look forward to going in to get tranfusions, because you know you will feel so much better when they are done. And getting up early paid off, the bonus was the and blood was ready we could start earlier.

We stopped at school for Sofia's open house and were in and out in 10 minutes, she met her teacher, explored the room quickly, got her packets and we were out of there. Steven and Sofia drove me back to Coral Springs and dropped me off to start my long day and headed back home to take Christian to his open house - all before 9 a.m.! So Steven is at work, the kids home with the babysitter and everyone starts school tomorrow. I am doing my new job - sitting here getting the transfusions which are saving my life. I want to be doing so many other things, but this is most important right now. Next week once my counts recover, I am anxious to do some things outside of the house, the bonus will be feeling good and not being worried about catching everything. We are getting to the number of days after chemo where your counts start rising on their own, that will mean no more tranfusions or shots. Every night I have to have a Neupagin shot, which boosts white blood cells. You can call Steven "Dr. Steven" now, he does it for me and I have to say I am very impressed, after the initial first time of being anxious, I am not anymore and it does not hurt. He is so wonderful, there is nothing that he would not do for me, I am truly thankful for him, this is a stressful time for him trying to take care of me, the kids and working, and he is doing so great.

As a bonus for my birthday tomorrow I get to have no doctor appointments, blood checks or tranfusions, which will be wonderful break. After taking the kids to school, I think I will be taking a very long nap and then preparing for Christian's birthday which is Wednesday. He will celebrate with a treat at school and then dinner and a dessert of his choice at night. When my counts are recovered, we will have his party in two weeks or so. I will get an early blood check Wednesday so if I need tranfusions, I can be home at dinner time to celebrate with him. I am so happy that I have remained fever / infection free and not had to go back inpatient in the hopsital, I feel like I keep waiting for that to happen, but am thrilled it has not. Even though I am here all day, it is great to go home at night and be there for them in this big week.

And please if you are able to, go and donate blood soon, do it in honor of me and my birthday. I am here today due to medicine, doctors, science, etc. but without the blood tranfusions, I would not be here. It takes a small amount of time, but it is so vital to so many sick people. When I think about that between Friday and today's tranfusions, it took 8 people donating to give me those tranfusions, I am so thankful and can't imagine if they did not go and give blood and what if it was not available to me? It is so easy to forget that so many people everywhere need it and how critical it is to them when we are in the day to day of living our lives. I know I was guilty of that before Leukemia came into my life. If you donate, leave me a comment or email - I love to know how many others are helped.

And one more exciting thing before I sign off for today, our good friend Gene who came to the bone marrow drive to get tested got a call from the Be The Match Registry saying they needed more info and would like to talk to him. He is the first person from everyone we know that registered to be contacted by them. It does not mean it is for me, it would be awesome if he was my match, but it is also exciting to think that he might be helping to save another persons life who needs it somewhere in this world - I will keep you updated on what comes of it.

Closing down the clinic.

2009-08-14T17:21:00.000-07:00

It seems I closed down the clinic tonight. The blood bank made a mistake and did not irradiate the second bag of platelets like they need to be. After it arrived here and the mistake was caught, it had to be sent back. This takes time, lots of time to travel and do this. So it was picked up and I am now waiting in the recovery surgery unit with two nurses who are here still and who will finish my transfusion when it comes. This is where they put you when there is no one else here and I am appreciative that they are willing to stay, they are charting and catching up and I am emailing. This is not usual, but if it is unusual it will happen to me. I was to get two bags
and they wanted me to get it tonight, as tomorrow the lab is closed and to try and make arrangements for someone to do it would be near impossible, and I do not want to come back again after being here all day anyways. Being admitted to wait for the transfusion was not something I was willing to do, I have spent enough time inpatient here thank you very much and so I am here with two nice ladies, who even went and found me a sandwich and a drink and made me comfy while we are waiting for the platlets to arrive. And they brought two in case someone else was with me, the one time Steven is not with me - he is always looking for a good turkey sandwich :)

In the meantime my family spent the night having pizza together and picking out paint so we can start putting our home back together. The walls are back, mold is gone, outside is almost fixed and being painted. In order to move back in over next two weeks, it will need to be painted, the the wood floor reinstalled in my bedroom, and put our master bathroom back to one piece which has been gutted to no pieces as of right now. Then have it cleaned from all construction dust. It is alot of work, but once we go home it will have all been worth it, knowing we are going home to a healthy home. Everyone is more than ready to go, it has been two months, and we are missing the comforts of just our own home. The kids are ready for their rooms and toys, and just being in their own environment, and so are we. There is nothing like your own bed and I am missing mine alot.

Now that I have had a few quiet hours of rest, and time to catch up on my emails and blog, I think I am ready to go home now, sleep is calling and I don't care whose bed it is!

Catch up time

2009-08-14T15:36:00.001-07:00

Every day I think I need to update my blog, it seems as if I do, and then I realize I did not. Chemo can do that to you. Tonight I have some quiet time so I thought I would do just that. I finished up my consolidation chemo on Saturday around 3 and we drove home. While it was wonderful to be home, I did not feel well at all. This round left me feeling so ill, the steroid takes 48 hours to wear off, so I had what felt like shakes and uncomfortable movements for days, mixed with everything tasting awful and being beyond fatigued I had some miserable days. I think it was Wednesday before I felt like all was going to be well. It feels so bad not to feel well and have any interest in anything, and not want to stay awake to play or be with your family. I rounded the corner Wednesday, suddenly I could eat and drink again, food tastes somewhat like food again and drinking - well that felt great and since then I have been feeling better each day. I am exhausted, but at least feel like I can pick my head up and think, things that are pretty important :)

My blood counts have dropped, tonight as I type this post I am sitting at Coral Springs Medical Center outpatient center getting my first platelet transfusion. It literally has taken all day to get it done. I went to doctor at 10 am, then to hospital to type and cross my blood and order platelets, then wait till go back and they are ready. I was back at 3 pm like I was supposed to, but the two bags ordered did not arrive until 6:25. Only one of two bags is here, so while this drips, hopefully the second bag will arrive and run through before they close at 8 p.m. I sent Steven home to work and be with the kids instead of sitting here with me. This is what I will do for next week or more as I need outpatient transfusions. When I need red blood cells they take 6 hours or more I been told to transfuse once started, so we will be coming early Monday am at about 6:30 to start the process, then go home and wait for the call they are ready. I will spend the day here getting the transfusions, while Steven works and the kids are taken care of and then start school. I will wait until officially ready and here before I come and sit and get the transfusion. Outpatient is great, you go home, but I still see some long days ahead of me.

Even with all medical things we are tackling each day, life still is running regularly at home. School starts Tuesday, everyone is all set with clothes and supplies, it was exciting to shop for Sofia this year also, as she starts kindergarden. She is very excited and proud to start, and Christian even offered to walk her to her class when she was worried how would she get there. I love that at times they can be so caring towards each other, most times there is lots of bickering and fighting going on. I think those two spent way to much time together this summer. I have already met with Sofia's teacher who seems so awesome, she knows our family and Christian from when he went to summer camp and we talked about the summer the kids have had, our situation, etc. She was so great about it, I feel relieved knowing she will have such a loving teacher. Christian found out his teacher today and Monday they have open house so they can meet their teachers before the big day on Tuesday. Our situation is unique in that the kids will start school and stay there till we are ready for transplant. When it is time for me to have my transplant I have to be in Tampa for 3 months and live there, and we are all going to be there. The kids will be home schooled during the three months but go back into school when we return, no easy feat, but they can not be without us or vice versa for that long. Since that is at least a few months off, we are focusing now on the fun of the new school year. Despite their Mom being re-diagnosed with cancer one day after summer break began, I think they had a pretty fun summer and they are happy, I am very thankful for that.

On the transplant front, we met with the nurse coordinator while I was at Moffit. She gave me a BIG booklet to read, I can not yet bring myself to open it, it describes the entire process, etc and right now that seems to overwhelming. I am in the database, they are searching for a donor, next week we should have pre-liminary results of how many potential donors come up. It can be a lot or a little. From there they start screening, seeing who is best, contacting, etc. There is a lot involved and it can take months, but at least we are started and should have some information soon. I will be sure to update when I know more.

Right now I am focusing on this day and tomorrow and getting my counts recovered and feeling better before I can think about another round of chemo to keep me healthy or transplant to keep me healthy forever, seems easier this way.

Day Three of chemo

2009-08-06T11:42:00.000-07:00

I just got hooked up to my chemo drip, day three of 5. it is going quick, but side effects also came quicker this time too. My blood sugar has been rising and today i started insulin again, it is a drug induced diabetes, and it comes from the steroids i am taking a few times a day with the chemo. It should last for 48 hours after my last treatment, last time i was here it was longer, about a week, so we shall see how long it will last this time. I might have to check my sugars at home and inject myself with insulin. I don't feel any different, but my sugars are high and I have to check it before I eat and then they give me an insulin shot. The nausea is really strong, I have to have ask for additional anti nausea drugs a few times a day in order to eat. My tastes are starting to diminish already. I am not happy it happened so quick this time, but maybe it will go away quicker. Other than these two things, all is well. My counts are steady still, they will start to drop 7 days after chemo or so.

The kids are keeping busy, and spending today at Wannado City which they love, it helps that we know we will be home Saturday, it made it much easier to leave them this week and for them to know that we will be home soon. When my chemo is done around 5 on Saturday I am free to go, so we will start the drive home and be home for bed time. It is still hard to say goodbye and talk to them on the phone, you just miss them so much. Olivia is really funny on the phone, she gets the most excited to talk to you and tell you about her day at school. Then she said to me yesterday you go doctor, I said yes, and she said you have your puppy. Puppy is what she calls my port when it is accessed with the needle, it has a cord that hangs out for the drugs to go into, and she calls it my puppy. No idea why, but it awful cute. When I get home she looks for it, and then says I have a boo when there is a band aid on there, and your puppy went bye bye when it is gone. She is so observant for a two year old.

Back at it again ~ consolidation chemo time

2009-08-05T06:35:00.000-07:00

We are back at the hospital and the medical stuff again. I came on Monday and had outpatient bone marrow biopsy with sedation, a mid line placed in my arm and labs drawn. The biopsy went well, my left leg was radiating and hurting after procedure for a while, but that ended when they put the mid line, or a more permanent iv line in my arm. I have had alot of lines and alot of problems with those lines. My arms are very scared from the chemo and do not accept and open up for the lines to go in. Last time it was not an issue, but this time it was and it hurt and I could feel the line she was inserting hitting the veins. A second try and she got it in, but then she put the lumen's on and then two very tight bandages. I could feel she hit a nerve or something was wrong it hurt so much, so rest of the day I could not lift my arm and was pretty miserable. After leaving the hospital we got something to eat and went to hotel to sleep and ended up sleeping off all night and resting which felt great. The next day it was a little better but still tingling in my fingers and hurting. I had an apt with my oncologist and he said that my preliminary biopsy results showed that I was still in remission and it looked good, which is always a relief to hear. My blood counts are recovered and I am very healthy in that aspect until they start to fall again after this next chemo round.

I was admitted around 1 p.m. and chemo began at 3 p.m. with pre-meds and fluids, then a 10 minute push of chemo drug synesis and then a two hour iv drip of cytarabine, a second chemo I receive. Last night and this am I have had alot of nausea, but they give you something each time it comes back, I was finally able to eat a small amount of breakfast, seems like the nausea hit sooner this time - yuck.

I will be here for 5 days, last chemo Saturday afternoon and when it is done I am free to go home. I will work with my local oncologist to manage the side effects, transfusions, etc. at home and hope that I remain fever free and can stay out of my local hospital. My history is that I have always got a fever, but I am optimistic with all the antibiotics i will take, and me staying in the house except for doctor appts and minimal going out around people, I will be able to stay fever free and home.

When life gets busy...

2009-07-28T04:47:00.000-07:00

Life at home is busy, to busy in fact to let me have a chance to get on the computer. I awoke early this a.m. and no one else is awake yet so I hopped on and caught up on my emails, etc.

Things are going well, last Friday my oncologist said that my blood counts achieved official remission status, and they are stable and rising each blood draw. I am feeling well, I get tired quick, but other than that feeling well and doing lots of normal things which feels great.

I go back to Moffit on Monday August 3rd for another bone marrow biopsy and then on Tuesday I have check ups with the clinical research team and the oncologist there. They are working on my appointment for Tuesday also with transplant team. Based on results of bone marrow, I will be admitted to hospital most likely Tuesday evening for 5 days of chemo, consolidation chemo, to keep me healthy and in remission. After I am done, if all is well I will be released to come home, where I will see my local oncologist and monitor my falling blood counts, get transfusions, etc. all at home, with hopes to stay infection and fever free and stay out of hospital here. Once I get back I will be laying low when my counts are low and hanging out at home only to stay healthy.

The kids are doing wonderful, busy as always. We been trying to do lots of fun things and it is wonderful to see them just having fun. Sofia and Christian have become great swimmers, deep end and all. Last night we took them to YMCA swimming and Christian got to go on the water slide they have in deep end all by himself, over and over, he loved it. Even Olivia is doing well with the water and had a ball.

Thank you for all the continued positive thoughts and prayers, we have a long road ahead of us with the next chemo's and then transplant, but are enjoying this down time right now until next leg of our journey begins.

Home Checkup and A Relaxing Weekend

2009-07-18T13:06:00.000-07:00

I went to my local oncologist yesterday for my 1st check since being home, my counts were good, my anc that needed to be over 500 was 700, and should be to 1000 by Mondays blood test, then they say you are in remission because your counts are fully recovered. Right now I am set to go back to Moffit 1st week of August for another biopsy, checkups and 5 days of consolidation chemo - we have to keep me healthy and in remission now that I am there, the dates are not final yet.

We are enjoying our time at home, doing mundane things like grocery shopping, taking Livy to school, banks, etc. I went with Steven to his office and met alot of wonderful people I heard good things about, we were at doctor yesterday with all waiting, etc for three hours, and then last night we celebrated Sofia's 5th birthday with a small party, the kids had a blast, and it was really nice to see our friends and their families and visit. We had a slip and slide and anotehr small water slide and the kids entertained themselves with that, a pinata was fun too. Everyone was exhausted at end of night, I was in bed by 10 and slept till 8, longest for me in a long time.

We relaxed today and I even got a nap, which felt great. Being home is wonderful. Hope everyone is having a great weekend too! When I download the photos from the party I will post, it was wonderful to see the kids having such fun - and see it for myself and not through photos.

Home and busy - sorry for no post

2009-07-15T19:19:00.000-07:00

Yesterday at 2:30 the doctor came into my room and said that my biopsy results came back at 1-2%, totally OK and acceptable and I could go home immediately. Now we live 3 hours away and had no rent a car, but that did not stop us from getting out of there immediately. I called Super Shuttle, a van service and they said they could be there at 3:45, I then booked us the 5:45 flight from Tampa to Ft Lauderdale. Doctors gave orders, prescriptions, took the needle out of my port and we threw it all in our suitcases and left. We got to airport and it was delayed half hour, so we had a quick bite at Chili's. On the plane I wore my mask to prevent germs from getting me sick. My counts still were not totally recovered so I was sent home on few antibiotics for a week and I will be heading to Dr. Aliff my local oncologist Friday for blood counts, and see him 2-3 days a week. Our friend Chris picked us up and we were home by 8 p.m. and totally surprised the kids, there was lots of jumping up and down and giggling, we had a great night together and there are no words to describe being home with them and just being Mommy again, good thing is they don't miss a beat and put you right to work!

Today was busy but I feel pretty good so we were able to have a nice breakfast, play, showers, and then the big kids went to Chuck E Cheese with Amber and Olivia and Steven and I went to grocery and ran a few errands. We all came home and we took a nap and then had a great dinner, it felt so good to cook and have a great home cooked meal together, and then we went for a nice walk around lake we have in our neighborhood. That did me in, I was exhausted, but pushed ahead, both Livy and I were ready for bed and tired, but we made it home and it is nice to relax in cool air conditioning.

Things are back to normal right away and that feels good, this is why this is the first chance I had to get on computer since we got here, we have not even had a chance to unpack yet! We are taking this week to just be together as a family.

My tentative appt at Moffit is June 30th, I have to have labs, another biopsy and an scheduled to be admitted for my consolidation chemo for 5 days. If all goes well, I will be home after 5 days and then do my transfusions, etc that take place once counts fall at home locally with my oncologist. Since the kids are not in school yet, we are planning on all going for the 5 days, no reason to leave them behind if we do not need to. We will also have a meeting with entire transplant team to find out how all that works. They took my blood on Monday and are starting the donor search, it can take awhile, but it also could be quick, so no idea when that will be. Consolidation chemo's are required every 6-8 weeks to keep me in remission and healthy till transplant.

Thank you for all the prayers and well wishes - they worked and I am healthy again and home being Mommy - right where I need to be. I am not sure if I will get to update each day, but will try my hardest.

Good night!

So close, but just not there....

2009-07-13T18:56:00.000-07:00

Today was that day when you are so close to something you can taste it and imagine it and yet you are just not there. My numbers doubled, neutrophils went from 120 to 270, need to be at 500 to go home, everyone even doctors seem to think that will be tomorrow. I am having my biopsy tomorrow at 9:30 a.m. and will have results of my blood early in the a.m., if they are there where they need to be, I will be released to go home. I am so anxious, I am more than ready. Tomorrow is day 26 in hospital, and day 27 away from home. One month is more than enough. We have not told the kids anything, we are planning on surprising them when we get there, I can think of nothing better to do, since we have not given them a time frame when we would be home. So "shh" if you would be around them or see them tomorrow or next day if counts were not where they were.

My counts will be high enough, in fact much healthier than when I came in here, I will be able to do what I like when I feel up to it. I know realistically I will be fatigued, chemo is hard on the body and feeling good around a hospital is totally different than feeling good being Mommy, but I have lots of help and the kids are occupied during the day so I can get some good rests in. We are more than ready to go home and lead somewhat of a normal life with our family.

When we go home, we are not going home to our house. I don't think I even had a chance to mention it yet, but a month or a little more before we found out I relapsed we found out we had mold in our house. We moved our bed to clean back there and found a baseboard that did not look right. Steven called insurance and they came out, we had black mold, the bad dreaded one. From there and having a company come in and air and sample test, we found out we had it in several places. Our playroom and office the back walls had moisture on tests and on air quality tests, plus our dining room under the window showed moisture. Our master bathroom the shower had leaked over a year ago and we stopped using it till we could get it fixed, so when they came out for other stuff I told them about it, sure enough mold had grown on wall behind shower in our closet. The kids bathroom started leaking from using shower so much and sure enough you guess it, there too. So insurance got us a company to clean it and we were set to fix it all, if you are going to do it, do it all at once and we were told we had to move out anyways during cleaning. When we found this out, we asked our friends across the street if we could stay in the extra house that they have, and rent it from them and they said yes, so when we found out we were going to Tampa and the kids were staying, knowing work was coming up, we moved them and all our personal stuff and toys, etc. and spent a few days well.

The mold was all removed last week and the walls in all those rooms were ripped out down to the studs, and cleaned of mold. Monday the company comes back in to test walls and air to make sure there is no mold in the house. We have a company coming out to fix outside walls and stucco to make sure it does not leak again. We have a crack on our back wall and the other rooms and t he decorative bricks on the house water was leaking into them and the walls in dining room and ends of house, so they are off and house will be repainted outside. Once air quality comes back clear, we have a construction company coming in and putting up new drywall, plastering and sanding and then finally we will need someone to clean every inch of the house, the dust will be a disaster. Rooms are blocked off and sealed but all that sanding in 6 rooms, oh how I am glad I can not see it, I do not like construction at all or seeing my house a disaster. So when we are ready to move back in, it will all be new, my bathrooms will be remodeled in the process and it will all be clean, that is a way to move back in. We are very grateful to have a wonderful place to stay, where we can watch work and kids are comfortable, I am not sure they will ever want to go back home, they are content where they are. You definitely realize how much STUFF in your home you do not need, I see a good cleaning out coming in our future!

Please pray for easy bone marrow biopsy tomorrow, I will be awake with local because I did not want to wait for sedation on Wednesday, I have done it many times before, but this is my first time with a new doctor, etc. and pray for neutrophils to be over 500 and I am home eating dinner with my sweeties tomorrow. Your prayers have worked and brought us through a difficult first leg of the journey - thank you!

Sleepy Sunday

2009-07-12T10:27:00.001-07:00

Today and yesterday since Steven has gotten back we have been resting and napping, which feels so good. It is wonderful to have him back with me, it was getting lonely here without anyone. Since I have been here and all this started back on the first day of off test results at my doctor I have just not been able to rest, my body wants to and does, but the mind, it keeps going and going even when you don't want it to. I seem to be able to rest now and was able to take a short nap yesterday and one already today. Steven has been going non stop and hopefully can relax and catch up on sleep a bit before we get home. Once we get home, the rest stops when you become Mommy and Daddy full time again and work for Steven, so we are catching up some today and having a sleepy Sunday.

Blood counts are still up today, WBC jumped to .97 and my neutrophils went from 70 to 120, neutrophils need to get to 500, and they jump quick, so tomorrow could bring that magic number or next day. I can feel my body working, when you make marrow and cells, your hip and pelvic area and down your legs hurts, I started getting uncomfortable yesterday and I remembered that from my first induction when I told doctor my back was hurting and he said it was a good hurt, doc today said same thing, so I can take something if it becomes really uncomfortable, but I love knowing my body is gearing up and getting healthy in there.

Christian, Sofia and Olivia spent the day with friends yesterday and were exhausted at the end of the day. They went swimming and played hard for most of the day, they got home around 7:30 and Olivia went to sleep immediately, she did not get her nap and she is a napper and an early to bed girl. She got to play with her friend Justin who is turning two very soon, and Olivia can be quite bossy with him, little Justin loves her and listens to her, they are quite a pair, and I love she has a buddy her age to play with. Christian and Sofia played with Amber and Reese and Alex, and they all get along so well, what a pleasure to know they are having a great time for us, my only regret is that Steven and I are not there hanging out too with friends and our kids. Here are a few photos:

Alex and Christian with Lego they built, both are Legomaniacs!

Livy playing with Staci

Amber and Reese - sweet cousins

Yummy lunch after swimming

I love these action photos. Reese jumping in

Alex taking his turn

Christian - I love his expression in this photo

Amber in the deep end

They had good time soaking with the pails and Christian got Nina good

Olivia and Justin in the little house their size

Thank you very much to the Swab and Aron's for spending a wonderful day with our children and being so great with them, they had a great time. Love you guys.

Sunny Saturday

2009-07-11T07:25:00.000-07:00

Today is finally a sunny day in Tampa, seems like it has been a few days since I saw the sun out the window. Everything remains stable here, my white blood count went up to .86 from .51 yesterday and my neutrophils which they now measure are at 70. Still have not gotten a straight answer what they need to be, but I know when I was first diagnosed they were at 52, so that is a great sign, and that they are back at all after chemo is a great sign. Red blood moved up a bit and platelets too, no transfusions, I doubt I will need anymore now, counts are way to high for them. I was taking two mouth rinse medicines a few times in day still even though my mouth is healed and went down to yesterday. So nothing new to report today.

Here are a few photos I snapped of my new room I moved too, it really is beautiful for a hospital, and I thought the old one was nice too.

Bulletin board with dates

My little card area with cards I got

Part of bathroom

Recliner and table where I do all my stuff

Love seat that has pull out bed for Steven and gues and window which lets in alot of light

My bulletin board in front of my bed with photos of my family, hanging off are the cranes we made in art program. Still need to post the story of why they are important.

View from door when you come in

So now you can see where I have been last few days and will be when I return for transplant.Hope everyone has a great day!

High Counts and Cute Photos Friday

2009-07-10T07:32:00.000-07:00

Friday started out a good morning. I always get my blood taken by 4 a.m. so they can have the results when doctors do rounds at 7:30 a.m. The early a.m. is hard because you are sound asleep and they come in and wake you, with my port they don't wake me to take the blood or hook up and disconnect antibiotics, they just do it and you sleep through it. They wake you because they need to weight you. In old room in the middle of good sleep you have to get up and get weighed in hallway with bright lights. Normally I go back to sleep, but in this new room the scale is in bed, so I had get up and then lay back down but this new nurse I never had turned on the light, talk about blinding, and was chatty. No chatting at 4 a.m. is ok. They don't know how to use the scales and needed light. So as a result when I tried to get back to my good sleep I couldn't, so I rested till 7:30 and got up, I think I will need a nap today.

Good news - nurse brought in my lab report and my counts soared from yesterday.

Yesterday White blood cells o.36 or 360
Today White blood cells 0.51 or 500
They hit that magic 500 they want to see, now they start measuring today the ANC, or specific types of white blood white cells. My neutrophils, the infection fighting white blood cells. When they hit 1000 I can go home, as long as biopsy results are still OK. When cell.s start rising on their own, they soar and quick, so tomorrow they can double again. I will know my ANC's later today.

Yesterday's Red blood cells 3.99
Today red blood cells 4.21

Yesterday platelets 15
Today's platelets 28
Platlets is the blood for clotting

These are great rises and no transfusions are needed. Most likely I am done with them unless they go down for some reason, from here on out numbers are expected to go up and up. I am thrilled with this, my body is recovering from chemo and making healthy cells, most important those white infection covering cells, and it is doing it on its own without help from shots they give to boost WBC. They wont give me the shots and that is OK, they cause quick regrowth and could spure Leukemia cells esp when I still had 5% blasts there on last test, so I would not to take my chances anyways. Doctor scheduled biopsy for Wednesday originally because Monday is full. I said what about Tuesday, he said you would be awake with something to relax you and not asleep and I asked him to change it to Tuesday. I don't want to wait a day just to be asleep. I did it 4 times awake and 3 were with nothing to relax me. The last time in June at home I took something, and did ok, so I think I can handle it, especially if it means results a day earlier.

As for the cute photos part of today, here are some photos from the kids visit, not to many and not my best, the lighting in a hospital and perpetual motion of the kids makes for not clear photos but still fun to share and I love seeing them. This blog is all parts of my life, good, treatment details and family stories and details. They really are more interesting than my Leukemia issues and way cuter, for sure they will bring a smile :)

Working on art projects

Sofia's birthday morning ~ getting a gift from Mommy and Daddy

Playing around in the room one day

Olivia so proud of her Cinderella pullups

Playing with sweatshirts and hoods, Christian would rather play legos than get his photo taken

If you have to be here, this is how it should be

2009-07-09T08:53:00.000-07:00

I moved my room, I am now in 4west - the bone marrow unit. It is brand new, the room is large with so much more storage, etc, but feels more like a hotel room. So this was a good move for the rest of time I am here and it is to have a sneak peek to see where I will be for transplant. A big difference also is when I am on this part of my wing, I do not have to wear a mask outside of my room, like if I walk around the wing, need to go out and ask a question or go to kitchen area, the whole wing is specially air filtered and rooms are too to be safer for transplant patients. When I leave the big double doors I do have to wear it as normal. I am so impressed with the hospital as a whole, it really is a wonderful place to be when you need it. I will take some photos of the new room too if I can get them to download then I can post them. I posted my new room and phone number on the side bar.

Counts are steady today, no transfusions again, I will have another biopsy between Monday and
Wednesday of next week. I did get a good nights sleep and went to bed 2 hours earlier than I been, got up early and showered. I am keeping myself busy while Steven is away with some paperwork I need to do, my computer, etc and the day is going by quick. I took my first venture around by myself to gift shop to get some stamps and just walk around, I will go back out later and walk more, although I have to say I miss my walking partner and will be happy when he is back. Mouth sores are gone, mid line is my arm is gone and insulin checking and shots stopped two days ago. So it is good that medicines and things are stopping instead of remaining. I am still on antibotics both pill and iv a few times a day, and other antifungals, etc but not like before, it is tappering down. I am allergic to the adhesive in the bandages they use to cover my port, today they changed the needle and made up a bandage with gauze and papertape to give my skin a chance to calm down, the tape causes redness and blisters, so hopefully this new type they made will be better and allow my skin a break.

Everyone is doing well at home, the kids were happy to be back and acted like they were away forever when they saw Christina, their friend next door. Olivia went back to "kool" as she calls it, with her bathing suit on and her usual smile for water day. She absolutely loves her tot-time class and can't wait to go, which makes us feel so good about her being there each day, only thing don't mess with her lunchbox, it is been her security blanket since she went, she must be in charge of it, carry it, and everyone at school knows this too. It is hysterical, she is so funny at this age, her personality is just blooming. Christian and Sofia were happy Amber was back and they were off to Boomers for an afternoon of playing and fun.

The plane service I was talking about in my post last night is actually three companies, one is Angel Care and there are two others. Pilots give of their time and plane to fly patients, but it is a prop type plane, that always makes me nervous, but I am sure that after all of this, that too will be normal to us. I have to call and register myself with them and it is based on available flights and when you are going, etc. so not always available, but a wonderful service for companies to provide that I am thankful for. I am sharing some photos I took from my phone while the kids were here, blurry mostly but still cute to me.

Olivia playing blocks at open art program

Playing musical instruments in art room

The girls on a walk around main part of hospital

Amber and Sofia playing with my phone making muscle faces

And peace signs

In the cafeteria for dinner and making orange faces

Thank you for the comments, I can not comment back and if I leave a comment, unless you have a google account it will not go back to you, there are many of you who leave comments each post and I read it and want hit reply and chat back but it does not let me do it, so I will have to email you! I enjoy reading them.

Staying the same is always good...

2009-07-08T16:17:00.000-07:00

I just spoke with the doctor and with additional testing / staining of my marrow and advanced slides I stayed at 5% - woo hoo. No jump, I am so pleased with this. They still can not say for certain whether this round of chemo achieved remission till closer to day 30 or when my counts recover(day 19 now) and they do bone marrow biopsy. So for now we wait, and get better. Today I needed no transfusions, first day since my count plummeted, tomorrow can definitely be different, I am just hoping that the bell curve they talk about is on the upswing part and I see count recovery and clean marrow next test. That will mean if it is clean and under the five percent I go home, over etc we will talk about more chemo right away or if it can wait a month,, two weeks, etc. I just want to go home for a break. When I do go home either way, I will be coming back here for a visit anywhere from once a week to every two, etc. They have three private agencies that we need to register with that fly on their private plane free of charge from Boca Raton Airport to Tampa, so that cuts the expense of flying and driving, or we drive the 3 hours. Steven and I know that is part of the deal, but to be for the day and be home at nighttime is great. I will be under the care of my local doctor when home with orders from here on what is needed, etc. I will be home till donor is found and it is time for transplant, most likely it will be months, I like that.

Thank you for the continued prayers, they are working and this is really good news. This experience is teaching all of us a lot of patience and faith.

My babies are home and ready for bed, Daddy too, he is exhausted, I am heading there too early tonight.

Photos and The Kids Trip

2009-07-08T13:32:00.000-07:00

Today is a hard day, my family headed home around noon and just got home now. Steven's Grandmother really needed his Mom there due to health reasons she has, so we made the decision that today was the day, we knew they could not stay for a very long time, but the 5 days we had together were a lot of fun and very well spent together days. Everyone needed the time together and today Daddy drove them home to get them all settled back in. He will be coming back sometime before end of weekend. I am doing so well medically this is the right time. There is never a right time for the heart, and I have been together 18 years and not spent a night apart, tonight will be first. We are OK with that, we are in that situation where it has become time and I feel great about him being with them, they need at least one of us to get situated and back into routine. Daddy will return and they will go back to doing what they were before till I get home, which at most hopefully will be a few more weeks. They can visit again too, 3 hour drive is still close. Our sleepover went well and Olivia did great, what a feeling in a hospital of all places to wake up with your entire family here. They had breakfast and showered before they left, it was nice to be a part of all that. Saying goodbye or hello after an absence is so hard, this goodbye was harder than last but I know I will see them very soon.

Here are some some photos that Chris and Nina took the day the kids got here

The next day they went to Science Museum and had some fun

Wind tunnel - I love this photo

I have some photos I took while they were here I am going to work on downloading, but I did not take a lot like I usually would, my attention was more focused on spending time with them. I have heard nothing more about the slide today, still hoping doctor comes in they say they come late till 8 or 9 pm. For now I am just relaxing and going to get a good nights sleep hopefully, missing everyone at home much.

Good news, but still waiting

2009-07-07T19:57:00.000-07:00

Sorry to make everyone wait and I know everyone is anxious, we have had a very full day today, and we are having a sleepover again tonight with kids- this time Livy included, not sure how much sleep anyone is going to get, everyone is in pajamas and laying down calm so that is a good start.

The results are in - sort of. In order to say chemo worked they want under 5% cells in your biopsy. Mine came back smack dab at 5, one person counted 5 and one 6. It is very scientific and techniclal. This is good news, I had 80% start, it means it worked and is still in there working, but did it work well enough, that part is not known. We are right there, they did extra staining of slides and I was supposed to know today did it stay, rise, etc. They said now they did another, so it is just to close to call. They dont joke around about any of it. So we got great news with i wt coming down, but are in the wait and see phase. Leukemia is just tricky and very involved, it is hard to say was it to soon to do it, they did day 12, you do it day 12-14. Today we were told if slides jumped up to 9 or more or so, they would most likley recommend more chemo, called a 2nd induction. They did not but are doing more, to me that is good, did not jump, just can not tell them either way. I am ok with that.

Even if it was under five percent, they would being doctors not say remission until your counts recovered, I always just understood that they would, that is the tricky part again, see how many there are. I am trying to break it down from scientifc to tell you, not sure how I did.

So we wait, for that slide and then for my counts to recover more, and do another biopsy, when cells grow back

Quick Update Monday

2009-07-06T15:24:00.000-07:00

1. Results are not in, late tomorrow expected.

2. Sofia had a good birthday

3. Hair the s all gone, I cut remaining little off today, it is a relief not to see it falling out anymore.

Everyone here is overtired and exhausted so we are making an early night of it all around, we all need some much needed sleep and start fresh tomorrrow.

Will update when we know more tomorrow evening is when I been told to expect results of my biopsy.

Sunny Sunday!

2009-07-05T18:34:00.000-07:00

We had a really good day today. The kids did so well last night, our adventure included a midnight hike with all of us to the basement vending machine for snacks, we heard alot of I'm sooooo hungry" when we were trying to go to sleep. We did eat early and we had forgotten their snacks at hotel, so all four of us and the IV pole too went and got some chips. After that they fell fast asleep and slept till 8:30! They had breakfast here and then went to get Francine and Olivia. We hung out today and ate lunch at cafeteria, we said a quick goodbye to the Swab's as they went home this afternoon, then they went shopping with Daddy for some things, and they were treated to a new Lego set for Christian and Sofia and a Mrs. Potato Head for Olivia and some nail supplies for Sofia and I to paint nails tomorrow. We shared dinner again here, we were practically only ones there with holiday weekend this place is beyond quite. I need to walk around a few times a day and tonight we ventured outside, the kids had a lot of energy to burn and I did not walk all day, so we went outside and they have a beautiful sanctuary garden and fountain, so they got to play outside. They have a big hill and stairs that go to top floor of building, and they ran and ran and had fun, throwing pennies and making wishes. It is hot here, different hot than home, so they were ready to go inside and we were too, so we headed inside for a drink and rest.

It felt good to be outside again! There are no restrictions, I am allowed to be free around the facility, I have to wear the paper mask to prevent myself from catching anything, I can even drag the IV pole if I want to. I don't like that though, so I wait till I am unhooked. So we had a good time outside and the kids made amazing wishes. You know you are supposed to keep them secret, say it in your head, Sofia said it out loud and Christian too, let me just say we must be doing something right, they said the right thing, and throw a little wish for a pony in there too and everything is good.

Health wise for me, I am doing well as they want to see, complications are minimum, and I am feeling pretty good. I had a platelet transfusion today and some potassium, but got taken off IV liquid since I am eating and drinking again. I get antibotics a few times a day IV, mostly one in the am and then through the night for the fever I had. My mouth is better, I swallow this liquid medicine that heals it like 6 times a day and I can eat, I even at a chip today! My stomach pains are gone. Don't get me wrong, I am exhausted and worn down, but still feeling good if that makes sense. The kids even let me do what I normally do and clean up after them, amazing how toys and drinks accumulate quick with three little ones. It feels good to do something normal, being with them makes it feel like home. My white blood cells went up a little bit today from .23 to .40, but hey- they went up and they did it by themselves when they should, and although a very, very, tiny number, and I know they fluctuate, I will take it. It means my body is done tearing down to rock bottom after chemo and now will start up swing to get blood counts back to healthy.

This is a great place and I feel so good about our decision to come here, and no other small hospital is so amazing about visitor policy, the kids asked to spend the night again and we said OK, it will be nice to wake up with my birthday girl. Sofia turns 5 tomorrow, I wrapped her present and hid it for her in the am. We will celebrate tomorrow by painting nails, playing, Daddy taking her to pick out a birthday cake and ordering dinner in and celebrating with her. Plus from 1-3 they have open art where you paint and do crafts for patients and families, and she wants to do that, she has seen all the art work around and want to know when can she do it, she loves painting.

You would think we were at home with activity level, but when they head head home at end of week, we will have two tired parents, really Daddy more exhausted than Mommy doing all the work and a fun week with them and good family memories - got to make'em where you can - even if they are at a hospital, Hopefully it should only be a week or two at most before we follow and are out of here, and then we can all be together at home sounds good to me!

If you make it to the end of these long updates your are good, I get long winded when I write. Alot of people can't read the blog because it is hard to read, but please dont be sad, and know in a bad situation, there are so many good things that are happening I could not name them. Love, family, friends, support, more awareness to be a blood and bone marrow donor are just a few. God shows us in strange ways doesn't he sometimes, but my attitude is real and I do believe all will be well at the end of this long process, there is no reason to believe any different, so many people have transplants each year, I love to hear when they say so and so had one x many years ago and they are ok, I know that will be me to. For immediate future we are traveling a hard tiring road, but the long run we will be any other family, only really, really more aware of how lucky we are each and every day.

My friend Nina who was here said it was good to see me in the hospital, I look like me, just here getting treatments, Natalie asked me what I wear or if I go out in the wheel chair, all valid questions, to which I answer I never wear the hopsital gown, not a fan of that, only once since I got here for my biopsy did I wear that, I wear relaxed MY own clothes and shoes, and I walk outside, etc. only a wheelchair when they wish you away for tests, etc. hospital policy, otherwise they want you up and mobile, walking and using your muscles, or they go weak. Now feeling good at home vs a hospital are two totally different stories, I know when I get home how fatigued I will be, but I will be resting alot!

I am waiting for my three sleepover guests to get here - goodnight!!

Happy July 4th

2009-07-04T18:39:00.001-07:00

Although we did not celebrate in the usual way here, today was a really good day. I had a red blood transfusion that went smooth, while I did that Steven, Francine, Nina and Chris went to the Mosley Science Museum for a few hours. Then my family tracked to a Whole Foods store and came back to the hospital to spend some time with me. They ate lunch and hung out in my room and then we had a late dinner in the family room, where they have tables. Nina and Chris ended up visiting and the kids ran around and had a good time playing, amazing how they can play anywhere with anything. The only normal thing is me sitting there with my IV pole, which I was on fluids so I had to drag with me. But despite the medical things going on, it makes it feel more normal to have them here. Steven is tired, he has to do alot of running now and I know he loves having them here, but he has been going non stop, never complaining though, I am not sure how I got so lucky to get him.

Steven is taking his Mom and Olivia to the hotel for the night and the kids are having a sleepover in my room. It is allowed, as long as there is another adult besides myself, and they are quite. They wont be back to after 10, so it is pretty much lights out when they get here, we are hoping after a full day they will watch a movie and konk out till a.m., despite the many awakenings that go one with me all night. It was the one thing they wanted to do and since it is allowed, I was happy to say yes, hopefully Olivia wont feel to left out.

Monday is a big day here - it is Sofia's 5th birthday. We will celebrate with some presents and a treat, and once we get home we told her we would have a small party, she said she was OK with that, such a great girl and simple to please. Hopefully fingers crossed the biopsy results come in and are the way that we are praying for, and lastly I will be shaving my head. My hair is falling out rapidly and if the in house salon they have were open today I would have had them do it, to me it is awful to see it coming out, so I am hoping they will be able to do it when they open back up and I am ready to just move on. We knew it would happen, it is and I am ready just not to have hair everywhere. Yes it does bother me, but now that it is a reality once again, I have that just get rid of it attitude, and move on. I am ready for bandannas and scarfs or what ever is cool for summer. No you will not see me walk around with nothing or bald, that I am not comfortable with, but I am OK with the cover ups. We talked to the kids about it and let them know ahead of time about it again, I am sorry it has to fall on her birthday though, hopefully she wont remember that, she wont see it, but she will remember spending the day with her family and being happy.

Hope everyone had a great 4th of July and had a lot of fun! Good night, I am off to rest before my crew gets back.

Family Friday

2009-07-03T15:01:00.000-07:00

Today was a really great Friday. It started out well, I needed a platlet transfusion which went smooth, they switched me to an oral pill Benadryl and I can stay awake now! After that I went for a routine chest xray and before I knew it was lunch time and the kids were here. They drove with Francine. Our dear friends Chris and Nina drove here with them. They did great and the trip was smooth. Seeing them was more emotional that even I expected, gosh you don't really realize how much you miss them and the every day little things about them, and hugs and kisses and I love you's are much better in person! Three w.eeks was way to long

I went to the cafeteria and we ate lunch together there and they wanted to see my "room". I guess it sounded exciting. Plus I think they knew we had a treat for them. They hung out for a few hours and played with their new toys and snuggled, it was very peaceful for me to have them here with me instead of wondering what they were doing while at home. Christian and Sofia look like they grew so much taller, and Olivia is speaking even more if possible than three weeks ago, that little girls vocabulary is amazing. She took a little while to warm up to me, it did not help when she saw me at first I had on the mask, I realized after that might have scared her. She did not take long though and she was just fine. Steven has taken them to check in the hotel and do some grocery shopping, they are staying in a room with full kitchen, and I am not sure if they will be back tonight or not, they were pretty tired, so it might be lights out early!!

Last night I started getting fevers, neutropenic fevers, just basically means my immune system is zilch, so I can pick up anything. They have taken blood cultures and started me on three different IV antibiotics now. I am so impressed with this hospital and doctors and how fast they are on things, within half hour of fever the nurse was here with new protocol hooking me up. How could any infection fight that? I went through this my last time also, I knew it was coming so it is not a surprise, but I can say it is alot less and severe and I hope goes away pretty quickly, usually as soon as my counts start to rise, but we are still not to that day after chemo where it is normal to see rises, still falls. My mouth is SO much better, I can talk and eat today, eating of course means that I feel better and so does my stomach, overall health. Drinking means
I can flush this chemo out, I still need to work on that, but the IV's help it along.

I just forgot how bad chemo and all the medicines that are making you healthy again can make you feel so bad. My hair is starting to fall out, it is coming to that time, I knew it would happen, I am told it may thin, and not all out, but if alot comes out, I may just take care of it again and shave it off like I did first time round, one thing I can't stand is hair everywhere. I am sad that this would have to happen when the kids are here, or that they have to see that again, it is the final reminder that something is going on and your are sick, the visual to the way you feel. After having such short hair for so long now, I dont want the long hair wig back, I left it at home. I have lots of bandanaa and I am comfy with wearing them. When I get home maybe I will have the wig cut into a short cute due, but mostly last time it was annoying, besides this time I know it really will grow back and it is just hair. Still hard to swallow, but it is just hair and if getting better means wearing hats and things for a bit, then thats ok with me.

Special thank you tonight - to Nina, Chris, Amber and Justin for driving with my family and coming to see us, you just dont know what it means to us to have them here and know that they were safe on the way here. It was great to see you guys too and I look forward to the weekend together. Special thanks to Nanny Francine as they have now named her for bringing the kids and taking such good care of them, it is great to have everyoine here with us now and our family back together. On a funny note they were impressed with Francine's speed and lead foot and we had some good laughs about it.

Biopsies, Ups and Downs and Art

2009-07-02T08:26:00.000-07:00

This has been a mixed up day full of roller coaster rides for sure. This am I was awoken to be taken down for my bone marrow biopsy. It went well, I was completely sedated and did not feel a thing, what a treat for a change. Once back in my room, I needed a red blood transfusion and all my medicines. I was not feeling well and my stomach stairted really hurting. Mouth sores are roaring so eating was a no go, and taking the meds an empty stomach I think set the rollercoaster off. I was in alot of pain and feeling no good, so I ended up getting a pain pill and more Benadrly during my tranfusion, and ended up sleeping deeply for over 4 hours. When I awoke, I felt like a new person. Pain was gone and I took some numbing meds for my mouth and ended up eating a can of soup and a piece of pound cake for today. Some days I am so thankful for medicines that can take you away for a bit and make you feel better.

Before I started feeling bad, we had a visit from a great lady who runs what is called Arts in Medicine here at hospital. They have open arts nights and day sessions each day, I have seen the art around and it is pretty cool. She came in and told us the story about oragami and the crane and a family who started a tradition at Moffit. I will post more on it later, I have paperwork and mine is fuzzy on whole story now. She worked with Steven to make a crane, and we each wrote a message on it and it is hanging where I can see it, to help you focus on getting through when you have rough moments. She came with soothing music and all, it was so relaxing. So after dinner tonight Steven and I wandered to open art room and they had some cool projects we did. We did painting with marbling and water colors, and made a photo for each of the children tomorrow and one for our family. We then painted a ceiling tile that will be hung in hopsital. I really enjoyed painting today and above is what we made. No Picaso, just from the heart and what I was feeling at the time. I am excited to take the kids to do projects when they are here, especially my Sofia who loves art so much. Great program to relax and keep your mind off what is happening. "Keep your faith" has been my saying since my first diagnosis, and I say it alot. My Grandfather used to say that each time he got off the phone with me and I will always remember him saying to me. Seemed fitting to put it on a tile for other patients to read in the future. Perhaps all of us can make one together next week.

We do not know when we will find out results of biopsy, most likely Monday due to holiday weekend, I will be sure to update when I know. For now, I am excited about the kids coming tomorrow for a visit, they will be driving here and get here early afternoon, and Steven and I can not wait to see them and spend some time with them.

Ouch it happened Wednesday

2009-07-01T17:59:00.000-07:00

Today I woke up this am and felt a searing pain in my mouth, the dreaded complication we tried to avoid happened, mouth sores. My mouth and tongue are so sore and hurtful, it hurts to sit and not move. Talking tonight is hurting too. Eating is fun, I am trying my best, and they are giving me medicine to help it and a "magic" mouthwash rinse to numb it. I just had an ice cream and will move to softer foods that sound good till i want to eat regular again.

I had to get platelets today again, this time they tried an oral pill instead of IV, that worked and kept me awake, but at end of bag I got the shakes and it is your body starting to process them, so I ended up having to get a small iv dose to stop them. It was an OK amount to put me to sleep, but not groggy when I woke up. Tomorrow they will double the pill amount when and if I get them.

I have these stomach pains that keep coming, so they are checking to make sure that I do not have an infection, so between eating and getting it down and then hurting when it gets there, eating does not sound appealing. We expect all of these things, tomorrow is day 12 and day 12-14 are roughest when you body is on tear down, so after the next few days hopefully my body starts producing healthy cells again and I start to feel better.

I am having my biopsy tomorrow, extra prayers please for a smooth procedure and the results that we are holding our breath for. I can feel God is going to make it all OK, I just can and I believe that with all of my heart.

Some prayers and positive health vibes for Christian and kids too. He is not feeling well today, has slight temp and sniffles, so he is resting and taking Tylenol and if not better tomorrow will go to ped. The bad part of him being sick is they are coming here on Friday and they can not see me if they have been sick, or Steven since he is with me, and of course they are beyond excited as we are to see them. I am hoping he bounces back quick and his sisters or Grandma don't get sick If they do, we wait and bring them a bit later, nothing can be done and what matters is that they are healthy first and foremost. He wanted to come today, Mr. toughie said that he is all better, what a kid :)

Knock Me Out Tuesday

2009-06-30T14:58:00.000-07:00

Tuesday started out with a nap. I was awoken and told my platelets had dropped to 7 during night, under 10 gets you a platelet transfusion. When the nurse said she was ordering, she was not kidding. I no sooner went to the bathroom and Steven told me to come out, they were here. Wow - fast! We used to wait all day long when I was at Coral Springs for them to come around. As a preventative measure to protect me from a reaction, etc. I am given two Tylenol to prevent a fever and Benadryl in my IV. So as soon as I woke up today I was knocked back out for a powerful nap. I just have not felt way today, so I slept most of day and just layed around, feeling pretty yucky. I don't think having those medicines for breakfast helped me any. I am queasy from time to time, so they give me Zofran to combat that. Other than that I am not having other side effects like mouth sores and other things they look for - hoping to hold off all the bad side effects if possible, but am realistic things pop up out of no where. We are taking every precaution possibly can though. My taste is gone and stomach hurts from time to time also.

I am hoping for a good night and a shower tonight, and to feel better. My energy is down, I know I will have rough days, they still just take my by surprise.

Olivia had a fun day at school and Christian and Sofia spent the day with friends today having a lot of fun - we are so thankful for our good friends and family taking such wonderful care of them. Thank you to Staci, Nina, Amber, Reese, Alex and Helene too for fun today - and chips :) And of course Nanny who is staying with them, and taking such good care of them, three little ones is not an easy job, and she is doing awesome with them.

If you could add some extra prayers for us in the next few days we would love it. Thursday I am having my day 14 after chemo bone marrow biopsy, when they sample my bone marrow to see if it has under 5% or 0% leukemia cells or blasts. If it is empty, that means that the re-induction chemo I received worked and I will be back into remission. I know it will happen, I am very faithful but need prayers and positive energy that the cancer is gone on the 1st try. If it is, when my counts recover and I am healthy, I will be going home. I might have to have consolidation chemo treatment until they find a donor for transplant and the process is ready, which could take a few months, but I get to go home. If Leukemia is still there, I will redo my re-induction therapy right away I believe, everyone is very positive that will not be the case so we are not talking about that. The good thing here at Moffit is I will be sedated for biopsy, so I will not feel it. I have had four so far in my lifetime and only number four did I take something to relax me, I been wide awake for them all. This time I don't want to be awake, I would rather my body do what it needs to without me knowing or feeling it. Please pray that with the holiday weekend they will still have the pathologists here on Friday to read pre-liminary report and let us know what is going on without waiting till Monday. They have alot of patients on same day doing biopsies, so we were told we should have pre-liminary results/ info on Friday.

Friday the kids are coming, I am hoping to feel well enough when they visit to enjoy my time with them.

Mix it up Monday

2009-06-29T15:31:00.000-07:00

Today has had its ups and downs, mixing it up for sure. I actually slept very well and morning comes very early around here. 5 a.m. came with early am blood draws, vitals and weight. All OK, then you can go back to sleep, to which I did. Today I just wanted to sleep later than 7:30, but that the time all goes crazy around here. First you get new tech comes in for for first vitals of day, then nurse comes in, then doctor for check up, then breakfast is delivered and they want you to eat it right away, then they are ready to clean, geesh, a person needs a break to wake up for a minute! I managed to hang out and have a slow am, feeling pretty tired today I just hung out and took my first willing nap this am. Don't forget finger prick and then the insulin shot to start out your day.

I have started to feel really winded and tired, we expect that due to the fact that my counts are dropping, platelets were 12, or 12,000 today, normal is 143-381. My red hemoglobin is 9.8, normal 11.4 - 15 and my pretty much non existent white count is at a whopping 0.41, normal being 4.0 - 10.90. And these can go lower, which is expected to happen soon. It is no wonder I was not feeling well, though still alarming and I don't like it one bit. I do not give in easily to not feeling well, it makes me angry to not feel good and like myself. This afternoon when I got up I suddenly got a ringing in my ears and felt like I needed to lay down, so after that and a second visit from the doctor, he put me on IV fluids since I was not drinking and tonight I am feeling better. Thank goodness for the option, now no pressure to drink and I can feel better.

We encountered a really rude employee today who struck a nerve in me. I don't want to waste a lot of energy on it, but I felt very upset by it. I was told by an employee taking care of me today before I got sick and put on the IV that I should have gotten up, should have been walking, life it to short to sit around. Finding myself justifying what was going on, I said we had been through this before Steven does not even go to bed till mid night or later. I heard back that she goes to sleep late, but gets up early. Why is my husband sleeping in the morning till 9 a.m.? OK -what should we be doing when stuck here for at least 30 days? I thought hospitals were to try and get some rest???

It was just plain rude. I wonder if I am just emotional and getting cranky? Steven says no. "Life is to short" - tell me about it lady, I am fighting for my life here a second time, hundreds of miles away from my home and kids, my husband gave up everything to spend every second here taking care of me, but I just cant understand why he could sleep a little in the am? It's not like we are not up many times in the night. Where should we be during the day, three walks around were not enough yesterday, you have no immune system, and are at high risk for infection, but don't sit around. It has taken all I have not to let this get the best of me today, sounds like I am still angry huh? This might not be the best place to vent, but this blog is an honest view of what goes on. I know that I need to focus my energies on being healthy and I am, and I do not have to justify a thing to anyone. But give me a break! Do you think I should have asked her how many times has she battled leukemia, or was she was away from her kids, feeling bad and about to undergo a lifesaving bone marrow transplant? Apparently she has not read by blog either, and know how proactive or positive I am. I am going to just chalk it up to ignorance and a bad day maybe on her part and not focus my healthy energy on it - now that I got it out.

So after today, we are just "sitting" and "hanging out" getting fluids, and resting -a welcome retreat in my world right now. The kids are going to be coming for a visit on Friday and that makes me smile, we can not wait to see and spend time with them, I know they are ready too.

A big thank you to my friend Amy for the fun party decorations and blue wig today - very fun girl - you are always keeping me smiling. If blue is not my color, my little girls are sure to love it too. Will post some photos soon :)

Goodnight!

It's a SLOW Sunday............

2009-06-28T11:07:00.000-07:00

It's another Sunday around here at Moffit, nothing much happening medically right now. My blood counts are dropping, no transfusions are needed, so I am taking my meds and trying to drink and eat best I could, not easy when I could not even identify what was delivered for lunch, some sort of beef stew and cheesy potatoes, yuck. Good thing they have good pound cake :) Tonight might have to be take out of some sort, both Steven and I are getting pretty tired of hospital food. The nurses and staff are really great and personal, my nurse today is from Syracuse and she has three small children, two girls and one boy too, so we have alot in common. It is nice to talk with others about normal every day family things, kids, etc. Weekends are quieter around here, but sleep is still hard to come by.

Doctors are pleased with how I am doing, asking are you having this and that, all to which I still answer no, so holding status quo is good for me - and them. I am hoping that I continue to do well with this re-induction therapy and get to go home to my family very soon.

The kids are still in full force, Sofia and Christian spent yesterday with friends The Simonet's playing and swimming - here are some photos they shared. Olivia is playing to, spending lots of time with Grandma and being cute as ever, hope to get some new photos of her soon too. We sure do miss them alot and can not wait to get them here for a visit with us next week.

Thank you Carla, Ray, Sasha and Kyla for a fun day for the kids!

Miami Seaquarium

2009-06-27T06:56:00.001-07:00

Christian and Sofia spent the day with good friends the Swab's yesterday at Miami Seaquarium, here are some fun photos to share...

Thank you Chris, Nina, Amber and Justin - they had a good time and were talking all about the killer whales last night :)

8 days, winded and HLA matching

2009-06-26T17:17:00.000-07:00

Hard to believe today is day 8 we been here. Things are still holding steady, chemo is done and now we just need to maintain my blood levels, infection and fatigue. I am getting pretty tired, I took a shower today and got winded, that is pretty freaky. But once I rest I am OK. Today was spent changing bandages on my port and mid line, showering, testing, insulin shots and the usual, the day slipped away from us, which can be a good thing, as you can get bored here. Steven and I just got back from a long walk down to first floor, actually went outside to get some fresh air, but it is thunder storming here in Tampa today, so we just stood there for a minute. When you are not hooked up to any iv's, which I am not now, I can move about outside and the hospital as I want to, but it is just to hot during the day. To keep my energy up and not get lethargic we took a long walk, with mask of course. I feel more comfortable about doing it at night when there are less people in hallways, etc. Now I am tired and ready to settle down for the night.

Lots of phone calls and emails to keep us busy, it has taken me an hour to write this far due to being on phone and blood work, which is a welcome distraction.

The nurse just came in and took blood for HLA matching - that is the bone marrow transplant matching, that means they are starting transplant match process. We have not met with transplant team yet, but should be having a consult soon.

Christian, Sofia and Olivia are doing well. Olivia is feeling all back to her smiley self, she gets on the phone with me, says hi and you at doctor? Then says your turn and gives the phone to Nanny. Christian and Sofia are keeping very busy, Olivia goes to school during the day and they are home and busy. I am managing their social schedule and it is busy! Today they spent the day with the Swab's and went to the Miami Sea Aquarium and lunch, then back to their house to play. Tomorrow they are having a playdate with Sasha and her family, then a sleepover at neighbors's tomorrow and beach day Sunday. Monday they are enrolled in Twisters gymnastics camp for the day and Tuesday each is off to a playdate for the day with a friend. Whew - they are tired, but happy :) Which makes this Mommy and Daddy happy too. Plans are underway to get them here with us next week, they are excited and so are we. We are going to celebrate Miss Sofia's 5th birthday here together.

Thank you for all the well wishes, cards, emails jokes and calls, keep em' coming!

Blood lows and sugar highs....

2009-06-25T15:15:00.000-07:00

This am as I mentioned I had to have my first red blood transfusion of my stay. I got two bags of red blood cells, irradiated, filtered, screened very well so
I did not get a reaction. I get premeditated with a shot of benadryl and two Tylenol. If you have not taken liquid benadryl, it is an experience. The moment it is pushed into the iv, the effects of relaxation and sleep comes over you instantly from your head to toes, and you go to as I call it a "benadryl nap" - right away. So I had a good nap this afternoon while my body was able to peacefully take in the blood and heal my cells. I try to imagine it doing all the good in there and helping knock out the nasty leukemia cells.

I was also told that the steroid I had to take during chemo, decadron has made my glucose or sugar levels high. Today this am they were 353 so I had an insulin shot and another a bit ago. This will go away, it is temporary from meds, but for now I am taking shots and pricking finger throughout the day. Surprisingly it was not to bad to get the shot so far, just happy it is not permanent.

Many have told us that they have a hard time reading my blog, while many like the updates, they are hard to read about. I agree, so does my husband. For me, writing has become very therapeutic and is also a way to let all those that want to know what is going on and what we are going through "see" and "hear" it from my eyes. Please don't read it if it makes you sad, but do rejoice in all the good, because rest assured even with all the bad that is happening in our life, God is working i good ways too. One day or even know as I go through this relapse, I hope that this blog with help others going though same or similar situations, and see how well I am my family and I WILL come through this storm, and mark my word - we will.

**************************************************
A big thank you to Mom and Phil for the care package, the pj's, slippers, movies and treats hit the spot - and were perfect!

Slow and easy...

2009-06-25T05:17:00.000-07:00

The "SNS-595" or Sunesis push of chemo I had on both day 1 and 4 going in my IV

Last bag of chemo therapy being taken down my Jenn a wonderful nurse 6/24/09

The chemo and saline bags still dripping

My outside door with all my many moitorings

Slow and easy is how I am hoping that today will go. Final chemo number 5 ended last night and that feels like an accomplishment - big accomplishment. Next steps are to have my blood and platlet counts fall, which they are. I was told I would be betting my first red blood transfusion today, my number is down to 8.4, over 9 you do not need one and i was out of breath yesterday so i guess it is time. They do make you feel alot better. Seeing my numbers drop is a good thing, means chemo is working, I will have a bone marrow biopsy next Thursday to look in and see what is going on, need to see now or up to 5% blasts to be in remission, but I can feel that working and know it will be clean.

So for now transfusions and just trying to keep me as infection free as possible are the goals. I am taking about 4 antibotics now, antifunglas to prevent mouth sores, things to prevent stomach troubles, they have me a medicine to stop my period before it was due to come, so overall i am on lots of preventative meds that I am hoping will make my next stretch alot easier than my first time, my first do of this aml, we did not start alot of preventatives till the illness was there, so i like being proactive.

Taste is gone, having a hard time finding things to eat. Right now it seems salty like cheese nips and chex mix worked, with some rootbeer. I just snacked on some cheese and crackers with grapes and dry cereal for breakfast, took me about 2 hours to get it down but it is in. As chemo wears off tastes willl come back, so for right now i can eat junk and not feel bad about it, that is a good thing right?

Steven is holding in there, always awesome to have him take care of me kids are holding steady and having fun, which makes us feel good. Plans are underway for their visit next week . The social worker even gave me backpacks with treats in them for them when they get here, little Sofia wanted to know her name and what was in her bag. I been sending them cards in the mail so they can get something from us, today might send a smalll treat, but overall they sound good.

Keep praying that the chemo is working and I achieve remission next week without any more chemo.

Big thank you today to Mom and Phil, I just got my first mail delivery, will wait for Steven to open it up for us. And to Donna Drucker from Advent for the beautiful card and stickers, just what I needed to hear this morning :) Thanks to Ray and Carla Simonet for making tentative researvations at local hotel with his wonderful discount for us for when we get kids here, everyone is so good to us - we are very appreciative!

Better Day

2009-06-23T18:39:00.000-07:00

Today was a better day - I been awake all day and we figured out the anti nausea drug made me so sleepy, so today I did not take it and had a day. They say I am tolerating the chemo well, chemo #4 is done and only one more to go tomorrow. The push on day 1 and 4 are done too, feeling glad to get that part out of the day. Next begins my blood counts falling, tranfusions, etc and then counts raising again, so we are on our way.

The kids are doing well, Olivia is better and getting back to herself, and Steven is being my champ like he was last time. We are missing them but all so far fairing as well as we can.

My taste buds are going, liquids taste like metal - umm, but I am trying to find things I can tolerate, my appetite is waining, but I am doing the best I can, they say I am doing well.

Heading off to relax and sleep for the night, good night.

Hoping for easier day today

2009-06-23T06:07:00.000-07:00

Yesterday no post, I had a hard day, extreme fatigue hit me in the am and
I literally slept on and off all day, i think it is a combo of the drugs I been getting, the pill I took to help me sleep the night before which I never take at home and the chemo. Needless to say it was a long day, Steven spent way to much alone.

I had an ultrasound on my arms, to be sure that the blood clots that I had during my last treatment were gone, and they were. Also I had a baseline catscan to check my head, sinuses, chest, overall I am told that was fine too.

Moffit is a teaching hospital, so I have lots of interns, fellows and doctors in and out checking, daily nurse and tech, and the main doctors. We are still trying to get to know all of them, overall everyone is wonderful and we are happy here. In their words this morning, I am doing as well as they would suspect for the meds
I am receiving. Today is delay 4 out of 5 of chemo, with a senesis push, last one of those too.

We could use some prayers for little Olivia, yesterday she got sent home from school with a fever, and went to pediatrician, she has tonsellitis, she has a high fever, no strep but is not feeling well. After ped she had to go back to ER to have her last blood test to make sure kumadin did not effect her blood. She is fine on that front, had a flu test and that was negative too, she went home with Grandma and was resting last night with a lower fever, she is home today to get better. We are just hoping that no one else comes down with it. Plans to bring them here this weekend might be out because she cant be here if sick, and Steven would not be able to come back after being near sickies.

Big thank you to Mom Russo for taking such good care of Olivia and being with her, To Amber our sitter for being with the kids and making sure they are having a lot of fun durind the day, to Scott and Carla for pitching in and taking care of the kids yesterday and to Natalie and Gene for taking them on Saturday and helping. To Nina and Chris for helping out and taking us to the aiport we left and checking in on us non stop and the kids, really a big shout out to all that are taking care of the kids and checking in on us, we could not do it without you!

Happy Father's Day

2009-06-21T19:05:00.000-07:00

Happy Fathers Day to all the fathers we know!!

Today was day two of chemo, three more days to go. Overall it was a low day, lots of meds and fluids, bandage changes and chemo blood draws. I have my chemo from 5-7 via IV.

We just been hanging out and relaxing, we got a nap in, a long walk. Uneventful day today and I am free of any wires or fluids tonight, so hoping for a good sleep.

Olivia is doing well, went for a blood check today and her levels were ok, one more check tomorrow and doc said she is good to go.

Thanks for all of the prayers and positive words.

Hope and Heartbreak

2009-06-20T19:35:00.000-07:00

Hope and heartbreak is what I am feeling tonight, for many reasons. Today was g scheduled to be day one of chemo. Due to having only one line, I had to have what is called a midline put in my arm, that happened around 3 p.m. Since I had alot of troubles in past treatment with them, I was apprehensive to get another one. We spent our day being hooked up to my pump with saline to hydrate me, taking oral meds and we did take a walk to get Steven lunch. I got sick after walk, I think due to heat with mask on, so I had to rest and take some nauseau meds to feel better.

In the past I have had awful things happen with picc or mid lines, but today was a good experience. First I had it done in my room, they turned it into a sterile environement and the worse of it was the big shot of numbing meds. When that was done it was time for chemo to begin. Today I got a "push", or big syringe pushed into my IV of a drug called SN5-595 or Sunesis. When that was over I got an in bag of another chemo called Cytarabine for 2 hours. I have lost count on number of vials of They give you anti nausea meds and keep them coming till chemo is over, so far I dont feel bad. chemo is not over and I will receive meds till tomorrow again non stop, by meds it is saline to hydrate me and flush out chemo.

One fun thing I did not mention is they monitor and record all the liquids that go in you and out, and right now I am doing a 24 hour urine collection - fun, fun!

Earlier tonight we did have some scary news. A call no parent should get when they are away from their little ones. My mother in law called to say Olivia had gotten into a pill box of my Grandmotehrs and took one cumadine pill. My mother in law took her there and turned her back for one second and saw her putting it in her mouth. She called 911 and poison control and they wanted her to go to ER to be monitored just to be safe. Since my mother in law (mil) was hysterical, they took her by ambulance. Once there they monitored her and gave her charcoal to absorb the meds, she would not take them, so they had to put a tube down her nose. She was discharged and they said she was OK, tomorrow and next day she will go back to check her blood levels, coumadin things your blood. They thought she would be ok, or they would not have let her go. Natalie and my mil assured us she was ok, and we talked to them on the coputer web cams and all she could say over and over was she went to doctor, so cute. I called our ped and she said she was OK, right things were done. It is so scary and totally heartbreaking to be away from them, the kids are doing as well as expected, but Christian does not want to talk to us or see us on camera, Sofia talks but is so sad, it tears our heart to see them in this situation. Olivia is fine and acting like her normal two year old self - thank goodness.

We are working on getting them here with us next weekend for at least next few weeks, we need to be together. The Moffit lodging coordinator will be back Monday and it will be my prority to get a place for them so we can get them here.

I am still feeling well, tomorrow is another 2 hour drip of Cytarabine and more bloodwork, etc. My hope I am feeling comes from knowing that I am getting meds to get me into remission so I can have a bone marrow transplant. I am still feeling like I will do great.

My heart is just heavy that I was not there with Olivia for something so frightening, but I know I have to be here so I can be with them for the rest of their lives. I truly wish that no other family on earth would have to experience this, this is so hard to deal with. There will be good and bad days, today was just one of the not so good.

Good things that happened today:
I got my mid line with minimal discomfort and it is working
I had a great nurse named Jennifer who was here through it all
Steven got a special cookie bouquet for Fathers Day and was suprised, I sent it to him since we wont be together tomorrow.
Olivia is fine and singing and smiling now
Day one of chemo is done and I am on my way to remission

Not so good things that happened today
Olivia and her ER experience
Over 20 blood draws and lots of meds - do I have any blood left?
No matter how much I planned and put into place for them, something really bad still happened.

From another blog I read of a fellow cancer fighter, they always sign off and say
Hugs your babies today for no reason. I agree, so do it and feel good about it :)

Hooked Up Once Again

2009-06-19T20:19:00.000-07:00

This morning I received a call telling me they would admit me today, and to be at the Clinical Research Unit at 10. We headed over from the hotel and visited the Clinical Unit. I signed by consent for treatment, had an EKG and had my port accessed for the first time. On Wednesday I went outpatient to my local hospital and had it put in. This port is under the skin, so to "access" it they have to stick you like they are sticking an iv, it goes through you skin into port. It was shocking, I was nervous for first time, but it is also new and very tender and sore from the surgery. The nurse was great and walked me through it. Good thing, you only need it accessed while in active treatment once a week to change needle, I know have basically an iv / lumen sticking out that is used to give me my iv medicines.

My normal EKG

No beds were available, so Steven and I drove around and saw a lot of Tampa, did some shopping and went to the mall for lunch. Trying to kill time while waiting to be admitted to the hospital was not easy, you would think we could do it, but we were tired and just ready to get started. They called at 3:30 and said come on over. At Admissions Office, we spent a half hour on getting in and I was sent to my room, I am in 401N. 4N I believe is all AML or Leukemia patients, it is very nice and the room is bigger than at Coral Springs. Steven is staying in the room with me while he is here and he has his own roll out bed to use.

We were immediately visited by doctor, nurse, admitting nurse, and many more, all throwing out questions, telling you how it is here, etc. It was very overwhelming, and having been through this before, I did not think it would be, but things are not the same here as a small local hospital, as I said earlier, this is BIG TIME! They are experts and do this every day. We did find out that my power port was only a single and I need a double, so now I need a picc line placed into my arm. I had four of these my last treatment, they got infected or failed me, I had blood clots one time in it, needless to say I was not happy. A miscommunication was the reason why a double vs a single was not inserted. They said it is temporary, but I need it tomorrow and was assured they would not hurt me, we shall see about that.

I am considered neutropenic immediately entering this floor, which means now that when I leave my room to walk around, etc. I have to wear a mask. It also means that I can not have fresh flowers and certain foods, I will be getting a list tomorrow of my restrictions. I was neutropenic my entire treatment last time so this is not new to me. The great thing about being here, you can leave the floor and walk around entire hospital, outside, go to cafeteria, etc. So Steven and I had to visit the cafeteria for dinner before they closed, and I wore my new accessory mask, not my favorite thing to do, but luckily it is a popular thing around here. We dined in our room and then I got hooked up to my (not) friend, the pole and fluids. I am getting continuous fluids until tomorrow when my chemo therapy starts. I told him we need a name for this darn thing that I am hooked up to this time, not so choice words come to mind when I think of it :)

I came in taking no medications, and my 8 p.m. I am already on 6, talk about fast. I am on four (4) separate antibiotics, acid reducer and an anti fungal medicine I take three times a day to prevent mouth sores. I did not have sores my first go round when taking the meds and I was proactive in getting them to give it to me again this time, I like prevention.

My first antibiotics and anti fungal medicines

My new (not) friend - the pole. With the champ bear that Christian made me

4 North - where you will find us

Thank you for all the prayers and positive words - it is nice to know so many people are thinking, praying and loving us. We feel it.

Tomorrow is day 1 of chemo, I will be getting it for 5 days, 2 hours per day. By Wednesday I will be done with chemo, from there I will be monitored closely, my blood counts will begin to fall and until they rise again on their own, I will receive blood and platelet transfusions to keep me safe. I will have no immune system, so the antibiotics are to help prevent infections and fevers that do come, On day 14 I will have a bone marrow biopsy again to see if I achieved remission with the chemo, it means there are no more Leukemia cells left. I will do this, I know it, did it 1st try last time also. If I do not kick the leukemia out, I would have to get more chemo right away and do induction once again, but I know that will not happen.

Once my numbers rise and are stable, etc. in about 30 days I will be allowed out of here. Whether I go right to transplant will depend on if a donor is found that quick, or if I get to go home or to a place near here to await a donor / transplant. That is all to be determined later on, they are two separate procedures. If a donor is not found and I am in remission, I will have maintenance chemo to keep me there. Right now, remission is our first goal. Please pray for remission on first go round and for things to go as smooth as they can. Doing so many things early on to prevent problems I am hoping will work in my favor and my body will handle all of this well.

What a guy!

2009-06-18T19:38:00.000-07:00

On Tuesday night, Steven said spur of the moment why don't we got to Build A Bear to make special bears for the kids to have while we were away. I thought it was a great idea, so we went and took their friend too.

On the way there Christian asked me if he could make two bears. I said yes, but why. He said he wanted me to make one to take with me to have and snuggle when I missed the kids. How sweet is that - he melted my heart. When we got there I picked out the bear I wanted, just by looks, not readin the tag. After we made it, I decided to read his tag, would you believe the bear is called "Champ - A Champion Fur Kids". He was designed by a little girl with cancer who donated bears to other cancer patients and funds from his purchase go to her fund.

Wow - talk about meant to be, I was speechless. What a sweet little boy.

The kids had a great time and now I have a special piece of them here with me. We each put a fabric heart inside of him, one for each of us in our family.

The kids had fun and played in the play area and got to visit Disney Store, a great memory for everyone.

2nd Bone Marrow Drive This Sunday

2009-06-18T19:32:00.000-07:00

Heidi a wonderful co-worker of my husband's has set up to have The Be The Match Registry attend her church's blood drive this weekend, so there is a second opportunity to sign up to be a bone marrow donor if you missed first.

DATE: SUNDAY, JUNE 21st
TIME: 9:00 A.M. – 12:30 P.M.
WHERE: ZION EVANGELICAL LUTHERAN CHURCH
959 S.E. 6TH AVENUE DEERFIELD BEACH, FL 33441

The blood mobile will be there this time also, so if you would like to donate blood in honor of myself and others that need it, you can do so.

Last weekend we had a great turnout and time, we had 54 elgible matches sign up - photos to come when I get settled.

Up, Up and Away We Flew

2009-06-18T18:36:00.000-07:00

This morning we flew to Tampa, it was less than an hour from here to there and getting a rental car. Out of gate B5 we flew for our very short flight.

Today was Southwest's 38th birthday too!

We navigated our way to Moffit, only getting lost one time. We arrived three hours before our appointment, so we had some time to pass. The Moffit Cancer Center is on the same campus as USF, Moffit is a teaching hospital with university students. We drove around, had lunch and then arrived at hospital early. Arriving at Moffit is nothing like being at Coral Springs where I was or a local hospital, this hospital is HUGE, this photo does not even show half of it.

We decided to check in early and walk around a bit. These last two weeks since finding out that I possibly relapsed have been so busy, filled with moving the kids, more on that later and getting all that they could need while we were away, phone calls, doctor calls, more phone calls, doctor visits, etc. that we have been going non stop. I have not been able to sleep at all, maybe a few hours a night. Last night was no exception, we were down to the wire with tickets, rental car and scrambling to get all packed up. We said goodbye to our little ones last night before bed, with many promises of seeing them soon and reassuring them that Mommy was going to get well, etc. After a few hours of sleep, we were up and out the door at 7 a.m. so needless to say we are drained and exhausted. Neither Steven nor I have had a chance or moment to process what is going on and it all came at me instantly pulling up to Moffit.

Standing outside valet area, there were over 100 people waiting for cars, many so sick and in wheelchairs, etc. Coming in and finding out where to go and getting me to the blood draw lab. We walked in and it was packed, wheelchairs everywhere with sick people, and it was just to much for me. Needless to say I sobbed myself through my first blood draw at Moffit, the nurse was really sweet and I did fine. After a good cry I was able to pull myself together before my doctor appointment. Coming here is a reality to say the least, it is a major cancer center, with so many sick people, and seeing as how I do not consider myself sick, even though my body is showing that with blood work and biopsies, I was in shock. So many struggtling and being brave in one place. Last time I did this, I did not see others like myself, or fighting other cancers, I was not prepared for today at all. I lost all my good feelings and instantly felt so sad, sad for myself, others, my family and and what we are about to go through.

Good thing I have my rock with me, we were able to hold it togehter and had to wait around for our appointment. We got a beeper and were told to explore while we waited. We walked and then ended up sitting and just being still, first time in while and it felt good.

It was time when our beeper started going off like at a restaurant, oh how at that moment I wished I was at a restaurant, even if it was with three little ones not being good :)

We met with doctors nurse, main doctor and two others, going over my history and plan. Two hours later we emerged to await admission into Moffit most likley tomorrow. We have decided that I will be participating in a clinical trial study for relapsed AML patients. I will be receiving two chemotherapy drugs, one main drip I had before, with a push of another one that is new, a new combo, which is why it is a trial. Good thing about it, my doc said it gives us options, and should these drugs not work for me, or are to much for my body, we got back to other protocal, so options are good. I will be checking into hospital once plans are in place and having what we call re-induction chemotherapy, re because I have done this before. The goal of this therapy is to get me into remission, to wipe out the leukemia cells in my body. On day 14-17 of treatment, after receiving the chemo, I will be having a bone marrow biopsy which will measure if there is any leukemia cells left or they are gone. During this time, they will start the process for a donor.

If I achieve remission, then I will go to transplant when a donor is found, and if takes awhile, I will have more chemo treatments to keep me in remission. Good thing, is after re-induction I might be able to go home for a bit until transplant or checkup that will be determined later. Once a donor has been found and all is well, I go to transplant, more on that process later, have not gotten that far with docs yet. I went into remission 1st treatment last time, so I believe I will do the same this time also.

Plans are being put into place on doctors part. We were sent to a hotel tonight, and read over all paper work from doctors and talked with my local oncologist, to finalize that we were comfortable with this plan. Now we await the call from Moffit to say they are ready for me.

In the mean time, Steven and I had dinner and are now relaxing. Moffit put us up in a hotel since I was not admitted yet. I think the past two weeks have really caughten up with us, we are exhausted. The kids had a great day and are doing as well as they can, we will be talking via web cams soon as we are settled, Sofia was excited about that.

We are at peace with being at Moffit and know that we made the right choice, from what we saw, besides just being emotionally hard for me to be here, this is a wonderful setting and I fe.el that I will receive great care. They have so much help for patients and families, they get what we are going through and are trying to ease that

Tonight after our meetings, I am feeling more confident and ready to begin. Like I told the doctors today, cancer is not an option and I need to get home to my little ones as soon as possible. Daddy was sure to show their photos to let them know who they are dealing with here.

I know this hard to read, but this blog is serving as a real testament to what I will be going through, good or bad, and it helps me alot to write about my experience - and I love that I can snap photos with my phone and post too!

Good night, signing off tonight for some much needed rest.

Good things that happened today:
We made it safely here on the airplane
Our children had a happy day being without us
They use numbing spray before they did the blood draw - I did not feel anything :)
Spending a day with my husband, we are a team and in this together
We are in a wonderful facility and feel confident on being here for treatment

Not so good things that happened today:
Reality hit and we realize that we are facing a long road ahead

There are more good things than bad on my list - that is good news!

On our way.....

2009-06-17T21:20:00.000-07:00

Steven and I are on our way to Tamp tomorrow am for our appointment at the Moffit Cancer Center, I should be admitted to begin treatment immediately or next day

Will update more when we are settled.

A plan is in place...

2009-06-12T20:40:00.000-07:00

We have made our decision and plans are made that we are going to the Moffit Cancer Center in Tampa for treatment. The children are staying here with family and friends while Steven and I go to Tampa next week to begin treatments. He will then find housing, etc and we will bring them up when that is arranged, with help in tow. For now, they will be well loved and taken care of at home, they have so many offers from friends for playdates, etc. they will be so busy they wont even notice we are gone. Well that would be my hope, even though we know they will miss us, as we will them more than they could ever know. We know that the right decision has been made and feel at peace with it. We are ready to begin our this journey once again.

Monday I will hear what day we need to be there to meet the doctor and make plans. We been in contact with Moffit getting and appointment and my oncologist and he is working to set it in place.

We can not possibly express how much the love and support we are recieving from everyone means, it is overwhelming. People around the United States are ordering kits because friends and family spread the word, people who do not even know us, that is awesome and amazing.

In bad times, there is always good, and there is alot of good things happening to us as well right now.

I plan to use this blog to update everyone on what is happening with our family, lots of medical updates, and I hope photos too. I love photography and I hope to "show" you what is happening in the hospital. Probably not alot of me, more of our environment, etc. I love reading other blogs and sites and learning from them, and in the future, this blog will help others through the process, as I have learned so much from sites I read.

I had a bone marrow biopsy which determined that my Leukemia had returned, or relapsed on Monday. This is a photo of the kit after the doctor had done the biopsy. The blood is from my hip bone and the kit also contains a small sample of my marrow, or spongy material in my bones. After that, it was packed up and sent to a lab for processing in New Jersey.

This weekend we are hoping to get everything ready for the kids, and most of all enjoy being with them and relaxing a bit. This has been going on since last Thursday and honestly this week has been harder than any day on chemo last year it seems. We were asked to make life changing decisions and plans for our children, myself, etc. in no time at all, it seemed nearly impossible to do. But we are doing it and know that along the way there will be bumps in the road and they will be ok too.

Don't forget if you want to possibly be a donor to me or someone else who needs one, go to http://www.marrow.org/ and order a kit to be mailed to you, or if you are here come out on Sunday to the drive and register there.

Bone Marrow Drive

2009-06-11T21:50:00.000-07:00

If you are local, please come out for a bone marrow drive this weekend and sign up to be a donor.

30 minutes of your time could save my life or millions of others.

Sunday, June 14th
3 - 5 p.m.
Advent Lutheran Earlychildhood School, Boca Raton

Families welcome, there is a playground for the kids and pizza and drinks provided by Big City Pizza.

I have a flyer that I can email if you can help to spread the word.

If you can't make it - go to Be The Match and order a kit, it is free until June 22nd

A new path to follow for the Russo's

2009-06-11T04:21:00.000-07:00

Evidently we are determined to follow a new path right now as a family. Not by our choice, but God's. We have found out that my Leukemia (AML) has returned. We found out on Tuesday. I need a bone marrow transplant in order to fight this disease. As you can imagine, I am completely shocked and just can not imagine that this is happening again. This time is alot more complicated. Bone Marrow Transplants (BMT's) are done at major treatment centers, which we do not have near by. We have to go to where I can be treated and it means living there for next 4-6 months. We have determined that going as a complete family and not leaving the children behind is what is best for everyone, this was so hard last time and I was local, not being with them is not an option for anyone. We have told them and asked Christian and Sofia and they agree they want to be together. Most of all, Steven and I need to have them with us for so many reasons.

We have narrowed down our choices to two centers right now, we will hopefully have the plans finalized to one of them very soon, like today or tomorrow. It will either be Yale Cancer Center in Conn. or Moffit in Tampa. The biggest factor is care for our children. This is a long and lengthy process, in which I will not be able to care for them, and Steven needs to be with both myself and the kids. We can not do this alone, we need many people, this will be single hardest thing we will ever do in our life. Steven's brother and sister in law have loving offered to have us go to Yale and they will care for the children, they live there. Steven's mom will be going with us to help and stay with the children, along with my mom and family over time. This could take 6 months or more. If we got to Tampa, we do not have that constant person to care for them, not to mention immediately finding housing, etc in a new city. I need a 24 hour support person with me. My doctors want me there next week, they have been making plans and consults every day getting this in order. Because I am not sick right now, we need to start before I become, plus my blood is sick, blood counts and platlets are falling and it can become dangerous if they get to low. Leukemia is cancer of my blood, which you can imagine dominates everything in your body. This is a next to impossible decision to make. If we had time it woudl be easier, but time is not on our side right now. My mom is recovering from major surgery and can not come right now. Going to Yale will mean the kids are taken care of in great hands immediately and it gives time for my Mom to heal to then come and stay with us, all of my family lives in Upstate New York 4 hours away, and they can come too. It gives Steven an immediate support system and he needs that just as much as I do. Tampa is a wonderful option, but we do not have as much help and support, and right now that is the most important thing. Things are not final, we are working things out with doctors, as you can imagine this is difficult. We have literally been on the phone for days and this needs to be done immediately. Both places are equally great for treatment, I am fine with either place, so is Steven and doctors.

It is hard to imagine that I am sick, I do not feel sick, I did not last time either. Yet my blood work and biopsy clearly indicates that. And this disease comes on so fast, that is the hard part to deal with, same thing first time. We have to do at this time what is most important, and that is to get me better so that I can be here for the rest of my life to be wife and mom, so right now this is our one and only priority.

Please pray for us and the decisions that we have to make. I will be posting and updating this blog with updates, photos, etc. Please subscribe to the feed to get automatic notifications when I update or bookmark. Pass it on to friends and family so they can stay updated too. It will be the best way to keep up to date on what is going on, I hope to do a better job this time of updating the blog and Steven can too. You can go back to older posts and read about our experience the first time.

I do need a donor for the transplant, please consider being a donor. You can order a kit right now for free from the Be The Match national registry, all it takes is a swab of your cheek. Go to the Be A Match registry .

The kit is free till June 22nd. We want to organize a local drive, if there is time before we go we will, it can be done after we are gone too, but anyone anywhere can order a kit and be a match. If you are not a match for me, you could be any time in your life for someone else. This is so important, please consider it. Also donate blood if you can, I did and will need so many transfusions to fight Leukemia, I had 50+ blood and platlet tranfusions the last time and will need as many or more this time, every time you donate you save a life.

If you do order a kit or donate blood, please email me or leave a comment and let me know. Photos are optional, but I would really like to know so I can say THANK YOU, and also to know how many potential other people we helped in the process, with all of the friends, family and co workers, etc we have, just imagine how many others will get help saving their life too :)

My motto is "Cancer is not an option", I know we will all come through this just fine, it will be a long and hard fight, but I know our family is up for it.

Coming around to full circle...

2008-12-19T09:00:00.000-08:00

It has been a long time since I posted, I guess that is a great indication that I am feeling well and my family is keeping me very busy. We are coming full circle to a year that I was diagnosed, and it is a very hard time. I feel like we are still in last year, and this week is like tracing those steps through last year all over again. I keep thinking one year ago today I was...

A year ago today on Friday I was at the oncologists office getting my first bone marrow biopsy and tons of bloodwork, with a very serious diagnosis looming overhead. A year ago today all my preparations for Christmas and life stopped and we sat and waited for that call, it finally came a day and a half later that told me I was sick, confirming what I already knew, but it would be official now. The sick feeling that you have when the word cancer is mentioned, in the same sentence with your name, is not something that ever goes away, you always remember that feeling, and wish that no one had to know that feeling. A year ago yesterday was the first visit with Dr. Aliff, my oncologist. It was a busy week and I was finishing with work, the kids school parties, and I innocently went to his office for my appt to check on my wacky bloodwork, thinking that I would go in there and he would say it was nothing, no worries, etc. I went by myself, not thinking twice about this appt. Boy was I wrong. December 20th is a day that will not be forgotten. It changed our world, this day is as significant for me as is diagnosis day and all the other "1st" days we had. Monday will be one year to the day of diangnosis, and I am beyond thrilled that I am here to be able to celebrate that day, and healthy enough new memories for December 22nd - happy memories.

I know as time goes on, these days will become less significant, not on our mind, but even now, months after finishing treatment, these days and all the days that I went through being sick our on my mind, I am forever changed by this experience. I don't want to forget them, but would like for them to be less painful to think about.

TEAM RUSSO helped to Light The Night!!

2008-11-03T08:09:00.000-08:00

The Light The Night 2008 walk was a big success for TEAM RUSSO! We had 17 walkers registered, plus children. Everyone was excited, and it was a really fun night. Our team earned almost $1,000 towards Leukemia and Lymphoma research. I am really proud of our team, a big THANK YOU to all those who donated and supported TEAM RUSSO and to those who walked. Next year - I hope that we will raise even more $$ raised for research and more walkers for our team.

Our team banner, we earned this for bringing in over $500 in donations. I had it printed with our team name and why we are walking

T shirts that we made for the kids - not professional - but made with love!

Balloons, Balloons, So Many Balloons!

2008-10-23T11:52:00.000-07:00

Tomorrow is the big Light The Night Walk, and today I went to my mother in law's office where she and her co-workers have been selling the paper balloons in support of TEAM RUSSO. There are so many, they did an awesome job of selling them. They are posted in her office where everyone can see them when they come in the door. There is even a friendly competition between two teachers going on, they are in a race to see who can purchase the most balloons, which translates into more $$ for LLS and helping other patients. Thank you Mom, Sedena and Marsha - you did a great job!

We have 17 people registered to walk, plus 5 children, and our team is doing great with donations, we earned a team banner for raising more than $500, which was our goal, we are officially well over our goal. The kids are excited too - they said they have never seen a balloon with a light in it.

Pictures to come this weekend.