Day 78 ~ Almost Home

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

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

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

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

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

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

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

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

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

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

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

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.