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It's been a long time - long update

Posted Jan 18 2010 8:21am
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.
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