Doing much better now

Sorry it's been so long since I have updated. For a few days last week things were a little difficult. Last Monday my doctor started to decrease my steroid and I think that really affected me. At night after I took my meds I started to get really confused. This went on for another day and finally by Wednesday night I told mom we needed to go to the hospital. They ran a bunch of tests and keep me overnight for observation and I got to come home on Friday. While in the hospital they adjusted my medication and that seems to be helping. My GVHD is so much better. I think we are finally over that hurdle. Other than that I am doing more. I am getting out of the house and going out to eat with my family. It feels great to get out of the house. I feel like I am getting better everyday.

Day +25

Today has been the first time that my mind hasn't been in a fog. I am still fighting the GVHD on my body. My rash is still on my stomach and chest. After going to the clinic everyday for treatment, my doctor decided to try a new drug and give it a few days to work. I am lucky to have today off and I will see my regular doctor on Thursday to re-evaluate my treatment. My doctor is not overly concerned about my GVHD. He says some is good because it shows that my body is engrafting the new stem cells. I have never done anything slow and my body is trying to take over too quickly. With all this medication they are trying to slow down my body to give me some extra time to engraft. All my blood counts are coming back like they should and I haven't needed a blood or platlet transfusion for quite a while. As soon as we get this GVHD under control life will start to get a little easier. I apologise if I don't call or respond to e-mails as quickly as I should. I still have my good and bad days. I do read them all and appreciate every one I get. Thanks for continuing to keep me in your prayers. I can honestly say that this is the hardest part of the entire process and I can't wait to get to the other side.

Home Sweet Home

I can't believe I'm at home! It was 2 weeks ago today that I was recieving my donors cells and look at me now. I am sleeping in my own bed, able to make my own food and sit comfortably in my recliner. By looking at me a week ago you wouldn't think this was possible. I was at my lowest and not sure when I would get to feeling better, but Neupogen is a miracle drug. Since I have been home I feel so much better. I get to see the sun shining in the windows and I know I am more active because I have to move around to get what I need. Being home is the best thing for me. I go back tomorrow for a clinic visit to check my blood counts and make sure everything looks fine. Then I will probably be back in Dallas at least 3 times a week for check-ups. They want to keep a close eye on me so if I develop more GVHD they can treat it quickly. Just wanted to let everyone know that I'm doing great!

This bird is leaving the nest

I have been holding on to this information for a few days, because I wasn't even sure if it was true. Looks like today is the day I get to come home. Yesterday they switched my to all oral pills and I have not run a fever for the past 24 hours. My counts have skyrocked since the Neuopegen. Everyone feels confident and comfortable that I can do this at home. I have been wanting to get out of here, but this is my safety bubble that nothing can go worng. If I need something I have someone willing to give it to be quickly so I can feel better. I know eventually I will have to leave the bubble, but I am leaving 6 days earlier than I thought I would be. So if you want to get a hold of me or come and see me here is my information. I continue to need your prayers because recovering at home is going to be just as hard as being in the hospital.

512-748-5729 cell
817-249-1770 home
1009 Mistletoe Road, Benbrook 76126

I felt your prayers

Thank you for all your e-mails and blog posts. I read every single one of them, but I didn't have the strength to respond. For about 3 days I was feeling at my lowest. The only thing I could do was to get up and go to the bathroom and sit up to take a sip of water. My body was exhausted. I try to keep a positive attitude, but I was fighting to see the light at the end of the tunel. I officially have GVHD (Graft vs Host Disease). It happens when my body sees the donors cells as foreign and attacks them. I started getting a rash and it spread over my face, chest, stomach and back. On top of all this I have not bee able to eat for the past 2 days. All I am able to keep down is water. For the first time today I was able to eat some peanut butter crackers. You would think with as little as I am eating I would be losing weight, but they are pushing so many fluids thru me that it is having the opposite effect. I started Neupogen (white cell booster) 3 days ago and it is working miracles. My white count is 0.6 and I have 174 ANC (fighter cells). I believe because my counts are coming back that is related to me feeling better. I feel like I have taken a turn for the better finally. Thank you for continuing to support me and lift me up with your prayers. I truly do appreciate all that you do.

Love,
Samantha

Finally starting to feel better

Sorry it has taken me so long to update the blog. I was doing well up until Day +4 and then I went downhill fast. The doctors told me that days 3-10 would be the worse and I was hoping that I would feel better for a few more days, but I was wrong. On Day +4 I woke up feeling ok, but as the day progressed I started feeling terrible. By that evening I was runing a fever and they were starting me on heavy antibiotics. I was tired, running a fever that would not go away and my heart was racing everytime time I got up to move. Day +5 wasn't any better. I have to make myself get up and walk so I can be active and hopefully heal faster. It wasn't until today (Day +6) that I needed a blood and platelet transfusion. Since I got that I feel much better. I have more energy and am not dizzy when I take a walk. In 2 more days I will be getting a white cell booster so my white cells can start producing faster. The less days my white count is at zero the less chance I have of getting another infection. By Day 10-14 my white count will start to reproduce and we will be able to see how my donors cells are working in my body. So far I have tolerated this regimine very well. If I can get away with feeling bad for only a few days then I am very lucky. I hope to only have to be here for another 2 weeks. If I do get out of here then I will be going home on Valentine's Day. After I leave the hospital I will be coming back and forth to Dallas at least twice a week to monitor my labs and all my my medications. I will have to be very careful being around people for a while because it is going to take my immune sysyem a while to rebuild.