I am so sorry for not posting in such a long time. It seems like when I got back home I got back into my routine of watching my son, Bryce, 24-7. I did not want to miss a second (as you can understand). Currently I am 8 months post transplant and I am do very well so far (Thank you God!). I did have a rough couple of months after my transplant with my GVHD (graft vs host disease) rash and I ended up in the hospital twice for minor illnesses. I just recently found out that I will be needing a hip replacement because of the high dosed steroids I was on since diagnosis., but that won’t happen until I am a year post transplant. I am hoping to update everyone more often on here.
I am hoping that 2014 will be a better year for our family!!
I appreciate all of the thoughts and prayers from everyone.
April 29th, 2013- I have counts! Amazingly some of my blood counts went up last night and while they may rise and fall a bit in the next few days it hopefully means the end of the worst. I have had a rough past week between throwing up, no sleep, and generally just feeling crappy. I kept focused and got through it all with an end in sight. I unfortunately do have a very sore armpit today which has been diagnosed as a likely skin infection which traveled a bit deeper. They started me on a few antibiotics and hopefully it clears quickly as my white blood cells rise and start to help. I am still tired all the time but I know this will be the end and I will get better for good.
Bryce missed a few more days with us but i ended up testing positive for the rhinovirus anyway so we started bringing him back again. Thankfully a cold is apparently about the best thing to wind up with in my condition if you have to have anything so it changed almost nothing. Bryce is still doing amazing and is as curious as ever. He has unfortunately started biting a bit but hopefully we can work that out of him, ouch! My little man still makes me spirits soar when he is here and soon I will be with him again for good.
April 22nd, 2013- I have thrown up several times today and have been sleeping through a large part of the day. The doctors put me on constant fluids to make sure I stay hydrated and told me it was okay not to eat much at least for a bit. I have been trying to keep small things down with limited success and I just hope it will improve soon.
Bryce is still sick and I didn’t really see him at all today since I was napping so much. Tomorrow is another day and I can’t wait to put this all behind me.
April 21st, 2013- I had another relatively uneventful day today but I do continue to feel rundown. I really hate having to fight either nausea or taste when eating but I know it is only temporary. I am still reminding myself that this is the last bit and that soon I will be back home. The doctor has said that my blood counts are a bit more predictable after transplant and therefore I should start to see them rise between ten and fourteen days after transplant. Sooner rather than later would certainly be nice.
Bryce had a few video chats again with us today as he is still a bit stuffy. He got to visit our house to play for awhile and despite having brought several toys he found the springy door stop far more interesting once discovered. I hate missing his visits but if I get sick I will probably wind up in here even longer so it is worth the wait. Hopefully in the next few days my strong guy will be all better and back giggling in my arms.
April 20th, 2013- My first day out from transplant has gone okay but I have felt rundown all day. I was able to get up and walk a bit which helped things but I definitely have less energy. The weirdest part, and kind of the worst, has been that just about everything tastes like cardboard. I have been trying lots of different things and half of them make me nauseous to smell the rest taste terrible. Everyone says that my taste will return but that the time can vary so they can’t tell me when.
Bryce unfortunately has a bit of a cold and wasn’t able to come today. Thankfully we were able to video chat over the phone several times throughout the day and we did get to see him after a fashion. He seems to be dealing with it extremely well and the only issue he had was during the night. He sucks his thumb on and off at night but being unable to breath out of his nose made it wake him up several times. Missing him is yet another ache for me but I know it is best for both of us.
April 19th, 2013- My transplant is complete and I can finally start counting the days forward into the rest of my life with my family. The whole process took only an hour and ten minutes with just about as much setup time. It really is just like getting another other blood transfusion with no real noticeable immediate change. I did get two hives at the very end but some IV benadryl stopped that from being an issue. David’s work sent me an amazing birthday card that I got right before transplant that was very sweet. I also received my first and only total body irradiation today which was very scary. I am so grateful that I only had to do a single dose instead of the original nine. I was essentially strapped into a chair in an awkward position and then a loud buzzer went off the entire time, 15 minutes on each side. I was frazzled, tired, and more than a little upset by the end of it all. Thankfully that along with everything else is now behind me and I can focus on the future. Overall I felt extremely warn out today and have a constant feeling similar to having the flu. The doctor said a lot of that can come from the radiation and should fade away in the days ahead.
Bryce was here for the entire transplant and was a great focus during the whole process. He had good luck kisses for me before and after that definitely helped raise my spirits. I am so lucky to have such an amazing son and I thank God every day that he is in my life. I will be cured for good and make it back home to be with him.
The reason I fight with everything I have.
Ready to go and a-okay.
Transplant has begun!
All done and ready to be disconnected!
April 18th, 2013- My brother donated his bone marrow today and I got to visit him a few times during the process. It was crazy to see all of the tubes going around the machine in order to separate out his stem cells. He said it really wasn’t too bad but was taking a lot of tums and getting calcium via IV with his blood return. Apparently the thinning agent used in the process deactivates by using calcium so the donor can start to feel a bit poorly due to calcium deficiency. My day started out well and I had a decent morning and early afternoon. Unfortunately, a little after Bryce left I started feeling extremely run down and even after a nap I didn’t feel that well. The PA did order some blood cultures but they think all of the treatments are just starting to hit me a bit more. I am sure my lack of sleep last night didn’t help either. There was a reason to wake me up just about every hour last night between hanging new bags for my IV and taking vitals so I got very little rest. Tonight will hopefully be better and they agreed to leave me alone for a good while.
Bryce was great today and enjoyed exploring the clinic side of the floor while visiting his Uncle William and Aunt Jessica. Most of the nurses on that side have never seen him so he got the usual attention he so loves from new people. He has been learning how to high five lately and it is so cute to see him hold up his little hand for ours when prompted. I am getting more and more nervous about this while process which scares me but I know that it is all for him and our future.
Bryce hanging with Uncle William while he works to save his Mommy.
April 17th, 2013- I received my last does of chemotherapy tonight and will be getting a break from any treatments tomorrow. I did have to take two high doses of steroids which has brought back a bit of the insomnia I had when all of this started but hopefully that will pass quickly. My brother goes in for his stem cell collection tomorrow and I am praying that everything goes well for him. I am feeling pretty good again today and I hope things will keep up at least until after transplant.
Bryce had an extra long visit today but got extra fussy by the end just being held. It is crazy to think how much he hated not being held and now he still likes it but also realizes how much he can explore when we let him go. He still has plenty of smiles for me every day but definitely likes to put on a serious face whenever he is concentrating and looking around. I can’t believe I am almost to my transplant day but the sooner it comes the sooner I can start to recover and make it home.
April 16th, 2013- My day was full of ups and down but I did have my share of good moments today. I woke up feeling a bit better but still found myself fighting nausea during breakfast. Around lunch, and Bryce’s visit, I had quite a bit of good time and managed to eat a nice sized lunch from Panera. My cytarabine chemotherapy finished this evening but I was hooked up to the fk this morning so I never got a break from the IV pole, as expected. The new chemotherapy, cytoxan, has been hung and completed already tonight and has left me feeling a bit funky. I was still able to eat dinner so hopefully the c-diff was the biggest cause of my loss of appetite. This new chemotherapy drug has left my body feeling pretty warm and funny making it extremely hard to find a comfortable temperature in my room. Hopefully this won’t last long as I am only getting two quick infusions of this treatment. This drug is unfortunately scary in other ways and I will be getting several doses of mesna to protect my bladder. Apparently high doses of cytoxan can damage the bladder specifically and the mesna coats it protectively. I have also been instructed to drink and pee as much as possible. It is definitely crazy to experience first hand how extreme the ‘helpful’ drugs can be on the body.
Bryce had what felt like a quick visit today as we did our best to keep him from touching much without driving him or us crazy. I still enjoyed our time but feel so bad that I can’t watch him crawl around our house exploring. We took our usual goodbye walk but he wasn’t overly tired so after a good stroll we sent him home to fall asleep in the car.
April 15th, 2013- I have been feeling pretty lousy today and found out this evening that I have C-diff. I am not feeling up to writing much so in short I am taking a pill to help make it go away and don’t feel so great. My day was pretty blah overall but it is good to know some of it may be from the infection and is getting treated, as apposed to chemotherapy which is given to me on purpose.
Bryce came in went in far too short a time but was definitely needed today. He ate his homemade chicken baby food again with maybe a little less disgust, being rather optimistic. I keep asking everyone in hearing range if I need to worry about him getting my infection but was told as long as I wear one of their clean hospital robes and gloves it shouldn’t be a problem. We will still be extremely careful but I couldn’t keep going like I have been without seeing his beautiful smile at least once a day.