A Transplant Journey... Always learning, growing, and fighting!

     This week's clinic visit was a longer one because Sam was due for her two hour Pentamadine injection to help protect her against specific pneumonia strands. Tack on an hour on the front and back end and we were all tired getting home per usual. The good news is that Sam's platelets rebounded from last week. Her WBC though,  not as much. They increased but ever SO slightly regardless of going down on her colitis medication. Her doc wants to try to start to taper her steroid again this week regardless and hope that her WBC hold or increase next week despite this. This will be another "wait and see" test of trial and error. If Sam can tolerate the resumed taper, we could be off steroids by the first or second week in October! It has been a long taper over several months and I'm trying not to get excited too soon because if her counts drop at all or she starts to show GVHD symptoms, we will need to increase again, but we've come this far, hopefully we can make it to the steroid taper finish line!

      The other good news is they checked Sam's chimerism analysis as well this week. This is a test seeing how many of her cells are Kaeden's vs. her own. She is over 98% Kaeden:) The nurse said the lab at our hospital does not ever state above 98% to allow for a margin of error so this is as good as she can get! Sometimes over time this chimerism number can start to drop and below 90% can start to be worrisome, so we will most likely check this monthly from here on out and especially when we start to try to taper her anti-rejection drugs. We also checked her EBV which is the common virus that can turn to lymphoma in post-transplant patients that we were worried about a month or so ago. This is down a GREAT deal which is also good news (from 40,000 before to 4,300 today). Her CMV and adenovirus (two other scary post-transplant possibilities) were negative also. Her IGG (passive immunity) was low but not at a transfusion level yet. Hoping to make two more weeks before that four hour one! All great stuff!

       The NOT so great news from this week (because there is always some), is that her cyclosporine level was a LOT lower than usual. This is the VERY important but horribly tasting and scary drug for anti-GVHD and rejection that almost all post transplant patients have to take. It has a LOT of side of effects and is hard to find a good therapeutic level. Besides Sam's awesome unibrow and tremendous dark hair growth, we have thus far avoided the majority of the most bothersome side effects and maintained a therapeutic level of around 150 - 190 (supposed to be 150 - 450). Today Sam was down to 54 from 99 the previous week. Unfortunately this has always been a concern b/c cyclosporine is extremely "sticky" and adheres to plastic so her dosage going through a G-tube through her stomach was something the docs weren't sure would work. It seems the "old" PEG tube was made of a different material and I told the nurse today I think the new tube extension tubing is causing this drop because the medication is sticking more. The RN didn't have a lot of suggestions as of yet, so I will do my "Mommy Research" with other moms, call pharmaceutical companies, our homecare nursing company, and anything else I can think of to see if we can get an extension tubing of different material, a shorter length, or a syringe small enough to fit in her tube portal directly without extension. If Sam starts to show GVHD symptoms or signs of graft rejection, we will advocate quickly to just put her under and have the old type of PEG tube placed again. Although it does extend and hang from her body 24/7, she had it before for months and we can do it again if it helps us over the next 6 months hump that she needs to be on the med.

         We have spent the last eight months tirelessly attempting to become experts about this disease, treatment options, and transplant complications. I can honestly say that despite this effort, there are always questions that come up each week that cause us to search for new answers. Among the transplant community, it is common to hear one say "each person's journey is unique and different" and we have found this to be true of Sam as well. Despite the tremendous medical world's knowledge of "general" outcomes etc. so much of this is still educated "guesswork." There is no "typical course" followed by most. So this next week we'll continue to try to learn more, find possible solutions, and FIGHT this next mini-med battle.