I have erased this first sentence a dozen times, because I can't seem to find just the right thing to say. We had our discussion with the doctors today regarding moving forward with Alice...however, the discussion went entirely different than we had imagined. We anticipated them telling us that we should begin to prepare for transplant. Although the contrary happened.
Certain developments have come to fruition. Dr. Cowan at UCSF has provided us with some very important information; through some testing they have discovered that Alice likely now has HLH (Hemophagocytic Lymphohistiocytosis) in conjunction with her already existing SCID. This isn't good news for her. It does provide more answers to why she is doing so poorly keeping her blood lines up. If in fact she has this, the doctors feel it was brought on by the processes of the chemo drugs, and many other factors dealing with transplant. It would be considered Secondary HLH. There will be further testing to confirm this.
Maybe I shouldn't post about this until we have more information. There is much for us to learn still. I won't take the time to explain what HLH is and what it means for Alice, at this point. I will do this in another post if and when it's certain that she has it. The interesting part of all this, it that ironically the way HLH is treated and cured is already what is in plan for Alice.
It is a very good thing we did not proceed into transplant earlier. The doctors will first manage/control the HLH with steroids before she has a second transplant, this is pertinent.
Dr. Boyer said, "Alice's situation continues to become more complex"; we said, "Is that possible?" How can it be more complex? While driving home, Tyler and I discussed this new information, we feel that it is one step closer to where we need to go. It's bad news, but it's news and now there are more pieces to the puzzle.
The truth is...we are so blessed that Alice keeps pushing along. Knowing all this information and what her body is really doing...it's a huge blessing that she is as well as she is, and happy all the while.
Okay, I have a feeling that this post makes little sense. My mind is scattered and tired, so I will post later, and hopefully it will be more clear.
Today Alice received platelets.
Platelets 3 (after the infusion her platelets rose to 53)