[Chris H]

(continued from previous)

January 18th Kira went for her third bone marrow biopsy as well as a skin test for Mosaic Fanconi Anemia. On January 24th, 2012 our whole family went in to Clinic to hear the results of this biopsy. Dr. Cuvelier said he was finally able to get a satisfactory sample and it indicated that Kira had less than 10% cellularity in her bone marrow – diagnosis Severe Aplastic Anemia.

Dr. Cuvelier explained that Kira had presented as a bit of a mystery at first and he figured that it was because she hadn’t fully progressed into the condition. If the bone marrow biopsy done on Jan 18th had been the first they would have reached a diagnosis immediately. HOWEVER… as they had taken the skin sample as well on the 18th and were currently culturing it for the Mosaic Fanconi test the team had agreed that if Kira remained stable at the present levels they should wait for the results of that skin test to come back. The treatment for Aplastic Anemia is not the same as for Mosaic Fanconi’s and although the team feels it is SAA they do not want to take a chance with her well being and are waiting for a definitive negative on the Mosaic test before they proceed.

Terry and I feel this is the best course as her levels remain stable and she is well (rapidly knocking on wood as I type) so this gives us all time to prepare and adjust to the idea of what happens next.

Kira’s levels now:
WBC 3.73
RBC 2.65
HGB 91
MCV 104.2
PLT 30
Neut 0.69

We have a rough estimate of late April for Kira’s transplant with her brother as the donor. Ethan is already stressing about the time away from his sister and I as the last hospital adventure is still fresh in his mind. He is also worried about donating but I think Dr. Cuvelier helped him to see that it’s not as big a ‘scary’ thing as his mind had grown it into. The nurses we met that will be Kira’s team are also very helpful in making Ethan feel a willing partner in this process too. We are very fortunate to have a group of awesome people looking after our family!

As an aside note before I end Terry and I wonder if there is more to Kira’s condition than just “unknown cause”. Kira’s follow up appointment with her appendix surgeon included a pathology report that indicated that Kira’s appendix showed not only new inflammation but also chronic inflammation. Kira has been dealing with stomach issues since she was very young. As early as Kindergarten she would end up staying home with tummy aches, sometimes getting sick to her stomach sometimes not. As the years went by and they never seemed to get any worse or better and the doctor had no answers (ultrasound in 2009? proved nothing) we assumed it was nerves. Looking back now we wonder if she has had very tiny flares from her appendix all her life. We also wonder if this may have been the trigger that sent her immune system into overdrive thereby attacking her own bone marrow… We may never know but I am just putting it out there as a possibility/point of discussion.

So… after babbling on forever all that seems left to say is “Here we go into the rabbit hole…” (Alice in Wonderland)