Uncertain News

So...a couple weeks ago was Scarlet's 1 year post-transplant appts. and as I mentioned before they did a bone marrow aspiration to look at chimerisms, chromosomes, and ADA enzyme function. The chromosomes test takes a little over a week and so the results weren't back by the time we had our exit conference with Dr. Sanders. I received a phone call from Rhonda, the attending PA at the SCCA last Friday and she told me that the results of the chromosome test were very strange and that they would like to draw again, which we will do on Wednesday. I should have known then that it wasn't good, because like I've said before it's never good news if one of the PA's or DR's call. I was worried but didn't know what to think because I really didn't understand anything she was telling me. I had a chance to talk to her again on Monday and ask her to explain it to me more thoroughly because I didn't have a clue as to what she was talking about. She pulled out the sheets with the results and showed me the results from her first draw that was taken before transplant and the one that was taken recently. The first one she explained to me was normal, it had the karyotype XX (sex chromosome) and 19 chromosomes...which maybe for babies is normal, she told me it was. The new result showed that her karyotype is still XX which was surprising since her donor was male they expected it to be XY. But that wasn't the real concern. What was concerning is that her chromosomes have translocated which means they have been altered at some point and now are considered abnormal. Which leads me to the worst of it all...it appears that Scarlet may have myelodysplastic syndrome which is caused by abnormal chromosomes. It can affect the red blood cells, absolute neutraphil counts, and/or platelets usually causing signficant drops in whatever area it affects. This would explain her fluctuating ANC.
Myelodysplasia is also known as the precursor to acute myelogenous leukemia (AML) which is the worst form of leukemia. From what I've gathered myelodysplasia can be treated with therapy and in Scarlet's case she would continue to get GCSF (hormone shot to boost ANC). It can however, progress to AML and if it did it would be even more difficult to treat. The prognosis appears to be very grimm if she were to indeed have MDS and then progress into AML. I'm still not 100% on anything with this and only started researching last night through massive hysterical tears, so I could be wrong.
I found an article from the Oncology Journal that talked about transplant patients who got MDS(myelodysplastic syndrome) post transplant. Out of 400 patients 7% got MDS and all of them ended up dying either from MDS or from infection during a second transplant.
It is said that MDS can occur from radiotherapy, chemo associated medicines, and even prednisone. Scarlet had total body radiation and has been on prednisone since December. The radiation was considered a very small dose as well as her prednisone...the Immunologist we saw today said that in her 10 years working with transplant patients she has never seen anything like this especially in patients her age and also with her type of SCID (severe combined immunodeficiency).
I was pretty emotional yesterday and I felt like all was lost, again. This is the 5th time that I've felt this hopelessness since Scarlet has been born. Completely devastated, wanting to give up and die, all of that. But...this is the 5th time that Heavenly Father has given me the comfort and strength I've needed to endure. He's shown me that He has been there for us all along and after a long good cry and much deep contemplation I am ready once more to put everything in His hands. I can't explain to you the peace I felt, as if He was there with me, letting me know that everything would be ok. I prayed that He would help me to feel peace and even though I felt like all was lost and I wanted to wallow in my misery, I was blessed with that incredible feeling where I couldn't, even though I wanted to.
I talked awhile with Charlie and he is second best to God. He is amazing, he always knows exactly what to say and how to say it. I am still afraid of what might happen to Scarlet and what this means for her future. She has already endured so much in her short life, I hate to think about what else she may have to go through if they find that it is MDS.
I know that all will be well and that Scarlet is amazlingly strong and will give her all to overcome this and anything else she may be faced with.
It's fast Sunday this weekend and I'm asking my fellow LDS friends and family(and anyone else who would) to include Scarlet in their fasts once again.
We will know the results of the new marrow draw in a little over a week and all the Dr's will confer with another and let us know as soon as they can about what is going on inside and what we can expect.
By the way, the Immunologist today told me that Scarlet is actually still her original blood type and that she has not engrafted the donor's red blood cells which explains her XX karyotype.
She did talk about a few other things concerning her results but I need to end this and get back to playing with Scarlet.
We had a fun day at the Woodland Park Zoo today, sorry no pictures, I forgot my camera at home. She is having a good time here at Grandma and Grandpa Williams house.

Thanks for your prayers for Scarlet, please continue to pray for her.