1st Chimerism Test Result!

Sweetpea all dressed up to share the good news! 

Her first Chimerism (How much of her is donor cells) test came back today and her Tcells are 100% donor!! This is the best possible news for this blood test. This means the donor cells have taken over here. If you remember my prior explanations, Bella did not have an immune system because her Tcells and Bcells did not work. This test shows the donor cells have taken over 100%! Her docs have reminded us how rare Bella's case is, she is super rare. Out of the 4 SCID patients or any other child who has had a BMT, (they all are different)... Bella case is the most unique. So based on what they do know they would be happy if her test results were above 30%... so 100% is the BEST possible outcome. Thank you Jesus! This is amazing.

The next test (a month from now) they will look at her Tcells again as well as her B cells. The % that is donor is important, but their function is just as important. The bcells and Tcells have to talk to each other and function together. Bella's Tcells may be all donor, her bcells may not be, and that's ok as long as they both function together. Her Bcells could come back as all donor as well, or a mix of her and donor... They just have to function with the Tcells. We will find that info out with the next Chimerism blood test. 

I have said it is amazing that Bella has come through the chemo and the transplant the way she has. Minus the sepsis attacks prior to BMT, she never got the severe Mucocotis sores in her mouth and she never got the severe bum breakdown that the chemo meds can cause. However, her doc did say Bella is the sickest SCID patient he's seen go through this process. (Out of only 20 SCID related cases he has personally handled)  He believes her hard times post BMT are most likely do to her fluid imbalance, that has proven tricky to handle. This can be a common issue with babies regardless, but with Bella's particular case...she's the worst he's seen. But! She has pulled through like a champ and they are so happy with how she is doing now, they are very pleased.

Tea Party

Timeframes and Isolation 

From the beginning they have told us expect to be in hospital for 6-9 months post BMT. So at the earliest we could be home with Bella by September 2015. This timeline is based a lot on the timing it takes for Bella to come off of all the meds and they also must monitor her for specific amounts of time after each med has been discontinued. Keep in mind she is a SCID patient not a cancer patient. They have done many BMTs with cancer patients... Four, for SCID patients. This is about protecting her new immune system, and not exposing her to any risks. The BMT for her is meant to only be done and needed once! We do not want her going through this process again because we risked and compromised her system too early. 

We must be on strict isolation post BMT for roughly 3 months, until Day 100. This means she's not allowed outside her room, at all until the beginning of July at the earliest. That's why when we accidentally got outside last week, it was a big no no. This 100 day room isolation is because they need to make sure Bella's cell function is adequate before it is safe for her to even risk going out of her hospital room. So hopefully by July we will see they begin to allow her "outside passes." They can only do her cell function tests once per month. To see adequate cell function takes at least 3 blood tests, so 3 months. 

Bella wearing her BMT necklace. 

This is her necklace that has the bone that matches to her donor's necklace. We haven't gotten word of anything about our donor yet. I may ask again tomorrow, but still haven't heard if she  received her card and gift yet. It didn't get sent back to us either, so looks like One Match approved our letter and gift for the donor. 

We stopped in the Swift Current hospital when I was home for the weekend and dropped this card off to the nurses on the maternity ward. I wrote a note on the back for them aswell. Since our short stay in October in the ICU there, I haven't had a chance to update them. Living in hospital for over a year, I see how much the nurses that have cared for Bella, need updates like this. I have also sent emails to Bella's nurses in Saskatoon, RUH. 

When I dropped off the card I was happy to hear the one nurse say she was my nurse when I went into labour. The Swift Current team does not air lift emergency newborn cases often, so I can understand how much of a heartbreaking day that was for them aswell. Bella's story, blog and updates are serving a great purpose. I'm happy and humbled when I hear how much people check the blog and appreciate the updates.