Day +94: Home and 98%

We had our last appointment at the outpatient clinic last Tuesday the 20th, where they gave us the green light to return back to Kelowna. Let’s just say we ran outta BCCH as soon as they gave us the go and didn’t look back, and maybe even had selective hearing as we power walked down the hallway. 😛 Team BMT continue to be happy with her counts and her sunny disposition. We have a scheduled appointment for Nadia down at the coast at the end of July. In the meantime we will go for blood work here in Kelowna next week to see where she is at and asses after that if they want us to go weekly, bi-weekly or monthly for bloods. Fingers crossed Nadia’s counts will continue to go up where they need to.

We came home to a lovely welcome home poster plastered to the garage door made by Nadia’s daycare. It was such a nice welcome home surprise. We are loving being back at home. Nadia was like a kid in a candy store when we walked into the house. She was running around, looking at things, touching things – she was thrilled. She is able to reach things on the counter that she wasn’t able to reach before. According to our very accurate home made growth chart on the wall, she has grown 2 inches since January. I knew she had grown, but that much? I was shocked. We are feeling very blessed that she has grown and put on weight since January. We had no idea how Nadia would do physically during her BMT. We expected her to be tired, lethargic and loose all of her hair. She was none of these things, in fact she was the opposite and we are so happy and grateful as we know this is not the case for every BMT patient out there. Nadia thus far has been the exception to the rule this far in her little quest.

Being at home has been great so far. We are all enjoying being together, in our house and running around the backyard. Nadia is still not allowed to go into crowds or busy public places, if we do go out to someplace public she wears her mask. But to be truthful we haven’t really been out much, I am sure you can empathize that you would rather keep your immune compromised kid in the confines of your own little bubble than expose them to the dirty public. Plus we all know bringing a 2.5 yr old out to public places doesn’t always end well, so it is just easier to avoid it. In some ways I feel it is better that she is so young and not knowing she is missing out on hanging out with her friends and having play dates. On the other hand she is missing out on interacting with kids at daycare and putting her in things like music and swimming lessons. I just keep telling myself she has the rest of her life to be dragged to music lessons kicking a screaming. HA! Having said that we do go to the park as much as we can, and we are limited the time of day we can go. The chemo she had before transplant and some of the drugs she is on makes her more sensitive to sunlight, not to mention the disease itself, and because of the BMT she is also sensitive. And when the park starts to get busy or I see some kid with a runny nose, we are outta there!

Last week we got an email from her doctor letting us know that her 2nd chimerism test came back as 98% donor. Remember the first one said it was 91%. What does this mean? It means that only 2% of Nadia’s old bone marrow is left in there and the rest is all the new stuff doing dance dance revolution. Not sure what that 2% is doing, but what I picture is it just watching the dance dance revolution going on and wondering what the H is going on and trying to find the nearest emergency exit. I do want to point out to whomever is reading this trying to do research on BMTs, Nadia’s Chimerism test was done through periphery blood draw i.e. regular blood sample. In cancer cases they usually do another bone marrow biopsy for this test to make sure the cancer hasn’t come back or stayed around. When Nadia was first diagnosed back in September they used a bone marrow biopsy to help diagnose her and find out what the H was going on. I can’t remember if they will need to do another one on Nadia at the 6 month mark and yearly afterwards. Something we will ask next time.

We met with Nadia’s Kelowna Pediatrician this just to touch base post transplant and bring him up to speed with her. He was pretty happy to see how she was doing. He is such a great doctor. He was also pleased to tell us Nadia is now 25% for height (and that was on the fat kids chart, not the premie chart). Take that stupid genetic disease and bone marrow failure. HA!

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Bathing without here CVC line. We ask Nadia where here noodles are and she shrugs (??)