Last week Sansa had a bone marrow sample taken from her spine because it had been 6 months since her bone marrow transplant in January. It was a routine test to check and make sure everything was still looking good. Last Friday Sansa's doctor called me to let us know that there was leukemia present in her bone marrow. 7% to be exact. All I could think was "f*ck." I didn't say much or ask many questions on the phone because I was trying not to cry. As soon as I got off the phone the flood of tears came. Fear, frustration, anger, and sadness came rushing to the surface. We are beyond devastated because we did not expect anything like this to happen. Sansa has been her crazy happy normal self (just like you see in these photos), so we were very unprepared for this news. I mean, you can never really be prepared for things like this, but we just felt completely blindsided since everything with Sansa has been super great after her bone marrow transplant.
Her relapse still does not seem real because Sansa is doing so well. Life feels like it is moving in slow motion but moving so quickly at the same time. One of the biggest lessons I learned last year during Sansa's treatment was that the world keeps moving even though ours stopped. It is a crazy and weird sensation to deal with and we are forced in this situation once again. It was about this time last year that we found out Sansa relapsed from her initial chemo treatments. We were getting her ready for school yet again. It breaks my heart that Sansa has yet to experience a normal kid life. I just want her to go to school and make friends and have fun outside of the hospital. We have been gracious for many programs connected with Hopkins that have given us as much normalcy as possible but its just not the same. My heart aches for this girl because she deserves so much more than hospital stays and visits since she has been a baby.
There is no official answer as to what her treatment plan will be at this time, but we are leaning toward CAR-T cell therapy. Its this new leukemia treatment that has had great success so far. It is pretty complicated to explain so if you want to know more about it, you can google and find many articles and videos on the therapy since it has been in the news recently as verbally approved by the FDA.
I am currently trying to soak up all the little moments with this beautiful cheerful babe while she is feeling good this summer. We will go for ice cream, pool dates, to the beach, and try to squeeze in as much fun before this fighter starts her next round of treatments.
I am so very thankful that we got to take family photos this summer. I love these from Valentina Massa so much. They were taken on a muggy evening about a month ago. We all had so much fun exploring Baltimore together. <3
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