It’s T-0. For nine days, we were “conditioned”. That simply means that Maya was given sufficient amount of chemo to ready her for the Transplant. Conditioning included:
- Total Lymphnode Irradition. (TLI) The raditiona therapy targetted the thymus and the spleen area. These two areas are where the T-cells hang out. T-cells also cause GVHD. Hence, compromising these area means that the chances of developing an acute GVHD is lessened.
- Various chemo to compromise Maya’s bone marrow.
Our protocol is such that the bone marrow is not completely wiped out. Effectively it means Maya did not receive brutal doses of chemo. Matter of fact, Maya tolerated the chemo rather well. That is, Maya was only completely knocked out for 1 day and felt under the weather for a couple more days. Over all, it has not been devastating as we expected it to be. Both Indira and I feel that all the prayers and chants that have been pouring in from all over the world has had a very positive effect on Maya. For that we are grateful. Thank you all.
Of course, tough days are still ahead of us. But everyone here is pleasantly surprised with how well Maya is doing.
Transplant is taking place now. Yesterday at T-0 was the first transfusion. The photos from T-0 are here. Watching my stem cells being transfused into my daughter was one of the most significant events in my life. It was right up there with watching my children being born. One could not possibly put to words the emotions that was running through my head. On one hand, I was very happy that I was actively participating in Maya’s well being. All parents can understand that. On the other hand, the cells that were dripping into her could kill her. The fear was also brimming over as well. Soon enough, my cells will go to war with Maya’s body. GVHD is a fearful thing. Fear and happiness collided in me that could not be contained. I had a good cry.
Thankfully, absolutely nothing happened. Now, all we can do is wait. We wait for that magic word, engraftment. Until then, we can practice some stoicism and be there for our daughter. And in so many ways, our daughter is your daughter, who through technology and advances in medicine, we were able to share our story.
There are two stories here I think. There is the story of a girl and her family who were put in a tremendously difficult place in life. The pain and suffering endured by this little girl is a reminder that we have yet so far to go until no child endures what Maya has endured. It’s a very sad story all too easy to become overwhelmed. And we are overwhelmed.
But the dominant story I think is about a girl who can still smile and laugh even in the face of these difficulties. It speaks to me about the miracle that is us. It shows me that no matter how difficult life can be, it’s possible to laugh, love and live the best we can. I am often ashamed of myself in comparison to my daughter. It is also the story about a community that has taken this very special girl into their heart. It’s also about you who decided to support this girl and her family. The goodness in human heart has never been made so clear.
Today, is the end of the world as we know it. It’s Maya’s second birthday. One of the compassionate nurse here at St. Jude has made Maya a birthday card. It is a new begining. Maya and I now share the same blood which is made with love from me, and supported by the greater community that is you. How can we ever thank you for your support?
Tougher days are ahead of us. That is certain. The ending of this story is not yet written. The ending may be days from now, months from now, or many many years from now. But we have taken our first step today. And I can’t imagine taking our first steps without all of you.
The Kim Family.