This morning at 7am Phoebe had more blood drawn for the clinical trial, then at 8am she received her first dose of the study drug, selinixor. She then had her blood tested every hour until noon and again at 4. Other than hopefully reducing Phoebe's leukemia burden - this is a research trial and so many things are being studied and monitored and we are more than happy to do what we can by sharing Phoebe's blood, if it will help.
This is the fifth early stage clinical trial that Phoebe has tried in less than four years, so in many ways, we have been here before. We have felt the excitement, the hope and the fear that comes with trying something new. When compared to the approved front line treatment that Phoebe received upon diagnosis, these clinical trials have been gentler and more effective overall. More than anything and most importantly though, they have given us time.
We have tried many new things and each time we do, I think of what one of Phoebe's doctors from SickKids once told us. This doctor is one of Phoebe's many heroes and a reason why she is still here with us today. When the very first clinical trial that we tried failed to be as successful as we had hoped, instead of being discouraged he told us that he has to believe that every new drug will help at least one child, or that it could be the one, as without this belief and this hope, he would never recommend or try anything new. Without research and progress these things that need to change and improve would remain the same.
Today Phoebe's little room was bustling with activity and excitement. Perhaps this drug is the "one" that will help. Perhaps trying this will open doors for other children. Perhaps trying this will open doors for Phoebe. We have to believe this to be true. The belief that anything is possible, and the reminder that it just takes one, is what keeps us going. That and Phoebe who is completely oblivious to the fact that she has a very aggressive and life threatening disease.
The sun is shining here in Memphis and every where we look another tree is bursting with colorful blossoms. It is warm and beautiful. We had a few hours between blood draws today, so we decided to head back "home" to the Target House for lunch. I'm glad we did because when we arrived we saw that the "elephant fountain" had just been turned on. The pure joy and excitement on Mae and Phoebe's faces when they saw this was just the best.
They spent the next few minutes running around and around the elephants before they decided they needed to change into "clothes like bathing suits", in case the fountain splashed them.
Phoebe then rode her bike around the elephants, ran some more, ate a lot, all while helping us through.
Go Phoebe go.