We are on the front lines and while it can be encouraging and hopeful to be where we are, it is also extremely heartbreaking. Each day we are reminded in some way of our precarious situation and fear starts to set in. Phoebe, our fearless leader, usually brings us back, but it is hard.
Phoebe is the second child to be enrolled on this study. The first child, we learned today, recently lost his battle with infant leukemia. He was 9 years old. The study investigators have searched and searched for a reason that might connect the drug to his death and found nothing. Our doctor also told us that up until this heartbreaking moment, the drug was working. All of the adults who have received the drug have reported no side effects. When you get to this place where we are, the place of relapse and last options, the place where your child has received years and years of toxic and harmful treatments that have done little more than temporarily calm the storm, it becomes painfully clear that the chances that something could go wrong are great. I usually push this to the back of my mind. Not my child. Not Phoebe. I try as best as I can to believe that we are going to change this story, but at the end of the day, this is our reality. Infant Leukemia is a monster. We have lost too many friends to this disease to believe anything but this. My thoughts are with this little boy and his family. To be 9 years old and still fighting this monster - I can't even imagine but at the same time, I can. May be rest in Peace.
God bless this family.
We heard this news just before the study drug was set to be started. Our doctor gave us some time to process it and ask questions. We decided to choose hope and continue with the plan. Focusing on the adults in complete remission. Focusing on the reasons this will work rather than why it might not. Remembering how we felt when we woke up this morning, full of hope and excitement at the fact that for once Phoebe would receive a targeted therapy. We chose hope with this family and the many other families we have met on this journey firmly in our thoughts and hearts. There are many little ones whose memory we carry with us each and every day and in many ways, the thought of these brave kids is what keeps us going.
We need a cure.
As the study drug was connected there was a tremendous feeling of hope in our little room. We were joined by Phoebe's doctor who is the investigator for this study in both kids and adults and we also met the researcher whose tireless work went in to developing this drug. When this doctor entered the room, she was beaming. She talked about her research and how the drug works - she explained it very simply, telling us that the drug is similar to the make up of human cells; that the production of cells is like a chapter book, but this drug is programmed to tell the cells to "skip a chapter" - skip the chapter, where in Phoebe's case, the chromosomes mix up and cause leukemia. Essentially, the drug is designed to stop the process that causes the MLL gene to function and because this is what started Phoebe's leukemia, there is great hope that by stopping this process, we will stop the leukemia.
Great hope, but also great fear.
To watch such a simple procedure - one IV tubing being connected to Phoebe's central line and a few pushes of a button, but to know the great work that went in to getting to this moment, was really something. To watch the researcher watch in awe as Phoebe was hooked up to this medicine, and to know that in that moment she saw her hard work come to fruition, was an amazing thing. I am glad we had this moment and I am relieved that this group of researchers has been able to get this drug to trial, that they have chosen this leukemia to focus on, and I have great hope. I pray that this is the breakthrough that Phoebe and so many others need.
Shortly after Phoebe was hooked up to the study drug, she remembered that there was a toy ride on car in the playroom and promptly decided that she was going to have a "little race" around the clinic with Mae. After trying to keep up with her while carrying her IV bag and trying not to trip on the IV tubing, I convinced Phoebe that she would be faster if she wore her back pack - she agreed, strapped it to her back and off she went. Like the wind.
When she tired of carrying her back pack, her big sister offered to do it for her. "Where would you like to go, Phoebe? I've got your medicine". And off they went.
We are back at the clinic tomorrow and then, if all is well, we will have the weekend off of hospital life.
We've got some more exploring to do.
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