In the patients who have responded to the treatment, the researchers have seen maturation of the leukemia cells, it seems that the cells mature and then stop producing, but in Phoebe's case, they unfortunately see much of the same immature MLL+ leukemia cells. We had a lot of hope resting in this treatment, we fought hard to be able to receive it, and I wouldn't change a thing. It is promising, we gave it a chance, and it wasn't meant to be. It is still a drug that is being developed and researched with the goal of improving survival rates for this awful leukemia and I am grateful it exists. It isn't the answer for us, but I hope it can still be an answer. Despite this, what remains an incredibly unfortunate and sad reality for us at almost every turn in this journey is that the research is not moving fast enough for Phoebe. It is keeping us afloat, and we will take this and are so grateful to be able to tuck Phoebe into bed each night, but we need a cure.
We are moving on and moving forward and doing what we can to put one foot in front of the other. We are sad that this was not what we had hoped for and we are tired, but we still have options and we still have hope. I often think of the words of one wise and brave mom when we come to points like this. She said, "if we still had options, we would still be fighting". And so, on we will travel.
We are leaving for St.Jude on Thursday. The hospital of hope. There is a trial there that has seen success in MLL + leukemia patients with a doctor whose focus is MLL + leukemia and we can start right away. These drugs and this trial are not available in Canada and will not be available anytime soon, or possibly ever. There is another promising immunotherapy trial that has been suggested which is also not available in Canada ... and I can assure you that we are not the only Canadian family looking for options like these. We are so thankful for St.Jude and to have been able to receive treatment in Denver, but we need these treatments in Canada.
Despite all of this excitement, after a blood transfusion today (thank-you blood donors), Phoebe seems as good as new. Her blood work without the transfusions is not the greatest, but we hope that things remain under control until we can start something new. Mae and Phoebe are both happy to be going back to St.Jude and in many ways it is like home - a home we hoped we would never need but are so grateful it is there.
Tomorrow we are at the hospital to disconnect the last of the study drug and to say good bye to the backpack that has been like an extra limb for the past 28 days, and then we will hurry to make plans to get out of town.