We know one thing for certain and that is that Phoebe is not finished fighting. He told us today that he is "fairly certain" that if we do nothing, even if the MRD is negative, that this Leukemia that we have been plagued with for over two years, will come back. Our talks with this doctor have changed from hopeful long term planning and talk of the future, from what Phoebe will be when she grows up, from how she does not need to be monitored as closely as I would like, to talk of time. To talk of giving us a year without disease and hoping for more. Hoping that when/if this disease rears it's ugly head again, that we will be ahead of it. Smarter.
I will explain.
Phoebe's leukemia is a monster, sadly we know this to be true. We have lost too many friends to this disease to believe anything but this. It has proven to be resistant to some of the strongest chemotherapies available. It reappeared after the highest doses of these drugs meant to cure. It came back after transplant. It came back this time in a way that most doctors have never seen and so most expect it to come back again. I refuse to believe this to be true, but accept that we need to do all we can to give Phoebe more than simply a year without disease. We need to and we will give Phoebe a lifetime.
The plan revolves around many unknowns, but today we spoke about options. Because I like to look at the bright side of things, I will say this. Right now many wonderfully new, innovative, less toxic, and promising treatments are being trialled for pediatric leukemia. Progress is being made and the word "cure" has been spoken about these new therapies. We are hopeful that Phoebe will qualify and be able to have one of these treatments. There are treatments using modified T-cells, harnessing the power of the immune system. Cellular therapy that is novel and different from anything Phoebe has had before. Best case scenario would be for Phoebe to receive this type of treatment but many things need to fall perfectly in place for this to happen. There currently are no treatments like this offered at St.Jude, or any that we qualify for with our very low or possibly zero evidence of disease. They are offered elsewhere in the US - Texas, New York, Philadelphia. Another bright side is the wonderful, dedicated and determined team of doctors that Phoebe has on her side who are putting their heads together once again.
In lieu of any available cellular therapy, Phoebe's doctor is suggesting a year of maintenance chemotherapy and close monitoring. This is very low dose chemo to prevent disease from coming back, or raging back if it does reappear. Essentially waiting and seeing at it's finest. Waiting for potential disease to show and being ready when it does. This option includes a possible third transplant. Or perhaps nothing. Perhaps Phoebe will once again march to the beat of her own drummer and prove that anything is possible. Even the very good things.
Phoebe has already exceeded every expectation and surprised her doctors at each turn and I believe that she will continue to do this.
Cancer aside, Phoebe is doing so very well. She is like the most perfect spring day. She is growing, thriving, living, learning and to watch her in action is to watch magic happen. She embraces her life as we all should; with her eyes and heart wide open, ready and willing to take on whatever the day brings.
She is here. I can hug her as much as she will let me, and for that and the very fact that we have options and are still "fighting", I am grateful.
"We are a family, and so nobody is going to go away. Unless they just go to the grocery store". Mae Doull-Hoffman
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