On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.

Wednesday, February 6, 2013

Good news day

Another beautiful day in Memphis and we have good news to share.

The bone marrow results are in and morphologically, they are negative. The cytogenetics testing that looks at the make up of the cells, is normal. We are still waiting for chimerism and other MRD (minimal residual disease) results, but this is good.

When I heard this news, I wasn't sure if it was good however, because It does mean that right now, Phoebe does not qualify for the trial, but it also means that she has a very low level of disease. We haven't spoken with Phoebe's transplant physician yet, but the plan right now seems to be to recheck the bone marrow in a few weeks in consideration for the trial.

Our plan right now also includes radiation. Ten days of radiation to Phoebe's pelvis. For these ten days and to ensure that Phoebe remains still so that the treatment is effective, she will be sedated. The hope is that this can be done with relatively minor side effects, other than the major side effect of infertility. The meeting with the radiation oncologist was difficult. It is hard to imagine and come to terms with radiation; that after all of the treatment that Phoebe has received, all of this innovative therapy, that we are now resorting to radiation. It seems sometimes like we are taking steps backwards but radiation has shown to be an effective, although extreme form of treatment. And it will hopefully effectively target cells in the pelvis that the other treatment has missed. It is fitting, I guess, considering that we are dealing with a monster.

For now, we will take things as they come. We don't really have a plan, but that is okay. We have pieces of a plan and we are where we need to be to get Phoebe better. We are celebrating this news because it is worthy of celebration, but are also aware of just how evil this disease is, and the need for further treatment to ensure that we do kick it to the curb, for the very last time.

No comments:

Post a Comment