Today, Phoebe has "survived" 5 years. It was 5 years ago that she was diagnosed with infant leukemia. 5 years ago that we were thrust into this world of childhood cancer - a world I honestly never knew existed until I was part of it. All that has happened since that day five years ago, it is almost unbelievable. It still feels like a nightmare that we just need to wake up from.
Phoebe has truly never fit into this statistic. Her initial diagnosis carried a somber 10-15% survival rate. With transplant it increased to 30%. Now it is zero. There are no survivors of refractory infant leukemia. A very harsh reality and so very far from 80% it hurts. But yes, Phoebe has survived 5 years from her diagnosis, so she is now counted among the 80%. We are so grateful - many of our friends whose children had cancer were not so fortunate, but this survival is not what it seems. We are led to believe that childhood cancer is a success story - we hear that 80% survive and this really is good, but the next time you hear this statistic, I want you to think of Phoebe. There is still so much that needs to be done.
This is what "surviving" 5 years of childhood cancer looks like for Phoebe and we are not alone in this.
Never mind that Phoebe still has active disease and no cure or effective treatments available, never mind that there truly have never been any effective treatments, what she has had to endure to survive these 5 years is simply incomprehensible. It is just not okay.
This past year alone she has suffered strokes, seizures, and infections - all a result of treatment. She has spent countless days in the hospital. She has suffered greatly. We have tried just about everything we can try to rid her body of leukemia, but nothing is working and it's getting harder. I can't even write about all that has happened this year or these past five years without sobbing. It is all just too much.
Today, Phoebe is a very sick little girl. She is tired and spends most of the day sleeping or lying on the couch. I can't remember the last time she ran or played. She is not eating and she hardly talks to us. She has had low grade fevers almost every day for over a week and is requiring oxygen. It is absolutely heartbreaking and watching Phoebe fight and struggle each day is so hard. We are not sure what is going on and there are many possibilities. We worry all the time. Are we making the right decisions? What is best for Phoebe? Is it too much? And each day we are faced with decisions and choices that no parent should ever even have to think about.
We were reminded this week, when we met with Phoebe's transplant doctor to have another painful discussion about the lack of options, that we have always made the right decisions because we have made them out of love for Phoebe and with an intense longing to help her survive. We were reminded that statistically, Phoebe shouldn't be here. That she is a miracle. That to have survived these 5 years - especially considering all that has happened, is medically unexplainable and miraculous. This we know. Phoebe is amazing and strong. This we know, but it's not enough. It will never be enough until there is a cure.
No one should have to fight so hard to survive five years and five years of struggle and heartache does not equal cure.
We hope this latest treatment plan is working. We hope to be able to do a bone marrow aspiration tomorrow. We hope for good news. We hope to figure out why Phoebe is so sick right now. We hope. We hope. We hope.
Thank-you all for continuing to read and follow Phoebe's journey. Despite the struggles and heartache, there is always joy and hope and always something to be thankful for. We have been blessed with an army of support and for this we are so grateful. We have had five beautiful years of life with our family complete and we will never give up. There has always been light even in the most overwhelming darkness.
Here is light and joy personified ...