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.

Thursday, November 6, 2014

Cells and Lego

We have cells. My cells. Phoebe's cells. Lots of cells. Phoebe's ANC (absolute neutrophil count) was 8900 yesterday morning. This is high and most of these cells are from the granulocyte infusion that Phoebe received on Tuesday, but some of them are also her own recovering cells. Phoebe's own cells are here. Her immune system is finally starting to recover after all of these infections and treatment. We are crawling out of the dark tunnel that we have called home for over a month.

We desperately need these cells to get Phoebe well and they have a big job to do. Phoebe's last scans showed that she had an infection in her brain and her lungs in addition to the infection that was in her belly and blood.

There are wonderful signs that Phoebe is beginning to recover. She is tolerating her tube feeds very well, her belly is no longer incredibly distended, her liver looks to be improving although very slowly, she is moving her arm that was once completely limp from the stroke, and her speech; although her voice is weak, her words are clear, and at last check (Jon stayed the night last night), Phoebe's fevers had improved. She is still needing regular platelet and blood transfusions and we have a long way to go, but progress is good.

The immune system is a beautiful thing, but as amazing as the news about count recovery is, almost more so is that yesterday, Phoebe asked to play Lego. She smiled and she asked to play Lego. Her voice is still very weak and more like a whisper and her body is tired, but yesterday she leaned on her bed and she played and that is truly the best news. Phoebe hasn't asked to do anything in over 3 weeks. She has been in her bed and in the hospital for almost 40 days. We have missed her and although she is not yet back, we believe that she is on her way.

Phoebe will go for her follow up scans tomorrow morning. She will have a CT of her pelvis, lungs, and sinuses, an MRI of her brain, a bone marrow biopsy and a lumbar puncture. All of these tests will be looking for disease and infection. To be looking for these things in so many places is terrifying. We need good news. Plain and simple, we need it.

In the meantime, we are moving forward, grateful for the small steps that Phoebe is making each day and hopeful that the worst is behind us. We are not sure what happens next, but right now we are just happy for this progress and anxious for it to continue. We will go to sleep tonight dreaming of healthy recovering and feisty fighting cells. Cells going to work on Phoebe's many infections and disease. Cells bringing light to where there was once only darkness. Cells healing our sweet girl from the inside out. We will go to sleep tonight dreaming of Phoebe and Mae; imagining them running the halls of St. Jude so that they can once again run the halls of Manor Park school.


Go Phoebe go.

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