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, May 27, 2015


We are still here. Phoebe has had some very good days. Great days in fact. She has started walking, riding her bike, and playing with Mae. The way they interact reminds me of how they played before all of this happened - before the stroke and the seizures, the fungal infections and brain lesions. It is a beautiful sight. Phoebe will say; "Mae, will you play with me?" and Mae's face will light up with a big "yes!". And then they will get right to it. I think Mae needs this as much as Phoebe and it does my heart good to see them together and happy. 

Yesterday, Phoebe had a CT scan of her lungs and thankfully things look good. The fungal lesions that we have been watching since October are smaller and overall, her lungs look better. We are making progress. 

This progress is a result of a lot of time spent at the hospital and endless dedication by staff throughout St.Jude. Phoebe is a busy girl and we are so thankful for the army of people who take care of her. Sometimes it seems that every department of the hospital plays a role in helping Phoebe get well. From oncology to transplant, the blood donor centre, the blood bank, pathology, radiology, child life, infectious disease, wound care, occupational therapy, quality of life, music therapy, psychology, nutrition, neurology, nursing, and the food services staff who have gone grocery shopping so Phoebe has her favourites when we are in patient - this hospital is a beautiful place and we are so grateful for the care Phoebe receives and the people who care for her and about her while also looking after sweet Mae and our whole family. 

We are at the hospital every day, sometimes two or three times a day if the day includes labs and doctors visits in addition to the daily two hour infusion of anti-fungal medicine. This medicine can cause a drop in potassium, so each morning we arrive to check Phoebe's potassium and then return hours later for the medicine. We try to time this around meal times and quality time so that it doesn't feel like we are always at the hospital. The days that include infusions of granulocytes are especially busy and include an overnight stay at the hospital. The granulocytes need to be given 12 hours after the antifungal medicine, so on these days, Jon brings Phoebe in to the medicine room at 4 am and I arrive at the hospital at 8:30am to donate granulocytes. The donation process takes about two and a half hours and the granulocytes are started once we are admitted to the in patient unit in the early evening. It's busy. Right now we are giving granulocytes once a week on Fridays and I'm hoping that I can continue to donate these cells to Phoebe although my hemoglobin has been slowly and steadily dropping. Phoebe is still neutropenic and she needs granulocytes to fight the infection, so in case I am unable to give, the hospital is testing a few family members to see if they are an HLA match to Phoebe, so they may be able to give too. Another reason St.Jude is great.

The plan for now is to continue with the granulocytes and the anti-fungal medicines that Phoebe is receiving and hope and pray that this progress continues and brings Phoebe to a point where curative leukemia therapy is possible. Next week brings an MRI of Phoebe's brain and a bone marrow aspirate. Phoebe is still neutropenic, but she is needing fewer transfusions and has some signs of count recovery, so we are anxious to see what is going on in her bone marrow. We need good news of healthy recovering cells and no leukemia as to effectively fight this fungal infection and heal long term, Phoebe needs her own immune system to recover. 

Phoebe has already greatly surpassed expectations and overcome so many odds - so much so that her doctors have started to refer to her as a miracle. If the shoe fits ... 

Go Phoebe go ... 

"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." Albert Einstein 

1 comment:

  1. What great, great news! Especially, Phoebe and Mae playing!!!

    Praying for things to keep going in the right direction for the Miracle Girl. Go Phoebe Go!!