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, September 24, 2014

The little things

We are still taking things one day at a time here in Memphis. Phoebe has continued to struggle with the side effects of the leukemia cells breaking down, or tumor lysis syndrome. When cancerous cells break down they release all kinds of toxins into the bloodstream and without treatment and close monitoring, this can be very dangerous. In Phoebe's case, it has caused stress on her kidneys, high uric acid in her blood, and most of her electrolytes are either high or low; some at a critical level. She is on continuous fluid to protect her kidneys and flush everything out and we have seen some improvement today. That this is still happening, is a good thing, and today when I saw Phoebe's doctor, she was excited. She says that this is a sign that the treatment is working. 

It is hard to see Phoebe miserable and tired, and to know that we have caused this. It is easy to forget how awful cancer treatment can be and we have pushed a lot of the terrible to the backs of our minds. It is very difficult, but we are hopeful that at the end of all of this, we will hear that Phoebe is in remission and can once again focus on healing. 

We have had glimpses of Phoebe's beautiful spunk and today was a much better day than yesterday. More important than cancer treatment, Phoebe wrote her name for the first time today - or at least the first time with all of the letters in the right order. She also sat up with Mae at the lunch counter at St.Jude and made her very own pizza. She refused to wear the chef hat, but she ate most of the pizza and had a great time making it. It is baked in a wood fired oven, the sauce is homemade, the ingredients are fresh, and it costs about 2 dollars. A lot of effort and pride go into caring for families and patients at St.Jude. It is everywhere. From the homemade chicken noodle soup in the cafeteria, to involving kids in food preparation and nutrition, to the beautiful murals that cover every wall in the hospital and the patient's artwork that is proudly displayed throughout clinics and hallways. The children are celebrated and honoured and moments are cherished. Everyone is here for treatment, but there is a great effort to make memories above and beyond cancer. It is the little things that together make St.Jude a beautiful place. To be in a hospital that cares about Phoebe as a little person who is so much more than the make up of her leukemia cells, is a beautiful thing and something that I am continually grateful for. Today we were overheard talking about Phoebe's lost monkey and within moments, an announcement was made on the hospital's overhead system about it. We never did find the monkey but it brought a huge smile to Phoebe and Mae's face to hear Miss Penny call out for detectives to help find him. 

We miss home and wish we were tucking our healthy kids into bed each night and taking them to school each day, but in the absence of that normal, St.Jude helps us to make the most of what we have. 

It is the little things. 

We are back at the hospital on Friday for blood work and a visit with Phoebe's doctor. We also restart steroids and the study drugs on Friday. We are halfway there. 

Thank-you to everyone at home who has been thinking of Phoebe and our family and helping us through this. Car washes, garage sales, bottle drives, a dinner, birthday parties, a golf tournament, a BBQ, and 50/50 draws were held or are in the works in Phoebe's honour. You have allowed us to travel this road together and to be by Phoebe's side and together as a family during this very uncertain and difficult time. We are forever grateful to be able to do this. Time is precious and it is a gift to be able to spend it together. I also don't know what Phoebe would do without her best friend Mae to hold her hand. 

From the bottom of our hearts, thank- you. 

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