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.
Tuesday, June 4, 2013
Phoebe's latest masterpiece. It is a picture of the four of us dancing :)
We are finally finished a five day course of steroids and I can't wait to get my baby back. I don't know if I have mentioned this yet, how much I dislike steroids, but I do. I hate them. They are used often in leukemia treatment as they kill white blood cells and although they have proven effective for us in the past, they are by no means a cure for this awful disease.
These past five days have transformed Phoebe into a very different child. No longer the independent sweet and feisty girl, she is clingy, weepy, and desperate to be held all day long. She would be happy to only eat olives and demands them for breakfast, lunch, and dinner. To say no to her, as that would be logical and is maybe what some of you are thinking, would cause her to cry inconsolably. She has little control over her own behavior and once the steroids run their course she is back to herself, so instead we just ride it out and make frequent trips to Farm Boy.
When not eating olives, she uncharacteristically naps and is often sleepy. And when not napping, she is running around the house, arms flailing and hitting, shouting that Mae needs a time out. "Timeout Mae! Timeout, time-out, timeout!!!". This happens at least ten times a day, but as soon as we drop Mae off at school, Phoebe asks to pick her up again. And then she asks all day long. She is depressed. Sad. Lonely. And this is all thanks to steroids.
I don't know how we ever did long stretches of steroids. Twenty eight days of high dose steroids. How in the world did we do this? But then I can ask that question of all of this.
We just did and we do and although I have had moments over the past five days where I have wanted to lock myself in the bathroom just to get a bit of peace, I am still grateful. I often think of what one very wise mother and friend once said after saying goodbye to her precious baby. She said, be thankful for even the most difficult days because if they are over, you will miss them and long for them too.
And so we will welcome our angry, clingy, insatiably hungry, moody, olive eating, aggressive yet beautifully cuddly toddler for five or more days each month and we will keep holding her tight.
Some good news (other than the news of the end of steroids) is that we have now graduated to biweekly blood draws, or we will graduate if we can make it two weeks without any thing happening. We are due at Cheo again on the 14th and will also be getting another bone marrow aspiration sometime around then too. The bone marrow samples will once again be send off to St.Jude for testing.
Please keep Phoebe in your prayers, this is another very important test.
We are also amazed and overwhelmed (in the best way) at the support our community continues to give us. There are two fundraising events being held in Ottawa, this weekend and next. Funds raised at these events will allow us to pursue further treatment away from home, if and when that time comes, while also helping to manage medical expenses.
Thank-you also to the runners who ran in events on Ottawa's race weekend in honour of Phoebe! To Alyson who ran a personal best in the half marathon and to the amazing Manor Park kids who ran the 2k with their families and teacher - you have all warmed our hearts! Thank-you!