Life can change in an instant. Please remember this and don't take it for granted. Don't complain about the weather and the traffic, don't complain about growing older. Don't sweat the small stuff. Hug your kids and your friends and your family. Let them know that they are loved. Be thankful.
We are not giving up. In fact, when I arrived at CHEO this morning, although we were still waiting for results and I was in complete denial that this was actually happening, Phoebe's doctor had already been talking and emailing with her doctors at SickKids and St.Jude and they are once again putting their heads together and looking into options and trials. Trying to find something to help. Trying to find us some hope. The amount of disease in Phoebe's bone marrow is relatively low, it is 14%, and today's tests showed no leukemia in her spinal fluid, so that is one tiny piece of good news. Phoebe also has no symptoms and her blood work is normal, so we have some time. It is not like it has been with previous relapses where we have been racing against time, we are still racing and we need to do something soon, whatever that may be, but we have more time.
Our fearless leader, Phoebe, is as feisty as ever and it is so hard to believe that she is anything but healthy. She is as joyful and full of life as always and we love her so much. We will continue to follow her lead and we will never stop believing that she will be cured. We have been knocked down, there is no question about that, and we are exhausted and weary, but as long as there are options, we will keep trying.
Despite the hope that we continue to cling to, what I feel the most right now is frustration. I am frustrated and angry at the world and I have so many thoughts running through my head. Before Phoebe was diagnosed, the thought that one of my children would have cancer was completely foreign to me. It never crossed my mind. Not once. It would never happen to us because I am healthy and I am careful and I don't do any of those "things" that cause cancer. We eat organic, I am a vegetarian, we exercise, avoid chemicals, we don't eat fast food, I read labels obsessively and avoid anything I can't pronounce, we mostly cook from scratch, and I am careful to the point of being paranoid, yet my baby was born with cancer. I feel like I need to explain and defend myself sometimes as we are inundated with information on the internet that tells us that cancer is caused by things that we have done or eaten, that it is a result of a nutritional deficiency, or because we are not happy and positive. I believe that what we eat and how we live is so important, but it is not so simple, especially with children. I look at my Phoebe, who is happier to eat lentil soup and kale salad than candy, Phoebe who happily drinks down her curcumin juice, and I feel like screaming. We did what we were supposed to do, and this still happened to us.
So, here we are almost 4 years later and we are no further ahead. Yes, there are some trials and options but they are few and none are in Canada. Canada has one single hospital running phase 1 clinical trials, Canada directs only 3% of federal research funding to children's cancer, and somehow, this is thought to be okay. It is not okay. These kids who are participating in trials, sacrificing their bodies, their lives, all while clinging to hope for a cure, no matter how small, and their families and friends and doctors who are shaving their heads and running marathons to raise money; they are who is forwarding research. For Canadian children, the options are very few at home and our government will not cover the cost of "experimental treatment" for the few more options in the US, despite how promising they may be, so kids are dying. Canada is behind, and the research is not moving fast enough for Phoebe. This reality is terrifying.
Next week, despite all that is going on, Jon is determined to go to Toronto to shave his head as part of the Great Big C17 Head Shave. Also shaving his head at this event is Phoebe's Dr.Whitlock, who is also the chief of oncology at SickKids and chair of C17 and one of the doctors that has been working hard to find us some hope - he is a very busy man, yet he is raising money for childhood cancer research and shaving his head. Many of the other people joining him are also pediatric oncologists. Phoebe's doctor at CHEO, who is also chief of oncology and extremely busy, runs a 100km relay each year to raise money for childhood cancer research. What does it say, when the people responsible for treating children with cancer and researching better treatments and cures are also the people raising money to support the very research they need to move forward? I think it is very telling of the lack of support and the lack of money given to children's cancer research by our government and the need to do more. It also speaks to the dedication of these wonderful doctors and people. We need to fill the gap, so that our doctors can focus on saving children, rather than advocating for more funding. We need to do more because it is the right thing to do.
We will know more tomorrow and hopefully have a plan. In the meantime, we will continue to hold Phoebe tight, to tell her that she is loved and to surround her with hope. Her big sister Mae knows something is wrong, she is holding her Phoebe and asking many questions, but we haven't told either of them yet. We are taking things one day at a time. Thank-you for reading this and caring for our sweet Phoebe Rose - we need prayers and postive thoughts now more than ever.