This week we learned that the transplant trial that we have been waiting to reopen since February is now permanently closed. It was under review by the FDA and after 6 months, they decided to close it completely. Phoebe is not ready for a transplant right now, but this was our only option. It was our chance. Phoebe can't receive a standard transplant because it wouldn't work and it would be too hard on her, but this transplant promised to be more gentle, innovative, and because Phoebe now has both AML and ALL leukemia, her only curative option. Phoebe's transplant doctor is writing a new trial but it could take up to a year ... that is a long time for a little person like Phoebe to wait. We believe she will get there, but as more and more obstacles are put in front of us, we are beginning to feel alone in this.
We are determined to put one foot in front of the other and move forward. Our plan was to start the gemtuzumab on Monday, but that has now been moved to Tuesday because Phoebe has developed a few new spots on her skin. We thought one was a mosquito bite, but nothing is so simple when your child has cancer and no immune system, and now there are more and they look too much like the fungal infection we need to never return. Phoebe received granulocytes on Friday and because the gemtuzumab can target these cells too, it has been moved to Tuesday to maximize the potential of the granulocytes.
Most days I can't decide what scares me more - fungus or leukemia. To properly treat and cure the fungal infection and heal long term, Phoebe needs an immune system and right now, the leukemia has crowded out all of her healthy cells, making her immune system non-existant. Chemotherapy - the only option we have at treating the leukemia right now, damages the immune system even further, killing leukemia along with any healthy cells. We can't aggressively treat leukemia when there are infections. It is a terrifying place to be in and I wish there were another way.
We are hopeful that gemtuzomab will help to rid Phoebe's body of the AML leukemia, giving her healthy donor cells a chance to recover, but we don't have much of a plan beyond this. We have some ideas and always hope, but no real plan.
Right now, the next step is to do a skin biopsy of these new spots on Tuesday. We need good news and Phoebe deserves a break. No one should have to fight so hard but this is life for a child with cancer.
We hear often of how Phoebe is so strong and brave, and she is, but she is also just five years old. She has no option or choice but to be brave and every day she confronts things that would cause most adults to completely break down. She deserves better than this and I often dream of a life without tubes and central lines - a life with school buses, soccer practice, swimming lessons, and packed lunches. A simple life with our family complete and without cancer.
Phoebe, and every child with cancer, deserves more than 3% of federal research funding. They deserve more than toxic outdated chemotherapies, more than pennies from a billion dollar health care budget.
This September, please remember that kids get cancer too. Despite statistics that boast 80% survival rates, this is not a problem solved. It is not even close. Phoebe will soon be included in this statistic, and although she has technically survived five years, she is nowhere near cured.
If you are in Ottawa, please join us on Parliament Hill September 13th and help us raise childhood cancer awareness. Together we can work to change this story by sending a message to the Canadian government that we need to do better. And what better place to do this than where change happens.
Mae, who is so strong and brave just like Phoebe, will often burst into tears and tell us she "dreams of Ottawa". She is desperate to visit home and I was hoping to be able to take her to the event, but because Cancer runs our lives, I just don't know if we can. If we don't make it home, this will be the second time we are canceling a trip home with Mae. It is the second year in a row that we are not able to attend the event because we are in the US pursuing treatment for Phoebe. We have now been away from home for over a year and Phoebe has spent more time in US hospitals than she has at home.
We are not alone in this and we need to do better.
Please speak up and stand up for children fighting cancer this September - and all year. Donate blood. Register to be a bone marrow donor. Donate to a childhood cancer specific charity. Tell the stories of children whose lives are forever changed by a cancer diagnosis. Tell the stories of their siblings. Wear gold. Ask your federal candidate how they will help and invite them to do these things too.