Right now we are looking for a way to honour our Molly and the truly incredible legacy she left us all. One way is to get behind an event called Light the Parliament/ Legislature Gold in September.
For our sweet Molly, it was not Leukemia that ended her life, but the treatment used to cure it. What we are now learning is that the treatment used for Infant ALL is not targeted to the gene mutation that many of these babies have. I feel like they are just taking a shot in the dark. Drugs used to treat various other types of Leukemia are used in higher and more frequent doses for infant Leukemia. The treatment is so intense that many babies are seldom out of the hospital and they suffer severely. Many of these drugs were developed over 25 years ago and come with a list of possible side affects so long it makes my head spin. Brain damage, infertility, secondary cancers, lung disease, heart disease, growth deficits, hearing loss, respiratory distress… and the list goes on and on and on. During our fist transplant, we received these print out that were 10-15 pages long and we often wondered, is this the right path for our baby? Why are we putting our baby through this? And then I learned very quickly that we had no other choice. Without these second hand, antiquated, adult drugs, our baby would die. As it was she was only given a less than 10% chance of survival so we had to fight with everything available to us. It always made me so angry when people heard Molly had Leukemia and they would say “well at least she has the good cancer”. Most people hear Infant ALL, ignore the Infant and assume the 80-95% cure rates that are published by each and every children’s hospital out there. Yes inroads have been made in children’s Leukemia but sadly not at all for the hundreds of infants still battling this horrible disease.
With the treatment options available now, some babies are cured (the lucky ones). Many are not. Some babies develop devastating and life altering long term side effects from this treatment meant to cure them. And for those with infant Leukemia that relapse, the treatment options get fewer and fewer until all that is left are straws to grasp and talks of time if even that. Sometimes the end comes swiftly and painfully and you are left asking why or if we could have been better prepared. We spent the last 7 months of Molly’s life grasping at straws and frankly, it makes me sad but mostly it makes me angry. I am angry at the lack of attention paid to the children who are still fighting cancer. Angered by the band aid approach to treating paediatric cancer. Tired of the lack of change. How many years will pass before we say enough is enough? How many children need to suffer and die the way our beautiful Molly did? Right now I am scared that I may not have it in me to watch other children suffer. I am scared to read about other families who are left to pick up the pieces and live their lives without precious children like we are trying to do. Or families and children that will have to live with the devastating long term side effects of treatment.
I wonder what it would take to open the eyes of those who have the power and influence to make change. To open the eyes of drug company executives and those in government to the reality of childhood cancer. How would they feel when offered a protocol for treatment of their child that had more chances to harm than to cure. A protocol like Molly’s with a less than 10% chance of success and enough toxins and chemotherapy to kill an adult. A protocol using drugs that are 25+ years old and used to treat other cancers? Or once they had exhausted all conventional treatment, how would they feel about having to pound the pavement, to raise money for research in the hopes that they could beat the clock. How would you feel? I feel overwhelmed and most days I feel like hitting a punching bag. What is being done now is simply not good enough. My baby’s memory deserves better. The other beautiful babies and children that we have met on this journey that are still fighting, deserve so much better. I hope that my beautiful daughter Molly’s story can motivate someone to start the wheels of change moving in the right direction.
Now you may ask, how can you help? If you feel strongly like I do, that we need a cure, and that the facts surrounding paediatric cancer, the leading cause of death by disease for children in Canada, are shameful, you can share the stories of children like our Molly. You can raise awareness. If one thousand more people become aware by reading this post, then we have done well but if ten thousand people become aware then we will have done even better. You can donate to an organization that raises money specifically for childhood cancer research. But ask how much actually goes to childhood cancer research. Unfortunately most range between 1-3% total! By donating to BCCHF in Molly’s name, the foundation allows us to specify where the funds go and we will make sure they to go to childhood cancer research. In October, the world is showered in pink (in fact the world is more and more often showered in pink). I also support breast cancer research and the need for breast cancer awareness, but I wish that the world could also be showered in gold. Gold, in case you are not aware, is the official colour of childhood cancer. September, is childhood cancer awareness month, so I hope this September will be showered in gold. I hope that Gold becomes as recognizable and synonymous to childhood cancer as pink is to breast cancer. Or as recognizable as a moustache in Movember.
You can help light the world gold by signing this petition.
http://www.change.org/en-CA/petitions/light-the-parliament-hill-gold-we-will-light-the-hill-gold-on-sept-21st-for-childhood-cancer
It is to light Parliament Hill Gold on Sept. 21st to raise awareness for childhood cancer, to honour those children fighting, the survivors, and the children (like our Molly) who are no longer with us. It has been circulating for over four months now and has just over 1300 signatures. Just 1300 signatures. This speaks volumes. Please, if you can do nothing else, take the time to sign and then get a friend to do the same.
We will be starting our own petition to light the Legislature Gold (which we will post here) and are planning a sister event on the same day here in Victoria. We hope you can attend with us if you are able.
