This week has been difficult; waiting for results, the stress and anxiety that comes with that and yesterday we heard news that one of Phoebe's little friends passed away. Brave Molly Campbell. Our family was truly blessed to have met her and her family in Memphis and I will never forget them. They are a beautiful family and Molly was a courageous and amazing little girl who inspired so many. My heart is heavy. This road that we are on is one that no family should have to travel, and what the Campbell family has endured, no family or child should have to endure. It is all too much.
Since our journey began, many of the friends we have met and loved with the same diagnosis as Phoebe, are no longer here. Piper, Matthew, Wesson, Ella, Molly. Beautiful, energetic, brave, captivating children. It is hard not to worry. Hard not to wonder if our time will come. And we do worry about that. Every day. We worry every time Phoebe sleeps in late, eats too much to show a bloated belly, or too little, every bruise and bump, every change. The mother of one of these beautiful babies once said to me when I met her for the first time at St.Jude, she said; "I wonder and worry all the time ... when is my baby going to die". It is all too much and we need to do better.
For many of these babies, it was not Leukemia that ended their lives, but the treatment used to cure. You see, the treatment used for Infant ALL is not targeted to the genetic mutation that many of these babies have. It is, in my opinion, 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 complications so long it makes me shudder to think about it. Brain damage, infertility, secondary cancers, lung disease, heart disease, growth deficits, hearing loss ... and the list goes on and on and on. Reading the list when we began this journey, I wondered - why are we doing this? 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.
And so, with these treatment options, some babies are cured. 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 relapses, the treatment options are few and ineffective and often, all that is left are straws to grasp and talks of time. We have been grasping at straws for two years and frankly, I am sick of it. Sick of the lack of attention paid to the children who are fighting cancer. Frustrated by the band aid approach to treating pediatric cancer. Tired of the lack of change. How many years should pass before something changes? How many children need to suffer? I am tired of watching my baby and other children suffer. Of reading about families who are left to pick up the pieces and live their lives without precious children. Or families and children living with devastating long term side effects. I am so tired of worrying, but in many ways I am thankful for the worry because it means that Phoebe is still here.
I wonder sometimes, 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 Phoebe's with a 10% chance of success and enough toxins and chemotherapy to kill an adult. A protocol using drugs that are 25 or more 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, exhausted, weary, hopeful, worried, and most days I feel like screaming. Screaming that this is not good enough. My baby deserves better. The babies and children that we have met on this journey, deserve better.
How can you help? If you feel strongly like I do, that we need a cure, and that the facts surrounding pediatric cancer, the leading cause of death by disease for children in Canada, are shameful, you can share the stories of children who have been touched by cancer. You can raise awareness. If one more person becomes aware by reading this blog, then I have done well. You can donate to an organization that raises money specifically for childhood cancer research. In October, the world is showered in pink (in fact the world is often showered in pink). I support breast cancer research and the need for breast cancer awareness, but sometimes I wish that the world could also be showered in gold. Gold, in case you are not aware, is the colour of childhood cancer. September, is childhood cancer awareness month. 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. I hope. I hope. I hope.
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 who are no longer with us. It has been circulating for over two months now and has just over 300 signatures. Just 300 signatures. This speaks volumes. Please take the time to sign.
Today, we are one of the lucky ones. Today, Phoebe is here and she is thriving. Truly and miraculously thriving. Today and every day, I am thankful. Today, Phoebe's bone marrow results have come back negative for Leukemia. The MLL gene that plagues us is undetectable by minimal residual disease. That's right, it is negative. Today we have given cancer another swift kick to the curb.
If you would like to send Molly's family a message of support or perhaps donate aeroplan miles or funds to help them return home, please visit www.mollycampbell.ca