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.

Yesterday we went to the funeral home to see Molly for the last time. We took her favourite pretty pink tutu and her favourite brown boots as well as a few things the kids wanted her to have with her (pictures, cards and cross necklaces they made for her) The experience of seeing her like that (she looked like a cold wax figurine of someone who looked a little like Molly) was very difficult. Sadly the swelling she had over the last week really took its tole on her.

The sad fact is that Molly had beaten the Leukemia again and was 100% in remission sinse December with no trace of Cancer in her body. This all only compounds our intense anguish. How her lungs could have become so very sick without anyone noticing, still escapes us. It sounds like it will be a few weeks before we get any answers about why this happened and that has been especially tough for both Rebekah and I.

We are extremely thankful for all of the incredible support from our friends and neighbours here in Memphis. You could not have asked for a better surrogate community. Also we would like to thank the ICU team at St. Jude, for loving and caring for our beautiful daughter over the last month. Most of them never got to see Molly in all her glory and beauty but they treated her like the princess she truly was. We are preparing to bring Molly back home to Victoria and we will be forever grateful to our community back there for everything they have done to support us through this journey.

I read this in the funeral home and felt like Molly was telling it to me. She said in her sweet little voice, Daddy, I’m Free

Don’t grieve for me, for now I’m free
I’m following the path God laid for me.
I took his hand when I heard him call
I turned my back and left it all.
I could not stay another day
to laugh, to love, to work or play.
Tasks undone must stay that way
I found that peace at close of day.
If my parting has left a void
then fill it with remembered joy.
A friendship shared, a laugh, a kiss,
ah, yes, these things I too will miss.
Be not burdened with times of sorrow
I wish you the sunshine of tomorrow.
My life’s been full, I’ve savored much,
good friends, good times,
a loved one’s touch.
Perhaps my time seemed all to brief,
don’t lengthen it now with undue grief.
Lift up your hearts and share with me
God wanted me now.
He set me free.

Heaven has gained a beautiful Angel but we will miss her every second of every day for the rest of our lives.

Your support has meant so much, and I know the Campbell family will appreciate additional prayers and love in the coming weeks. No family should have to go through this.

-Emma (family friend)

This morning Molly suffered from a bronchial spasm where her lungs contracted so tight air could not get in or out, she was once again manually bagged and given treatments to help relax the muscles. No one is sure what caused the episode, it could have been that she was to awake and panicked while breathing against the vent, it also could have been an allergic reaction to a drug as her face also swelled up to an uncomfortable noticeable state. Molly had a fever for the first time in days and that along with her blood work this morning also showed a big jump that would indicate infection so it could have been caused by another infectious process.

The idea that she may have another infection or that they removed something that was helping treat her current lung infection is a huge worry. Some of the drugs that were just removed are now back in place for extra coverage. Until today Molly’s blood work has been looking good with nearly everything in normal range so this feels like another obstacle to overcome. We feel like whenever we make progress something else arises, but the fact that Molly is on the conventional vent while just 12 days ago they could not even get her on it and we were blessed to be able to get her on the oscillator at that point, really is huge progress all be it slow and extremely stressful.

The other kids have been enjoying a YMCA camp that keeps them busy during the day and Sara is at the hospital with Molly usually colouring pictures in her room and keeping the volunteers busy when she can find them. The kids are very patient and understanding. They are very concern for Molly and are egaer for her to wake up. We continue to pray for Molly’s miracle, for her lungs to heal, for her to overcome this infection and for continued 100% donor 2 chimerisms. Thank you for your support for spreading the word and for your prayers. Go molly go!

Even the doctors have not been able to go home as she keeps them on there toes 24 hours a day, and every 48 it is a new icu doctor. Her latest xray shows improvment from a week ago so we are hopeful that after a week of every antibiotic, fungal, viral meds that this virus might be near the end of its course and her lungs will begin to recover and build up there reserve. Molly has not been stable enough to even turn at this point and pressure sores are a concern.Yesterday we got news that her chimerism from Monday is now 99-100% donor2 ( Beks cells) so her doctors are removing her ammu suppression. We have been her before and we have seen how quickly these results can change so even the smallest change is a huge concern. It has been hard to even concentrate on her transplant while we are so focus on getting her to a more stable state, but now we will be praying and anxiously waiting for the results of next Mondays chimerism. Molly is strong each day she fights through something new and we are blessed that she is here with us moving forward. Please continue to pray for our little girl, she is still waiting for her miracle.