What a week. Is there anyone else out there who feels like there was no end to the bad news last week?
Adam. Talia. Abigail. Onja. Of course many more whose names I don’t know. Lives lost. Hearts broken.
I feel like running away and hiding my head in the sand.
No, I can’t run away and hide my head in the sand.
Because last week, I also had to drive to the hospital and sit in the waiting room next to my husband, holding hands but not speaking, waiting for our turn to be called in. Waiting to be given the results of Elliot’s scans.
And we were lucky. Once again, we were so very, very lucky. Because Elliot is still in remission. Whew. Exhale.
But what if he hadn’t been? Would I want all my friends to run away and hide their heads in the sand? No. That would be when I would need them the most.
So let’s stand strong and stand together.
When asked by Ellen DeGeneres how she managed to stay so positive, Talia, who was at that time fighting two kinds of cancer, replied with the line from the character Dory played by Ellen in Finding Nemo. Her answer became quite famous as Talia’s motto: “Just keep swimming…” I liked this. It felt like hope, wrapped up in humour.
A few days ago, Patrick Lacey, Will’s dad, posted a blog article mentioning that he was feeling tired. No, not tired because he has once again been forced to fight alongside his son for survival and reasonable health for his 8 year old, who has had cancer for… 8 years.
He’s “tired of chasing donors and sponsors… tired of having to fight absurd battles against groups that somehow make it their mission to impede progress… and saddened that he is no longer surprised by these actions..”
I felt sad when I read this. After a week of bad news I really understood the sentiment, even coming from a person who is normally optimistic and always inspiring.
Patrick is tired, and we are all tired with him.
But let’s listen to Talia.
Just keep swimming.
September is turning gold. Just follow “A Day of Yellow and Gold” and you’ll be amazed. People are paying attention. The TRUTH 365’s facebook page has almost 26,000 followers. Even my own blog post of June 18th “Are you sick of all this cancer stuff” had over 5000 views in 2 days.
September 22nd the Jet d’eau right here in Geneva will be GOLD for childhood cancer!
Research is happening. Not at the pace we want, but it is happening. There are people dedicated to this cause, and not because they have had kids with cancer. Dr. Mosse. Dr. Sholler. Dr. Maris. Dr Grupp. Dr. Matthay. Dr. Kushner. My own Dr. Beck and the entire team here in Lausanne. I know there are many more, these are just the ones I have heard about directly from other parents. I know, Patrick, we fight for every penny, and it’s not happening quick enough to save our kids now. But there have been advances. Immunotherapy and MIBG treatment for neuroblastoma. Gleevec for AML. Limb salvage surgery for sarcomas that used to be treated by immediate amputation (have you seen this amazing video of 4 girls who had rotationplasty which allows them preserve a functioning “knee” joint, so they can still jump and run? Look at them swim! Couldn’t we wish all teenage girls would be so confident and happy about their bodies? Amazing singing voices too!)
And more research… St. Jude’s pediatric genome project. St. Baldrick’s just announced it’s summer grant program: 63 grants in 17 countries for a 22 million dollars. The new “Dream team“. In France the race “Enfants sans cancer” (Children without cancer) on September 29th is expected to raise in the hundreds of thousand euros, all of which will fund a new neuroblastoma trial which will be available for kids before the end of 2013.
It really is happening. Not fast enough. And we won’t get back the ones we’ve lost. But I do believe in a better future for the next kids diagnosed.
Just keep swimming…
The governmental practices regarding funding childhood cancer research are changing. No, not fast enough. But the Creating Hope Act is a step. In Europe, the European Commission on public health has published a document entitled “Better Medicines for Children — From Concept to Reality“, detailing improvements made and future directions. In France a petition signed by over 70,000 people has resulted in a law proposal which would increase research and improve access to individualized treatments. So it is happening, slowly but surely.The laws need to change so more research is funded by our tax dollars as well as by the pharmaceutical companies. We need a strong advocate in that area, I personally would choose Jonathan Agin. He knows what he’s talking about, he has access to the public forum through his Huffington Post articles as well as a large following in the States and internationally. Let’s back him. Jon you up for this? Good. See, Patrick, one more thing crossed off our to-do list.
Just keep swimming…
International unity within the childhood cancer community is growing. Associations are forming associations. Look at the new Coalition Against Childhood Cancer, who’s poster says “Unity is Power”.. Borders are being crossed, whether cultural, linguistic or physical. French speaking parents here in Switzerland are writing to me to ask for translations of NB Globe articles, an international neuroblastoma information website, which Rockstar Ronan‘s mom Maya tweets about in the States. Talia’s youtube channel reached across the globe. The TRUTH 365 has gone global too, with followers in Australia, Europe, and the Americas writing to each other via their facebook comments. Supporting each other. Parents are sharing experiences and advice on an international level. Momcology members care about each other’s kids even if they live in completely separate countries. We have better access to information than ever before.
It is happening. Please don’t let the tiredness, exhaustion, frustration and sadness make you quit.
We have to just keep swimming. Because after all, if we stop swimming, we’ll just sink.