First, things, first.
How are those letters coming along?! Do you remember my challenge to send a thank you note to a pediatric oncology doctor or nurse? You can remind yourself here. I've heard reports of people printing pictures and posting them in their offices. Good job! Thank you.
Look at Esther and our friend, Thomas! Don't they look wonderful? Thomas is a friend from our homeschool program who was in treatment at the beginning of Esther's journey. I love this picture.
You'd never know looking at them that one is missing a kidney and the other is missing an adrenal gland. You'd never know they share a similar scar on the top of their left chest. They look so healthy! And for the most part, at this stage in their lives, they are. I am thankful for this.
One of the most disheartening things about childhood cancer is the nominal amount of money driven toward research. Much of cancer research is funded by pharmaceutical companies as they have an interest in the profit from the research. Research for pediatric cancer is not profitable, so children are left with what the government is willing to spend, about 1% (or less) of the giving other big cancer fighting organizations receive, and with private donations.
Given the state of our educational system, it's easy to expect the government isn't shelling out tons of money. In fact, they only give 4% of it's cancer research budget to all 12 varieties of childhood cancer. While more children are surviving cancer today than ever before, kids are still being treated with drugs that have not been improved for over 20 years. Supportive care and follow up have been big boosts in the cure rates. For example, after Esther's rounds of chemo she would get a shot to increase her white blood count. This was not always available and because it took so long for an immune system to recover, kids would often die from a secondary infection.
The FDA has only approved 2...TWO...new drugs for children in over 20 years. Oncologists have been able to work with doses and timing, but what is available to use for children is either a highly toxic, 20 year old formula or something that is being researched. According to St. Baldricks, over 60% of childhood cancer survivors will face chronic health problems, and 1 out of 4 will have severe or life threatening illness because of the treatment they recieve.
National Health Institutes has even more sobering numbers:
Research has clearly demonstrated that late effects contribute to a high burden of morbidity among adults treated for cancer during childhood:[2,9-11]The Children's Oncology Group has many details about some of the specific problems here. Both Esther and Thomas will likely experience at least one of these late side effects due to the severity of their treatments. Esther will probably experience several. Exposing my "soft underbelly" as some friends like to explain it, I'll casually state I'll take her. But, I am having a hard time actually accepting that there will be lifelong follow up. Just in the next few weeks Esther has four appointments to address some treatment related issues. Those will likely lead to more. I just want it to be a big thing that happened and shaped us and is in the past, not something that continues...that's another post for another day. Back to research....
- 60% to more than 90% develop one or more chronic health conditions.
- 20% to 80% experience severe or life-threatening complications during adulthood.
Research is happening and those researchers are being excellent stewards of the money given. They are having some successes, but largely in part of the generosity of private donors. Furthermore, research isn't available for every child. Only a certain number of children are allowed on a study. If they only have 5 spots, and you're number 6, it can be very difficult to find another treatment plan and it will often result in treatment at a different hospital or in many cases, in a different state. Children in poorer countries? They are fortunate to get a 20 year old chemo. This is an issue one of Esther's doctors has passionately researched and dreams of changing. How cool would it be to bring cures to children who have no hope of survival?! The research can't happen there, but we can help bring the results to those families.
We can come at this in a couple ways....it can feel so overwhelming. Any money given to research is just a drop in the bucket, is it really helping? That outlook is completely understandable, and there are ways to help in a more tangible way. Maybe you're a person who wants to be a part of the life saving research, even a small part. Here are three ways to pursue both of those reasonable, neither one is right, outlooks on the problems of childhood cancer funding.
1. Cincinnati Bengals' Devon Still Jersey
Many of you have heard about the recently cut Cincinnati Bengal player whose daughter has neuroblastoma. The team did Devon Still a solid, keeping him on the practice squad so his daughter could continue to receive insurance benefits. That was a pretty awesome decision. His jersey has broken more sales records than any other player's jersey in the history of the team! Even better...they are donating the proceeds to the children's hospital in Cincinnati. This is the same hospital Esther was scheduled to receive her
experimental MIBG treatment. So, maybe you know a Bengals fan who needs a jersey. Or maybe, like me, you've become a Bengals fan and need one for yourself. In all honestly, I dislike professional sports for many reasons, but this team has shown such character, proving that when you do the right thing, it benefits everyone. I'm unapologetically saying I will root for them, even if they are playing the Denver Donkeys. You can buy a jersey here.
The money donated to this specific hospital will both support research and practical supports of the children at Cincinnati Children's Hospital.
Who doesn't love a good tote, bag, or purse? My friend, fellow mom of multiples, and continually, faithful supporter of our family, sells Thirty-One Gifts. This month she is donating all commission from any of her sales to Brent's Place. This is a great place to get teacher gifts, holiday gifts, and useful things for your home. There is an amazing special this month, with any $35 order you can get the All-Day Organizing Tote for just $15. I think I'll be getting one. My other favorite tote is the XL Utility...I use it all. the. time. You can order through Kim's website until September 21, and a nice chunk of your purchase will go directly to Brent's Place giving families undergoing the harshest therapies a free, safe, clean home where they can be together.
My sister, Robin, has been selling Premier Designs Jewelry for over a year now. She has a goal of raising $5000 during the months of September and October and splitting 100% of her commission between Brent's Place and St. Baldrick's, a WONDERFUL foundation for childhood cancer research. This fundraiser is for both opinions!
There are many beautiful options for all the ladies in your lives. Teachers, wives, friends, sisters, moms and daughters alike. There are two options...you can come to my house, Tuesday, September 30, at 6:45pm for some food and drinks where you'll be able to see and touch and try on many of the pieces. If you've never been to my house or think it will be weird if you show up...DON'T! Please come! Even if you don't want to purchase anything, I'd love to see you and talk with you and hug you. Please come, email me for my address. If that doesn't work, but you'd still like to order, you can view the catalog online and then call or email Robin with your order.
To view the catalog, please visit: http://robinegger.mypremierdesigns.com/. Click "Browse the Catalog" and enter the access code RE13 to check out what Premier has to offer.
Maybe you want to host a party?! She is gifting each hostess who books a party with the beautiful "Hopeful" necklace above. A sweet choice as it's gold, the childhood cancer awareness color. Every time you wear it you can tell the story of how you knew a little girl who had cancer, that you helped support research for kids with cancer, and gave families going through the most brutal therapies a free, safe, clean home. If you are in Colorado, she will come to you, but if you're out of state, she can do a catalog show. Visit her website for all of her contact info.
Here's a tid bit of info, due to a couple of cancellations, she still has all $5000 to raise! Let's get her on her way to generous support of Brent's Place and St. Baldricks.
Maybe none of these suits you and you'd like to just make a donation...go for it! Here's a few organizations to consider:
- St. Baldrick's
- Cure Search
- Because of Ezra This is a neuroblastoma specific organization. His family lives in Florida and work hard to honor all neuroblastoma kids.
- Alex's Lemonade Stand This organization supports all childhood cancers, but has some neat programs for schools and school aged children. It was started by a neuroblastoma warrior.
- Brent's Place has a wishlist, maybe you can fulfill some specific needs?
- Gabby's Bags Esther received one of these and we used it, and it's fun contents, throughout her treatment. Another charity started by a oncology patient.
- Your local children's hospital oncology unit. They can use funding for supplies, but also, their art therapy or childlife departments have needs for new toys, craft supplies, books, and other activities. Here's a really cool story from Children's Colorado featuring Esther's art therapist, Pat, and our friend, Izaac, who we met at Brent's Place.
- Donate blood. Oncology patients with little bodies need lots and lots of it!
Thanks for considering ways you might be able to help this month.