I took last week off from writing. I've been busy driving kids to and from camp, doing chores around the house, and coordinating with nurses, social workers, and friends to figure out what the next few weeks are going to look like.
Tomorrow, we will find out officially if there is a spot on the trial for my daughter. We had to wait 3 months after radiation to enroll, and that date is tomorrow. After they hold a spot for her, we have two weeks to sign up and begin. We will be driving to Cincinnati July 6 and then meeting with the team July 7 to go over the trial details and sign all the forms to enroll her. She'll have an ECHO and an EKG after that. On July 9, they'll do an MRI of her brain and spine to get a baseline before treatment. We've decided to try having her do them awake now that she is 10. The brain MRI is about 45 minutes and the spine is about an hour. Doing them awake will make the whole process quicker and easier to schedule. As long as she can wiggle between and listen to music or watch a movie, I think she will handle it fine. Her least favorite part is getting the IV inserted and doing the MRIs together will mean just one poke, which she would prefer. After that, we have several days to fill before we have to be back on July 14. We have some tentative plans, but we'll just have to see how my daughter is feeling.
In order for all this to come together, I have had to coordinate with the nurse at Cincinnati about the schedule and details, talk to their social worker and our local social worker, fill out forms to stay at the Ronald McDonald house (background check required), find out there's not room this time, find somewhere else to stay that is close to the hospital and affordable, and apply to be part of some local foundations that can connect us with other families and events. I've had a nurse and a social worker from my insurance call me (what they do, I'm not entirely sure) and we have to make sure we have enough of her medications to last for any travel. This means important phone calls coming in while I'm in the grocery store or the car and keeping track of so many emails I'm sure things get lost in my inbox.
I feel pretty competent at getting it all together, but I also recognize that it is a lot of work. I think about how much more difficult this would be without the resources we have. The most basic being that we speak English. I also have a laptop and the internet so I can research and fill out forms easily. We've been able to save money in the last year, so traveling doesn't create a financial hardship for us right now. We also have friends and family who have connections and resources they've been able to offer us that have really helped. For this trial, we will have to travel to Cincinnati every 28 days as long as the medication is working. That is a 7 hour drive or a $400-per-ticket plane flight. If we didn't have a reliable vehicle or money for flights or jobs that would allow us to take time off, this would be inaccessible to us, even with support from non-profits. For some, even just finding and signing up for support from a non-profit is challenging.
Socio-economic status and our proximity to a children's hospital directly correlate to health outcomes, obviously. Black and Hispanic children die from cancer at higher rates than white children for a multitude of reasons including income, language, and medical bias. Navigating all this pediatric cancer stuff is challenging for us. Without all of our resources, it would be almost impossible.
For me and the other pediatric cancer parents I've met, we do all this and more because not doing it, not doing something, feels like giving our kids a death sentence. And, honestly, I don't have a lot of hope that this treatment will work, but even more I dread the moment when we are told that there are no more treatments available for us to try.
A Song About Sharing the Burden
The Decemberists, "Don't Carry It All"
No comments:
Post a Comment