Tuesday, August 7, 2018
Proton Radiation...in Cincinnati, OH...uggh
We had our radiation consult today at Vanderbilt. The overall goal of radiation is to kill any remaining, or hard-to-see, cancerous cells in the main origination areas of a solid tumor. Due to the location and complicated nature of Caroline's tumor, she requires a newer form of radiation called "proton radiation therapy." Proton radiation therapy is a more targeted form of radiation, compared to the more common "photon radiation." Proton radiation will also be safer for Caroline, hopefully causing fewer long-term side effects.
Unfortunately, there are no pediatric proton radiation therapy locations in the Nashville area (ironically though, there is one opening 2 miles from our house later this year, but because Neuroblastoma is so aggressive, she needs to start radiation asap). The closest (and best!) proton therapy center for the type of radiation needed/area of her body is located in a suburb of Cincinnati, Ohio. Cincinnati Children's Hospital is currently ranked #1 in the nation for pediatric oncology! We do not have all the details yet, but within a few weeks, we will have to travel to Cincinnati, OH for the radiation phase. Caroline will be receiving 20 radiation treatments, which are administered Monday - Friday (4 weeks, unless something unexpected were to happen). Prior to the proton therapy, she will have to get planning scans and a mat that is sculpted to hold her body, so she can lay in the exact same position each day. The radiation is performed under sedation, and is about a 2 hour-a-day process, start to finish, and is considered an outpatient treatment. We are in the process of finding a clean, safe, isolated hotel/condo/airbnb for her to rest and recover each day. All in all, we anticipate being in Ohio for about 5 weeks. As mentioned, we don't have all the details at this point, but we will share those as they progress later this week.
This will be another unexpected and challenging balancing act for our family. Andrew goes back to school this coming Friday (8/10/18), and Fall baseball is also starting up this weekend. We will now have to plan to be separated again, without the option of quick visits to the hospital (like we've been doing, to try and keep some semblance of family togetherness). Just like we've been able to do so far, we will figure it all out somehow, but this is certainly very mentally and emotionally draining...especially coming off the heels of her recent high-dose chemo/stem cell transplant inpatient stay.
We appreciate all the kind messages of support, the calls and texts, etc. For those that continue to ask how they can help, please see the donation link below. In addition to the never-ending medical bills and expenses, we will now be adding travel, lodging and meal costs for the 5 weeks in Ohio to our list of unexpected expenditures. We appreciate any and all support. Thank you all!
If you would like to donate, click here: https://www.paypal.com/pools/c/80FGIeu7k1
Waiting, waiting, waiting...
Caroline's little friend Molly's last radiation treatment at Vandy was today, and she brought in cupcakes to celebrate! We were so excited for her! #mollystrong
"Sneak-a-peek" at school tonight...can't believe he's in 5th grade!
Carpool line pass has Caroline listed as a Kindergartner - wish she could be there with Andrew this year, instead of doing homebound instruction :-(