The Neuro-Oncology Board at Dana Farber and Massachusetts General planned on reviewing Leah’s case yesterday; however, two of her most recent scans were missing from the files that Akron Children’s sent them. As a result, her review was pushed back until next Wednesday. We are also trying to locate the pathology reports from Brigham and Women’s from last October. Every day, I’m making phone calls and sending emails to ensure everything is in place for next week. After they review her case, we’ll have more details as far as her treatment and traveling.
Leah was unable to have treatment today. Her lab results showed that her kidneys are not tolerating the chemotherapy. It is not safe to continue this regimen, so we met with Dr. Rush this morning to discuss our options.
In the near future, we will travel to Dana-Farber/Boston Children’s to discuss the possibility of participating in a trial. After the visit, we will have enough information to make a decision.
Thank you for your continued prayers.
This Tuesday, Leah will have labs to make sure she is ready for chemo on Thursday, September 17th.
We have made changes to her physical therapy, resulting in considerably less ankle pain. She is wearing Neoprene sleeves on her ankles for dance. Her first nights of tap and jazz this week were a success. My girl LOVES her dance!
We also made an adjustment to the length of her school day, without missing instruction in her core subjects. No more passing out on the couch at 3:20! In fact tomorrow we are headed straight from school to the gym to swim a few laps 🙂
Her next MRI and chemo are scheduled for October 8th. Dr. Rush won’t be there on the 8th, so we won’t have results until the 12th. Will be a long four days of waiting, but I’m thinking of it as four extra days for prayer.
When we were expecting Gracie, one of the first things we purchased was a nice camera. And lots of film. You remember those thin, plastic, transparent strips rolled carefully inside our cameras? Ha ha.
After the girls were born, I was a dedicated scrapbooker. Developing hundreds of pictures and strategically placing them in scrapbooks surrounded by stickers and ribbons. As the girls grew older, there was less time for scrapbooking. I was still taking lots of pictures, but now they were digital. Since the switch to digital, I’ve never been good about developing my pictures. The pictures are in files and folders and clouds (I think). I’m sure there will come a time when I return to scrapbooking, whether it’s digital scrapbooks or old-school paper and tape. In the meantime, I try to keep the girls’ school pictures, projects, and certificates in order. Each school year, I label a white, cardboard shirt box with the year and grade. Nothing fancy. I just scrawl on the box with the first pen I find in the junk drawer, and if the box is in bad shape I reinforce the corners with some scotch tape. Then as we empty book bags on the kitchen counter, I occasionally save favorites for the shirt box.
Since Leah’s diagnosis, there have been lots of pictures, newspaper articles, certificates and such without a home. All being related to her brain tumor, her school box just didn’t seem like the right place. A few pictures developed and placed in an envelope on a shelf. A CD of pictures tucked under a package of notebook paper in the office. A newspaper article folder neatly on the top shelf of the coat closet. And even though I was sure I wanted to save these things, I wasn’t okay with the idea of honoring them with a place of their own. Scattered about, they were less significant. And even if I did place them in a shirt box, I didn’t know what to write on the box.
Then, this weekend, I started to have a change of heart. I saw so many people wearing their BraveStrongGirl shirts, and I got to thinking that I would love to have pictures of all these people in their shirts! Lots and lots of pictures!!!
This is where I need your help (again). Please send me a picture of you wearing your shirt. You can text me, or send it to my email (firstname.lastname@example.org). It can be a selfie or a group photo- any pic will do. And please spread the word! I’m hoping to get a pic from every single person who bought a shirt!
And I promise you these photos will have a special place. I’d like to make a slide show for Leah, using every single picture sent our way. All of a sudden, three years and 1029 BraveStrongGirl t-shirts later, I’m finally feeling ready to give these things a place. I want them kept safe in one spot to remind Leah that she is brave, and strong, and loved. And now I know exactly what to write on the box! Thank you 💛