Last week started with an hour and a half meeting with the neuropsychologist to go over the results of the 5 hours of testing that took place two weeks before. After the meeting, we were sent 15 pages of test results. It was a lot. But, to sum it up the best that I can with my limited knowledge of how the brain works, basically, my daughter has a lot of strengths that have helped her compensate for the effects of surgery and radiation. She has extremely high reasoning and puzzle solving skills as well as verbal memory and processing that have helped her. We knew that her processing speed was significantly slower, and the tests did show that it is now below average compared to other kids her age. However, what I didn't realize was that her motor skills were also impacted.
The thalamus is the pathway that allows different parts of the brain to communicate, and it is particularly critical for motor function. Where she shows weakness is with graphomotor skills or writing. Basically, she uses all of her cognitive power to make her hand form letters and therefore cannot take in information at the same time. So, it would not be possible for her to listen to her teacher and write down what was said. She is also not likely to retain anything that she writes, and it will also take her an extremely long time to write anything. I noticed this in May when her teacher sent some story prompts for her to complete, and it took her a day and a half to complete the assignment. It was a great story, but man did she work on it forever. She also said that she noticed the change in class as well. Her teacher has students write story summaries, and when they are done, they can have free time. The result of that is my daughter does not get free time.
The doctor's recommendation is for her to have access to dictation software and the ability to complete fewer questions if writing is involved. That will be absolutely necessary for any standardized testing. Additionally, while some things like her memory might improve a little, most of these changes are permanent. In fact, she could see improvement in a year and then experience decline a few years later due to late radiation effects. Its a hard pill to swallow, but it is also just one of those things that people have to adapt to. Extremely capable athletes get hurt and can no longer play. Extremely smart kids get brain tumors and have to learn new ways of doing things. When accessibility advocates say that anyone can become disabled or need assistive tools, it is absolutely true.
Anyway, the next morning was her post-radiation MRI and office visit. This is the first time since her hospital stay that she did the MRI awake. She was really nervous about it, and getting an IV specifically, but she handled it like a champ. The MRI was only of her brain, so it took less than an hour. It is a much quicker process if they don't have to put patients to sleep, so I was glad that she was so calm about it.
The results of the MRI were ok. There is still some swelling in her ventricles, but it has gone down a little. There is also some fluid that seems to be old blood from surgery. It all seems to be normal post-radiation, post-craniotomy swelling, but if it doesn't go down further, we may have to consider a shunt. She also lost weight after radiation, so we are starting an appetite stimulant to try to get her back on her growth curve.
The good news is that there is no tumor. However, that disqualifies us from T-cell trials that want to have disease to actively watch. Instead, we are trying to get her accepted to PNOC022, which is a Phase II drug therapy study that looks at ONC201 in conjunction with other treatments like everolimus, which has shown some effectiveness with H3K27M/FGFR1 co-altered tumors. Plus, there are study locations close to home. Unfortunately I think there are political issues between Duke and Charlotte, so Duke has said no to her getting treatment there, but there are study centers in DC and Columbus that our doctor is reaching out to.
After all of those appointments on Tuesday, I took my daughter to the Cheesecake Factory for lunch and we treated ourselves to calamari, pasta, and cheesecake. Did I spend $100 on lunch? Yes. Would I do it again? Yes. Then we explored the fancy mall in Charlotte and ended up in Nordstrom's buying new shoes.
Wednesday night, I took my 9 year old and 4 year old up to Virginia to my parents' house. My mom had purchased Lindsey Stirling concert tickets for my eldest's birthday back in May. My daughter listened to her music in the hospital, during every radiation treatment, and during her MRIs, so she was pretty excited about the concert. In August, while in the waiting area during a radiation treatment, I sent an email through Lindsey Stirling's website. She has a link to "Wish Fulfillment" and I definitely played the cancer kid card to get us free VIP passes so my daughter could meet Lindsey. Her team emailed me back and were so nice. When we checked in the VIP experience on Thursday, they knew exactly who we were. During the meet and greet, Lindsey spent a little extra time with with us, and we got a few more pictures than normal. My daughter said "I didn't even know that was possible!" So, that was pretty special.
The concert itself was a hilarious experience. When we got there, I noticed that there were a bunch of people wearing black, fishnets, leather boots, and metal band t-shirts. Then there were the Lindsey Stirling fans wearing not that. Obviously, I did not look up who she is on tour with or I would have known. It turns out Lindsey Stirling is on tour with metal bands. Imagine being at a metal show with your mom and your 9 year old daughter who is wearing lavender shoes with butterflies on them. Hilarious.
The first band turned out to be great. It was Apocalyptica, a metal band from Finland who head bang while playing Metallica covers on cellos. My daughter was yelling and throwing metal horns, while my mom asked what that hand sign means. Lindsey's show included a Sandstorm cover, a cover of I'm Blue (Da Ba Dee), and Kashmir by Led Zeppelin. She was the middle act, rather than the headliner, so it was fun, but her set was only an hour and didn't include any aerials like her Christmas shows. Her set also included a lot of death and angel imagery, so that was interesting. My daughter LOVED it. We didn't stay long for the last band, Halestorm. It was late, we were tired, and we didn't know any of the songs.
We came home on Saturday. While we were gone, the girls' passports came in the mail, so we can get on with planning the Make-A-Wish trip. I also have a meeting next week to update her 504 plan. Other than that, my girl is trying out for the school's robotics team tomorrow and is trying to decide which part she wants to audition for in the school's Mary Poppins play this year.
Metal to watch with your mom
Apocalyptica "Ride the Lightening"
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