The only real extra event that week was a visit from my godmother, whom we hadn't seen since our wedding. She met up with the kids and I at their acting class, then spent the afternoon/evening with us as well as some time the next morning. We had a great opportunity to reconnect with each other, and it was also a chance for her and our kids to meet and interact.
Besides Bonnie's visit, our family thoroughly enjoyed the fact that our next door neighbors were getting their driveway redone that week. Two different mornings, the kids (and maybe some adults, too) had breakfast out in the driveway so they could watch all of the machines work.
This past week was busy, but in a different way. A few moments of the week brought back memories from last summer, specifically the medical lingo, the separation, and the need for flexibility.
Tuesday night I remembered that the girls and I had appointments to get our hair cut on Wednesday morning ... oops. I need to do a better job of writing down the non-medical stuff on the calendar, too. Good thing Matt was planning on taking the day off anyway.
We all got a nice trim, Anna included. A few tidbits about Anna's hair, for anyone who is interested. Prior to cancer, her hair was light brown, almost blond, and very fine. She never had the thick, full head of hair that her sister has. We were told that with Anna's radiation treatment, the possibility existed that she would never regrow any hair.
As Anna's hair started coming back in, we noticed that it was very thin and sparse in the back by her biggest scar, which is where she received the brunt of the radiation. This lack of hair is pretty typical for someone who has had the kinds of radiation that she had; in fact, our nurse practitioner said that it's actually better than expected.
In the grand scheme of thing, thin hair back there is not a big deal. Once Anna's hair gets longer, you won't be able to notice unless you are really paying attention. But it will always be a reminder of what Anna has gone through.
Overall, Anna's hair is coming in dark, wavy, and very thick. We've been told that the color and texture of a person's hair can change after radiation and chemotherapy, but that it often continues to change for a few years as well. As with many things, we will just have to wait and see.
Thursday morning Anna had her periodic opthamology appointment. During the course of the exam, we learned that Anna will need to wear special prism glasses for awhile. Although we as parents didn't realize it, Anna still sees double at distances; her eye muscles got no better or worse in this regard since her last exam in January.
Specifically, the muscle that is supposed to pull her left eye into the straight position can't quite get there. Initially, the tumor was blocking the muscle from physically doing its job; then the radiation set all of her neuro-muscular system back to square one so her eyes were having difficulty tracking movements at all, let alone tracking together; and finally the rounds of chemotherapy caused such fatigue that those unconsciously controlled muscles just didn't have the energy to correct the issue completely. The doctor thinks that since Anna saw double for so long, her brain has gotten used to it and so it isn't going to fix this particular issue without intervention.
Thus the glasses. At first, the prism lenses will do all of the work to help retrain Anna's brain to see one image instead of two. Then they will gradually decrease the intensity of the lenses to challenge Anna's eye muscles just a bit at a time. Hopefully, Anna will eventually graduate out of the prism lenses.
No big deal, at least when you have the perspective that we have.
While at this appointment, I received a call regarding neuropsychological testing scheduled for later in the summer. There was a cancellation for Friday and would we like to take the spot. Yes, please!
What is neuropsychological testing? Good question. The specialists have a variety of forms, tests, mental exercises, etc. to help determine how someone's brain functions, especially how their brain learns. They gather as much information as possible from a variety of sources to try to provide parents and educators with some specific ways that a child's brain is different and how best to help them learn.
Any child who has undergone any kind of treatments for cancer typically has neuropsychological testing at some point. Kids like Anna who have had cancer within the central nervous system, not just medulloblastoma, often go through the testing multiple times. Since different parts of the brain mature at different times, some deficiencies may not surface until years after treatment, thus the need for repeat testing.
I spent Thursday afternoon trying to gather all of the information that I was supposed to have prior to the testing - 504 plans, IEP testing results, OT, PT, speech evaluations and reports, teacher forms, school testing results, our own forms, etc. I thought I still had six more weeks to get everything together, but plans change.
Friday morning Anna and I arrived at the main UW hospital at 8:00 a.m. for the testing to begin. I will admit that I was anxious and nervous about how all of the mental exercises were going to affect Anna. We were just coming off of the extreme fatigue of the previous weekend and I was worried that she would crash early and hard.
Of course, I worried unnecessarily. This kind of testing was totally up our daughter's alley. Mental challenges, memory tests, math problems, stories, etc. It's the kind of stuff she loves. As with any kid, she was allowed a 10 minute break every hour, more if she needed it (which she didn't). I advocated for a room in which Anna could lie down during her breaks; I think that helped a lot. She was also allowed a 60 minute lunch break, but after about 30 minutes of lying down, she started asking when she could get back to work. What other kid has fun during neurpsychological testing?
We finished up around 2:30, made a few stops at the Children's Hospital, and then headed home to play in the pool. Anna was ready to be physically active after thinking so much all day long.
Matt and I are scheduled to review the results with the neuropsychologist in a couple of weeks. As I told the doctor during the start-of-the-day interview, I don't expect too many surprises. As Anna's parents, we knew her the best before cancer, and we are certainly the experts on her now. But having the information documented in an official way will help insure that Anna receives whatever services to which she is entitled, especially at school.
And how did we manage all of these appointments and the need for flexibility? With Leah, of course! Leah will be helping us out again this summer, albeit on a much more limited basis than last summer. The kids took to her right away, but by Friday evening I certainly missed my Kate and Ethan and I'm pretty sure they were affected by the change in routine, too.
On top of everything is the garden. All the rain in June has created a green and growing jungle out there, but the cool weather seemed to stunt a few of the plants, too.
Our pea pods are finished up; the kids loved the fresh ones and I managed to freeze quite a few quarts. The broccoli was kind of hit and miss. I lost a lot of plants in May due to some strong winds; the plants were just twisted away from their roots. However, the plants that survived did very well and we are still eating and freezing some of the delicious fresh broccoli.
The beets were quite tasty, but Ethan told us over and over "I don't like beets. They aren't my favorite." To his credit, he tried one early on in the season, but gagged on it. I think it's the only food he's ever gagged on ...
The raspberries have been amazing this year; I'm hoping that at some point we'll be able to make some jam with the berries I have frozen.
Kate and Ethan have had a handful of cherry tomatoes already, but the big tomato plants are struggling with the weather. The cucumbers and summer squash are just beginning; I anticipate needing to pick the first big batch of green beans this week. Finally, if the weather holds up and we don't have any nasty storms just as the corn is tasseling, we should have a great corn crop.
Here comes another week!
Time for Prayers
Thanksgiving
Please give thanks that we were able to have a family vacation this summer.
Please thank God for all of the specialists who have worked with Anna, and who continue to work with her.
Please thank God for the flexibility of summer schedules.
Please give thanks that Leah is able to help us out again this summer.
Please continue to give thanks for the peace, patience, joy, love, wisdom, and kindness of those within and surrounding our family.
Requests
Please continue to pray for all those working with Anna and our family.
Please continue to pray for our overall health and well-being.
Please continue to pray for peace, patience, love, joy, wisdom, and kindness for those within and surrounding our family.
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