Today is the last day of radiation. The team at the photon radiation center have been really great. They greet my daughter with warmth and enthusiasm every time. They have her music queued up, and they recently gave her a few new squishies to play with during treatment. Despite the horrible reason why we go, they have been kind and I hope we never have to see them for treatment again.
After that we have meet the teacher night and then a celebratory Italian dinner to mark the end of this stage.
I was talking to a friend this weekend about what the next school year will look like. Her son is starting high school, and only a few of his friends are going to the same school. She commented on how he has grown so much over the summer and is starting school changed and more mature. Then she said how my daughter is different because of what she has gone through this summer, and she is different in ways that her peers can't understand. Neither of us are sure what this will mean for our kids this next school year. We definitely can't take away the challenges they will face, but we can at least guide them through it.
I don't know why I hadn't thought of that before, but I just didn't. I was thinking about her changes as deficits - things that would prevent her from keeping up with her friends. But, they aren't that. Yes, her brain processes information differently than before, and she might struggle with tasks that used to be easier, but she is also changed in her ability to handle challenges and pain and in her compassion for others. It sucks that she has to go through this, but there can also be growth through it too, and those differences aren't bad things.
It is easy for me to get stuck in a deficit mindset. To focus on people who haven't shown up in the way that we've needed or wanted. To focus on the difficulty of our present moment. But we do have a lot to be grateful for, and I think it is healthier to put our energy into being thankful for what we have and the people who have extended support in whatever way they can. We can also count the ways we've grown stronger and how we can act with more empathy for others because of what we are experiencing. I know I've written about this before, but I have to constantly remind myself to shift my focus and perspective.
So, today is the last day of radiation and we are working on thank you cards for the radiation therapists. I hope they know how much their small acts of kindness and care helped make this process a little easier.
A Song about Gratitude
Brian and Kate Torwalt, "Hallelujah in the Hard Things"
My daughter has 3 radiation treatments left. We've completed 27 so far. She has handled the last month of appointments without complaint. My husband, my mom, and I have split up the task of driving her to and from appointments, but obviously she has had to go to each one. It take about 30-40 minutes to get there depending on traffic, so by the time this is done, she will have 30-40 hours of being in the car, 30 radiation appointments, and 3 blood draws. Before school starts in next week, she will have had 45 medical appointments since her surgery in May.
We did not take a real vacation this summer, and we could really use one. But, school starts and work continues, and so we go on.
My daughter has not had many side effects during treatment, but she has been really tired this week and has been less hungry overall that usual. She did not eat much dinner on Sunday night, and Monday she got dizzy and fell down, hitting her lip on the fridge when she was trying to get some orange juice. She stayed home from camp Monday and Tuesday, but went back today.
Yesterday afternoon we met with Make-A-Wish, which seems like a right of passage for parents of kids with cancer. My daughter wants to "go on a cruise to multiple islands." When the volunteer asked for a non-travel wish as a back up, my daughter couldn't think of anything. When a shopping spree was proposed, she said she already had enough stuff. We decided that her back up is a mini art studio in her room.
It feels weird accepting gifts like this because we can afford to take a cruise. We can afford to buy our child whatever she wants. But, I guess it is the fun of allowing her to pick something and having it come true. And, it will be nice to let someone else do the planning.
In the meantime, I've been researching clinical trials. We have to wait until after her follow up MRI in September to see what she is eligible for. CAR-T cell trials would require us to be in another city or at another hospital for a month to 6 weeks. The timelines and requirements are different depending on the trial, but basically she would be in the hospital for at least a week, and then we would do follow up appointments weekly for a while. There are trials are in Seattle, San Francisco, Houston, and Memphis. Those are all plane flights away, and we would have to live there for however long until the appointments get spaced out enough that we could go home. It is overwhelming thinking about the logistics of how that would work. But, families with kids the same age or older than mine are making that choice for hope of a treatment that works.
There are 2 children who are on a CAR-T trial at Seattle Children's. They both have DIPG and have survived on trial for 4 years when the average survival is a year after diagnosis. However, they have to get T-cell treatments every 3-4 weeks. One family flies from Vermont to Washington every month for treatment. That is an extra $1,000 every month for just plane flights, not to mention the logistics of flying with a sick child, taking off work, and leaving other children at home. The commitment and requirements of that astounds me, and I wonder what that would look like for us.
There are other trials for ONC 201 and 206 that would require less hospitalization and be within driving distance. There have been some "successes" with those drugs here and here. But, when you see those stories, and then look them up to see where those people are now, they are usually dead. So, it may work for a few years, but cancer, especially brain cancer, is tricky and mutates and treatments stop working. Tumors grow back and can't be surgically removed. And for every "success" story, there are many more stories of people for whom treatments did not work or who were unable to get on a trial at all. Just yesterday, this story of an actress named Kelley Mac who died of DMG was all over my new feed.
School is starting next week, and I want my daughter to be able to attend as normally as possible. But, is it that really a priority when her life is at stake? How much do we balance normalcy and the need for treatments that would extend her life?
We recently attended a local baseball game curtesy of the Pediatric Brain Tumor foundation. Both of my kids were taken to the field with the team for the national anthem, hamming it up like usual. At the end of the game, we went onto the field to light lanterns for families like ours and to watch fireworks. The first family on the field was a family who had lost their son to brain cancer. The announcer talked a bit about their family and their son. Then families with children currently in treatment or who have survived brain cancer came onto the field, followed by support people like medical professionals, friends, an extended family. We were standing in the in field near second base turning around and looking at all of the lights. People in the stands had their cell phone flashlights on. My daughter started crying, I started crying. It was a lot. Later, my husband asked her why she was crying and she said that she was so sad for the family that lost their son but also happy that her tumor had been removed.
When my daughter had her craniotomy, I was initially worried about changes she might experience. Who would she be when she woke up? Depending on the part of the brain that is affected, some children have trouble walking and talking. Some experience personality changes or mood swings.
In her case, she was able to walk and talk after surgery. She was a little weak at first, but was able to walk around the block within a week. She was able to remember things and her personality came back. All of those were a huge relief. But, in the three months since surgery, I have noticed some changes, particularly to her executive functioning skills and concentration. I am thinking about these things because I will need to work with her school to create a 504 plan for her. We also have neuro-psych testing at the end of the month to make sure she has appropriate accommodations. So what have I noticed?
Before surgery, she would get herself up for school, get dressed, and make breakfast before the rest of us got out of bed. Now, she can still do those things, but it takes way longer. She gets distracted and forgets what she is doing when she walks into a room. She has to be reminded of tasks frequently. She has trouble remembering steps to tasks that she's done many times before.
When she was in kindergarten, I used to sit on her bed in the morning and constantly remind her what she needed to do next so that she could make it to the bus on time. Then, in first and second grade, she had a list she would use to stay on task, but could manage her morning routine herself. This year, we may have to return to the lists and the step-by-step guidance.
My daughter has never been the kind of kid who can eat and watch TV at the same time. She gets sucked into shows and cannot multitask. She is still the same, but a little more extreme. Now, she cannot eat and listen to conversations around the table. She starts listening to what everyone is saying rather than eating. At dinner, everyone else is finished and she has only taken 2 bites, despite our constant nagging to eat, eat! At school, students have 10 minutes of silent lunch to eat before they can talk. This might be sufficient for her to eat something, but I'm not sure it will be enough.
When she was in kindergarten, I asked her teacher about testing for ADD. At gymnastics that year, we noticed that she was distracted by all the other kids there and was not able to remember routines like the other kids. Her teacher said not to worry about it until second grade because some of those things are age appropriate, and she might grow out of it. We chalked it up to her being extroverted and didn't worry about it. She was excelling in school, admitted to Composers in second grade, and then AIG in third grade. She made friends and was doing well.
Now, when I look at a list of executive dysfunction symptoms, she checks them all.
difficulty with organization (forgetting items)
problems planning an initiating tasks (needing prompting to begin projects)
challenges with focus (easily distracted)
trouble with working memory (forgetting instructions or multi-step directions)
difficulty with emotional regulation (strong reactions to things outside of her control or expectations)
challenges with social interactions (understanding cues and following conversations)
Some of these things are just things kids do because their brains are still developing. I have seen kids who struggle with these way more than my daughter. But, she did not struggle with these things before to the extent that she does now.
The hardest one for me to witness is the last one - challenges with social interactions. Its hard to see her being awkward or going along with something because she doesn't want to say she doesn't understand. In general, when she has had friends over, I can tell that she doesn't always follow what is going on and is a bit awkward talking. She has developed a stutter like she can't find the words that go next, so she repeats herself a lot. She says, "what?" and "got it" a lot when she is trying to follow conversations. And who knows, maybe she would still have these issues regardless because 9-year-olds are weird and awkward. But, I do think it is exacerbated by effects from her brain surgery. Her friends have been pretty patient though and no one, to my knowledge, has pointed these things out. They might not even notice or care themselves.
Then, last weekend, we went to a birthday party for a friend's daughter, and it wasn't great. While my daughter and the birthday girl don't go to the same school, they have done gymnastics and soccer together, and have been friends since preschool. At the party, my daughter knew the birthday girl and another girl, and that was it. Normally, it isn't an issue, and she will just play with whoever is there, but, they are entering 4th grade this year, and I guess that is when kids really start forming friend groups. So, at the party, my daughter, who is not really part of the friend group, was left out and ignored. No one was being mean to her, but no one was inviting her to join them either.
It was hard to watch and brought up a lot of my own issues about being left out. I know that figuring out who your friends are and aren't is just part of growing up, but its still difficult to witness your kid going through it. And for me, it's compounded by all of the other emotions I have about my daughter's situation. She's been through so much in the last few months, and I'm really hoping that she can maintain her friendships as we wade into whatever the future holds for us.
Of course, finding and maintaining supportive friendships is really hard as an adult, much less for 9-year-olds, who can be self-centered and oblivious about what other people are feeling. At the party, I watched as the two girls my daughter knew tried to plan a sleep over with my daughter sitting right next to them. My daughter excitedly said "Sleep over?!" and one of the girls responded, "I'm just talking to her right now." I had to go to the bathroom to compose myself, and then we left early.
That night when I tucked my daughter into bed, I struggled with how to bring it up. I don't want my interpretations or feelings to influence her, but I also want her to know that she shouldn't accept that kind of behavior from a friend. While she doesn't have to be invited to everything, it still isn't cool to have someone plan an activity you aren't invited to right in front of you. I told my daughter that what they did wasn't nice, and that if she ever feels uncomfortable anywhere or like she is not having fun, that we can just leave. She cried. I cried. And the next day, I invited one of her good friends over to play, and they got along great.
