We had an oncology appointment yesterday. It was a strange one. Our doctor came in and let my daughter tell him about the book she was reading for a while (Unfairies by Huw Aaron). We talked a bit about trial options and medications, but then it went back to telling jokes. And that's it. We don't have another appointment until June. In the past year, I don't think we've gone over a month with no medical appointments. It feels weird.
Before and after her surgery and radiation, there were lots of serious discussions about all the horrible things that could happen and things we needed to be prepared for. My daughter has lost some weight, but nothing too dire. Her white blood cell counts are low, but that's normal. So, we just wait until her next MRI to do anything or make any decisions.
I asked about moving the MRI up, but our doctor explained that if you do the MRI too soon, then it won't be as accurate due to radiation-induced changes and swelling. Also, apparently the MRI starts a countdown clock on getting into a clinical trial. I told him we were going on vacation at the end of the month, and he didn't want that to be hanging over our heads then.
Instead, I guess I'll just focus on all the things we have going on this month - visits with friends and family, my daughter's birthday, Mother's Day, end of the year performances, my youngest's preschool graduation, a trip to the beach, my 14th wedding anniversary. Just a few things on the calendar.
In June, I have my daughter signed up for a few camps. One is an art camp - drawing and ceramics - that I signed her up for way back in January or February. They let me put off paying for it until it was close to getting full because I wasn't sure where we would be in June. They emailed me yesterday saying there was only one spot left. So, I paid for it. I had also put off paying my friend back for a lake house reservation in July. I went ahead and paid her yesterday.
I don't know if the vibe of yesterday's appointment is because they are happy with her health or because there really isn't anything we can do right now but wait. Either way, I suppose I'll just take it as license to let myself breathe for a bit.
Ten years ago on May 1, we were waiting to see when my daughter would make her arrival into this world. Like most first babies, she eventually came on her own time, 10 days late. Almost year ago, on May 1 we discovered that she had a brain tumor and required immediate surgery. She came home from the hospital and a few days later we celebrated her 9th birthday on Mother's Day. These milestone dates, her birth and now her diagnosis feels woven into the fabric of my motherhood in some defining way.
From time to time, I think about what it means to be a mother. There's the joy in watching your child grow up, take their first steps in your own kitchen, and then climb up the school bus steps and out into the world on their own a little at a time. But there's also pain and loss. There is the obvious pain of childbirth and the loss of an identity independent from your children. There's all the little losses and pains of watching those children grow up and move away and need you less and less. My youngest still comes into my room to snuggle every morning and I don't remember when my oldest stopped doing that.
When I got pregnant with my oldest, my husband and I had conversations about what we would do if our child was born with a serious disability. Without really knowing what that meant, we said of course we would accept and work through whatever we were handed. That's the deal you make when you decide to bring a child into the world. But the reality that we may have to watch that child die was not one that we truly considered. I mean, how can you conceive of that, really, unless you are faced with it? To go from watching someone take their first breath to taking their last?
As we come up on a year of cancer, anticipatory grief has been hitting me pretty hard. Ask DMG/DIPG parents how long their kids lived after diagnosis and you will get a range of answers - some in weeks, but most in months. 3 months, 5 months, 8 months, 13 months, 16 months. How many months will we get? In some ways, its compounded by the fact that she looks like a cancer patient now, and I can't pretend that everything is normal when we are out in public anymore. Radiation has stolen her hair. She looks thinner and has a ganglier walk now. My photo memories keep showing me pictures from a year ago, two years ago, when everyone was healthier and we had no idea what was coming.
Last week, we were at Charlotte Shout, a local art and music festival. We stopped at a booth that was selling customizable hats. My daughters picked out hats and patches to go on them. The woman at the booth helped them figure out patch placement and ironed everything on. It was really cool since my kid wears a baseball hat everyday now to cover up her patchy hair. The next day, the woman texted me. She wanted to get connected with someone who could help her organize an event for kids who have lost their hair like my daughter. I connected her with our social worker. It was really nice, and I hope she is able to put something together. But, also, it's another reminder that the marks of this diseases are more and more obvious.
During and immediately after radiation, I was doing ok. Crying less, worrying less despite whatever I wrote here. But, last week I got an email from our DMG nurse navigator. I had sent her a few clinical trial options we've been considering along with some other questions. She told me what the side effects of these treatments have been and how kids have responded, and it just felt like we truly don't have any good treatment options. The trials that seemed promising have all lost funding or been deemed unprofitable by pharmaceutical companies. It feels like we are reaching the end of what is possible and available for us, but I'm not ready to stop trying to find something.
We have an oncology appointment next week. We haven't had one for a month, and I am dreading it and looking forward to it at the same time. I want to figure out the next steps, but I also don't want more hard conversations.
As a mother, I have to hold it together in front of my kids. To the best of my ability, I have to make sure that they aren't scared, that they feel taken care of and secure, and that they have a good quality of life while they are here with me. And that means I have to shove down all my grief and fears and worries and heartbreak in front of them. Of course we still have conversations about cancer treatments and fears, but I let them lead it and try not to push too much.
Today in the car on the way home from school, my youngest asked what I thought heaven was like. I asked them what they thought. My youngest said it was green with the softest grass ever. My oldest said it was probably filled with colors that we've never seen on Earth. They determined that you get to pick how old you look in heaven. My youngest would want to be 4 because she misses having long hair. They both thought that they would see their dog and their grandfather's dog and they wouldn't be fighting in heaven.
We are at a weird crossroads with my daughter's treatment plan. We have to wait until the next post-surgery, post-radiation MRI to see where we are with her disease. Right now, that isn't scheduled until mid June! They want to move it sooner, but scheduling is so tight. In the meantime, we got the pathology back on the new tumor. It still has H3K27M, FGFR1, and NF1, but added a PI3K mutation.
With this new information, I spend a lot of my free time googling mutations and inhibitors. I'll stalk the online groups to see what medications or trials other people are doing and then google those to see what they are for. I've read so many different articles that I really need to be keeping better track of all the information. There is a constant underlying feeling that I am missing something that could work for her - or maybe that I stumbled across it and cannot locate it again.
Brain cancer research and treatments are all so complicated. There are so many different mutations and so many different drugs and trials that target different things. No two patients are exactly the same - same mutations, same tumor locations, same age, same symptoms. I'll find out about someone who had success with one treatment and then hear about 5 others for whom it didn't work. I do think that as a parent I have an obligation to research all of this even though I am not a doctor. I have one patient to focus on, and perhaps that singular focus can uncover something our doctor hadn't considered. On the other hand, as another parent wrote, maybe this is all the arrogance of love that I could know better than our oncologist who has been practicing and teaching for over a decade.
In addition to whether or not something will work, there are also the side effects to consider - hair loss, nail infections, skin rashes, vomiting, nausea, diarrhea, liver and kidney toxicity - and whether that would be worth it for more months and more time. An adult can decide what they are willing to put their body through, and while we will heavily consider my daughter's wishes, we have not given her all the information about her disease. I mean how do you tell a 9 year old that very few children with this diagnosis survive longer than 2 years?
Before spring break, my daughter's school had field day. Because she was still healing from surgery, I knew that she wouldn't be participating in most of the events. I went anyway because I had to check her out early for radiation. I sat on the sidelines and watched all of the other kids run their races. I couldn't help feel envious of these kids who looked so healthy and their parents taking pictures and cheering them on. I wanted the uncomplicated joy of watching your kid do something, even if it's just a potato sack race. I don't know that I will ever experience that again.
I've started a couple of drafts here in the last few weeks, but nothing I've really fleshed out as complete thoughts yet. It has been a busy few weeks and I haven't really had a lot of time to reflect and record.
First, allergy season hit hard again this year. I don't tend to get spring allergies, but my husband was taken down for a solid 2.5 weeks. On top of that, I had tons of work to do, a Girl Scout meeting to plan, and all of the medical appointments: MRI, radiation treatments, clinic check-ins, PT, and meetings with the school nurse. That doesn't even account for the everyday household tasks like dinner, dishes, laundry, yard work. Life is busy and not always in good ways.
We are done with radiation now - 10 sessions total. The first day, my daughter's favorite tech came to get us from the lobby. He is loud (probably because he has to talk to a lot of older people), tells lots of jokes, and generally just tries to make everyone comfortable. This go round, she opted to listen to a lot of Taylor Swift, so he would have that blasting down the hallway every afternoon. Her favorite album is Reputation, but 1989 makes an appearance every now and then. Everyone on the team took care to make sure she was comfortable with the mask. They had to spend a lot more time lining all the machines up correctly because they were working in some critical areas, but they would make sure to check in with her. The first day, the Child Life specialist sat with me for the entire session, about 40 minutes, just because.
My daughter mostly breezed through it all. The sessions themselves are easy at least, and she tells jokes to everyone. Afterwards, she would get tired early. There was some vomiting at night, and the second week she started to have a sore throat impacting her ability to eat real food. Crunchy and/or hot foods made it worse. One night I made spaghetti, her favorite, and she cried because she couldn't eat it. Instead, she's been living on mostly smoothies. My mom bought us a Ninja, and I have made so many smoothies. We settled on this one as her favorite: frozen fruit (mango, strawberry, blueberry mix), whole milk yogurt, whole milk, full fat coconut milk, honey. Sometimes I'll add spinach or peanut butter, but often not. It comes to about 500-600 calories per smoothie. Gotta get those calories in! I want to drink them so bad because they taste so good, but um....I don't need the extra calories.
We've also been trying to fit in friend time and chill time as much as we can. She went to a birthday party, had a friend over for the day, and visited with my brother and his family. We finished Gravity Falls (again) and we went to see Super Mario Galaxy last night on a whim. There are Girl Scout events the next few weekends and a friend's mom got us tickets to see Frozen at the children's theater. I've messaged probably too many people about planning something together, and I booked a beach trip for the week after Memorial Day. I know on some level I'm trying to do as much fun stuff as possible while I can.
The cancer groups call it "making memories," but I tend to think about it as giving my kids experiences rather than memories. As an aside, I just need to state for the record that the core memory thing bothers me because who's to say what will actually be a "core memory" or even just a regular memory for me or my kids. I actually remember very little from my childhood trip to Disney, but I remember very vividly debating with my dad over the dinner table about whether there will ever be palm trees growing naturally in Montana. I doubt anyone could have predicted that as a "core memory."
Anyway, in the last few weeks, two local kids were all over my news feed. One got a strep infection in their brain and died. Another fell off a golf cart and died. None of us know how long we get. Because our kids are young, we think they will live longer than we will, and most of them will. But that's also a fantasy of what we think our future will look like and none of that is a given. In some fucked up way, I've been given a gift of time with my kid - time to truly recognize how special it is. And maybe we just spend it on the couch watching Gravity Falls together, but that's not time wasted if I am present and know how fleeting it all is.
To that end, I also told my Girl Scout co-leader that I am quitting after May. I had a dream about quitting and woke up thinking it was the right time to do it. If this recent round of radiation gives us at best 3 more months with no progression, then I cannot commit to being there and making scouts a good experience for anyone else's kid next year. So, it's time for me to stop and someone else can pick it up if they want or we can dissolve the troop and spend all the money at Great Wolf lodge or something. I feel good about it.
I am also letting go of any leadership positions at my job. My department chair is officially retiring in August or September, and I don't want the job. I am truly fine with whoever takes it on and feel good that it won't be me. Time is too precious to worry about class scheduling, assessments, and faculty evaluations. If the kids weren't on my health insurance, I might even feel good about quitting and doing something else with my time. But, we've already hit our deductible and our out of pocket max for the year, so I'm locked in through December.
To sum it all up - I am working on finding the balance. Any guilt I feel about not squeezing in enough fun between the appointments is just how I feel and not reality. All that matters is that my kids are supported and loved through all of this, and that isn't about doing the most all the time.
