My daughter had her first MRI today after starting ACT001. We've been worried because she's been vomiting more. The four of us went to Pigeon Forge over the weekend. It is halfway between home and Cincinnati, and we thought it would be fun to do something different before all of the appointments. We came prepared with safe foods and didn't go out to eat much. Yet, she still threw up almost every meal or just refused to eat certain things. It is really nerve-wracking because that is the first symptom she has whenever there is swelling or tumor progression. But, she also has to take so many pills each day. She takes 3 capsules of ACT001 twice a day (6 total), pepcid twice a day, dexamethasone in the morning, and zofran in the morning. Plus on the weekends, she take bactrim twice a day to prevent bacterial pneumonia due to her low white blood cell counts. The bactrim in particular triggers her gag reflex and makes her feel bad. So, is all that leading to more vomiting? Or is it something else? Everytime it happens, we clean up and file it away in our mental list of concerns.
As far as imaging goes, everything is stable in her brain and her spine. Some things are measuring slightly smaller, but they cautioned us that it could be just differences in the imaging rather than any real decrease. There is one new spot in her thalamus that shows contrast, but it is really small and they don't know if it is cancer or just changes due to everything else her brain has gone through. So we'll just watch it for the next scan. I think that is really as good as we could hope for.
From hearing from other parents, I know that this doesn't mean the cancer is magically going away. It doesn't mean that this medication is going to give us long-term results. I know people get stable scans and then in a few weeks, their kid has a significant decline. This cancer is diffuse and it doesn't always show up on imaging. So, I hold the results cautiously. It means that maybe the medication is helping. It means that at least things aren't obviously worse right now. It means we will continue on the trial for another month or hopefully two until the next scan. Don't get me wrong, hope is always there, but I have to temper it. I feel like I am always bracing myself for the next drop off, and I have to remind myself to focus on the present.
In the present, my daughter sometimes throws up her food. But, she is also going to school, wanting to join every club she possibly can, reading books, dancing, telling jokes, and being a kid. There is so much good around us, and I have to focus on that.
My daughter and husband will come back from Cincinnati tomorrow. We'll go to work and school. We'll take it all a day at a time until the next appointment. We'll continue living as much as we can while we can, and I guess that's all any of us can do.
September is Childhood Cancer Awareness Month. Last year I had a hard time with all of the memorial posts to the point where I felt like I was crying every single day. When I read them, I recognize myself in every parent whose kid has cancer. Every post could be our future.
This year, I am feeling a bit more able to handle it. After 16 months of our up-close-and-personal experience with cancer, we can stick our heads out of the sand a bit. In the past year, I've written letters to politicians (for whatever that is worth), donated money to all kinds of organizations, and set up a fundraiser in my daughter's name. My husband got a Discord streamer to raise money for brain cancer research. My daughter recently made a t-shirt and wanted the money to go to research. We are going to CureFest in DC where my daughter is planning to talk to Congressional representatives and has been asked to give a speech during their evening performances. But is it enough? More kids are going to be diagnosed, and any cure could be years and years away.
Also, there are so many organizations to support; it's hard to know which are the good ones. So many organizations want to give us things - things that my kid doesn't want that we end up donating somewhere else anyway. Some organizations don't seem to be that active, and some don't make it clear where your money is going. A few organizations have asked if we'd like to put my daughter's name on a t-shirt, and she has always asked why? And ultimately, she said no. She didn't see the point.
Maybe she doesn't want to be just a name for someone else's cause? Maybe she doesn't want her identity to be swallowed by cancer? I certainly don't want that for her.
It's hard to shake off the idea that there has to be some reason she has this disease, that I have to make this diagnosis mean something. One obvious way to do that is through fundraising and bringing awareness to the disease. What if I don't want to wear a damn ribbon or a fucking t-shirt?
There is this cultural expectation that we have to turn bad things into learning experiences or opportunities for growth and change. We have to become better people through our suffering. But, there isn't a bigger purpose in what is happening to us. It is just a tragedy.
My daughter is a person. She doesn't have to mean something more than that. While her illness affects me deeply, it is HER life that will be cut short. HER life. Not mine. I am not at the center of this story, and I hate this idea that something positive should come from it should she die. If I write a book and sell thousands of copies and raise millions of dollars for brain cancer research, it still doesn't make it ok. Nothing could come from her dying that would justify it.
We have been living with the anticipatory grief for 16 months. And yet, every day I think about how this isn't even the worst thing that could happen. There is an absurd amount of suffering in the world. Compared to the flooding in Nepal where entire families were just washed off the face of the earth, this suffering feels small in scale. I saw an interview with a man living in the UK who lost everyone in the flood - wife, kids, parents, cousins - and he has to keep going? It's incomprehensible. The grief is overwhelming.
Sometimes I think about how our entire planet is on fire. What is curing this one kind of cancer going to do?
And yet, people try to do the work anyway. When I feel too nihilistic, I try to come back to my core belief about what gives my life meaning. I think we should all work to lessen the suffering in the world in some way, even if it's a small way. Whether I find that meaning in cancer activism, in education, in parenting, whatever, I have to believe that I can improve my corner of the world at least a little bit.
When my grandmother died, the pastor at her funeral talked about how she wanted to volunteer with the after school program at her church, but she didn't think she had any skills that could be useful. She was from a small town in Southwest Virginia, and she didn't have a lot of formal education. So, she decided to give each kid a hug as they got off the bus. I had never heard that story before, but I haven't forgotten it since.
Last winter, I attended a support group via Zoom for parents whose kids have been diagnosed with DMG/DIPG. One of the good things about it was that I didn't have to explain the reality of our situation to anyone. Everyone already knew what we are dealing with.
My husband attended an in-person support group for parents whose children have cancer. There he met a parent who has a daughter around the same age as ours. Their daughter has gone through four years of treatment for medulloblastoma, a grade IV brain cancer. All brain cancer is awful, truly. But, also, what we wouldn't give to have the hope of five more years. And even in the shared experience of brain cancer, we still have to explain the grief that we feel.
So, a diagnosis-specific support group was really helpful for that reason. But, during the meetings, they asked questions that I didn't feel like I have a real answer for.
When they asked me to talk about who my kid is - truly is - I struggled to find the words and that made me feel like a bad parent. What I mean is I could tell them all about the details of her, but articulating the big picture of her is much harder to put into words, or maybe it's that words like "kind" and "caring" aren't capable of truly capturing a person. She loves drawing and movies; she loves bright colors and being silly. She thought it was funny that every other kid her age has a black backpack and hers is rainbow tie-dye. She tells jokes and memorizes animal facts. She likes making friends and surrounding herself with kind people, but she also doesn't care much about what others think of her. She is a hard worker and the type of person who gets all of her work done on Monday so she can spend the rest of the week doing what she wants. She worries about failing. She is steady and cautious. She is not afraid to tell people what she thinks, if things hurt, if she doesn't want to do something. She likes seeing cool birds in our yard, watching the sunsets with us, and remembers the lyrics to every song she's ever heard. She has a clear sense of justice and right and wrong. I suspect she thinks about more than she is willing to talk to us about.
Still though, as she's gotten older, she's less of an open book that she used to be. While I understand it, the slow closing off of herself is hard to accept because I just want to know everything about her. She still reaches to hold my hand in public. She sits with me on the porch just because. She laughs at my jokes and listens to my advice. But, she asks for privacy. She wants me to leave her room. She rolls her eyes at us. She offers up less information about the daily dramas of her friends. She's slowly pushing me out to make more room for herself I suppose. I don't feel hurt by those actions, but I feel sad about the changes. In particular, I'm sad that the things that used to make her so excited now get met with a shrug and a meh. What happened to that bouncy, rainbow child and when did she become so much more grounded?
But, last weekend my husband and I took the girls to see a Taylor Swift Tribute band, and they were both so excited and so into it. My youngest danced and hammed it up. My oldest emphatically sang all the lyrics to every single song. At one point, she yelled to me "This is great!" And it was. I maybe got a little teary eyed watching them sing together - both because it was so cute and I love their relationship and also from knowing they won't have this forever, cancer or not.
It's a weird place - watching childhood slip away into adolescence and also feeling like I won't get to see the adult she'd become. I'm grieving both ends of a person.
And maybe this is why I struggled to describe who my daughter truly is. How do you put into words someone you know so intimately, whose heartbeat you felt inside your own body, who is now building a cocoon around herself and changing a little every day? How do you describe someone who is becoming more herself and less knowable at the same time? And how do accept that you won't get to know the future versions of this person you love so much?
I often ask my kids' friends what they think of their teachers. They always tell me stuff that I don't hear from my own kids, and I like getting new intel like which teacher made a kid cry or which teacher they banter with at the bus stop. My kids' experience at school sometimes feels like a black box that I can't see inside. I just have to hope that they will tell me the important stuff.
I think that parents often want teachers to really see their kids beyond test scores or annoying behaviors - to appreciate their quirks, find out their interests, and see them as whole people. The other part of that is that, somehow, teachers have to let parents know that they actually see our kids, value them, and want to help them learn and grow. It is an impossible expectation to put on one person who is responsible for 20, 30, or even 40 students every year.
I have just been thinking about all of this since it is the beginning of the school year and we had another 504 meeting last week. It was fine. I was in a better headspace for it, my husband was there, and I just felt more supported than last year when everything was still super raw. Also, the school has a new principal, new guidance counselor, and new nurse, so I had to fill them in on a lot of what we went through last year, but I was mindful to mostly stick to where we are now and not get into the what ifs about the future. In general, I hope the new admin team and her new teachers see my daughter beyond her diagnosis but also recognize what the diagnosis has meant for her and all of us.
Having a kid with cancer amplifies this feeling of wanting my kid to be seen. My daughter spends so much time out of school in hospitals with doctors dealing with treatments and side effects that I hope school is a place she feels welcomed and valued. When kids get diagnosed with brain cancer, their abilities may change significantly. Things that used to come easy can be much harder. Parents want people to remember who their kids were before the diagnosis and also acknowledge how devastating the changes can be. Kids spend so much of their lives at schools, and for my daughter, I hope it is a place she can feel normal and known, and not a place where she feels invisible. This is a lot to put on a government institution, I know.
I think about this in my own life too, and I wonder whether the expectations I have for the people around me are unreasonable. I had a work friend tell me that they wanted to check in, but didn't want to do it too much. Honestly? I would rather someone check in than not. I want to be treated normally. I don't expect every conversation to be about cancer. I don't want my life to suck all the air out of the room. Everyone has shit.
I do want my experience to be acknowledged though. People should ask about my daughter, and I should be able to say she's doing ok, but throws up every day, and I'm worried about what that means. Or yeah, I signed my kid up for drum lessons and I'm so excited for her, but I'm worried she will lose her ability to hold a drumstick and that will be devastating. We should all be seen, and we shouldn't feel like we have to put a varnish over the bad stuff if we don't want to.
I want people to acknowledge that my daughter has a terminal diagnosis, because I never forget it. I want to feel like other people know her, will remember her, and that her life means something. I want people to treat us normally and also acknowledge that life is hard, for them, for me, for just about everyone I know in some way.
I'm going to steal another friends phrase and just say, "Life be life'n" and we should all have people around us that can deal with it.
I had a thought yesterday that I was like the "Irrepressible Thoughts of Death" Barbie in the Barbie movie asking everyone if they've ever thought about dying in the middle of a dance party.
I've probably thought about death everyday since we found out about my daughter's brain tumor.
Sure, before then, I had passing thoughts about dying or the afterlife and grieved grandparents passing, but in general, death felt far removed from my future and really abstract as a concept. I know that makes past me incredibly lucky - to have been able to shove all of that to the side for so long.
But I wonder if thinking about it every day makes me a little nuts or if this is just normal given my circumstances. I still remember when I told someone I was reading a lot of books about death and they looked at me like I was so weird and that I should not admit that to anyone.
The truth is I don't just think about my oldest dying, though those thoughts are obviously there. I also think about my youngest dying or my husband dying. What would that be like? What would we do after? In addition to all the books about dying, I also started watching 5 Star Weekend with Jennifer Garner on Peacock, and clips from Dying for Sex with Michelle Williams have come up in my feed (look up the process of dying scene if you are interested). I've read accounts of people's near death experiences on Reddit, and I've been mining religious texts for different perspectives on death.
I'm not scared of the dying process. I'm not scared of being dead. I'm scared of survivorship. Of losing people I love and having stand in the wreckage of that. The emotional pain of that scares me more than most physical pain.
I follow a cancer mom online whose daughter is in remission from Ewing's Sarcoma, and she recently lost her son, her other child. The one she probably didn't worry about as much. It is entirely possible all of our children will die before us. It is entirely possible that my other child will get cancer or some other disease or will die in a random accident. It happens. In order to not be completely overwhelmed with anxiety, we push those thoughts away and continue on. I guess I don't really want to avoid those thoughts though. I'd rather figure out how to integrate them and how to parent better or live better alongside them.
It is back to school season, and both of my kids started this week. My oldest is in 5th grade and my youngest started Kindergarten. I've seen posts from other parents about being sad and their "mama hearts" hurting or whatever. Maybe it is just my personality or maybe it's having a kid with terminal cancer, but I don't feel one ounce of sadness or heartache about my kids starting school. I don't feel anything but excitement that they get to reach another milestone. I have now seen too many kids get diagnosed with DIPG, leukemia, or neuroblastoma before the age of 5 who don't get to go to Kindergarten. I just can't feel sad about any opportunity my kids get to have. Growing up is such a freaking gift.
A Song My Kid Belted Out in the Car
Maesic & Marshall Jefferson, "Life Is Simple (Move Your Body)"
I haven't written in a while, for a few reasons. Primarily, we've been busy the last few weeks. We went to the lake with friends and had a great time swimming and tubing. Cool, rainy weather be damned. We went back-to-school shopping, did birthday things for my husband, and caught a Lindsey Stirling concert. We had cousin-friends visiting and went to Carowinds for the day and the pool for another. In addition to all of that, it is also just really hard to find time when being a stay-at-home mom for the summer. I've been trying to soak up as much kid time as possible. While I'm looking forward to our regular routines and I'm so excited about my youngest starting kindergarten, I don't want the freedom of our days to end. Grabbing ice cream just because, letting the kids stay up until 10 pm, staying in our PJs all day if we want. It's all pretty sweet.
All the activity also lets me shove cancer to the back of my mind most of the time. We started trial medications mid-July, and luckily, my daughter hasn't had any side-effects yet. She actually seems to feel pretty great. However, she is still on steroids, which may be keeping tumor symptoms at bay. We just started weaning down today. She has been on 2 mg since June, and we are going down to 1 mg for three weeks and then reducing it further if everything is ok. I know many kids can't come off of steroids once they start. My daughter is on a relatively low dose, so I'm hoping we will be able to continue tapering. I take her back out to Cincinnati next Monday for routine blood work and a check-in. I'm hoping everything will look good and it will be a quick trip. School starts next Wednesday, and I really want to be back for my youngest's first day.
Yesterday, I was talking to my husband about schedules for the next few weeks. We started talking about how my youngest's interests/wants/needs were shoved to the side a bit last year. We have been so consumed with appointments, clinical trials, surgeries, and recoveries, that we haven't had much space for anything else. We are trying to make sure we invest in her a bit more this year. With my summer free time, I started my youngest in swim lessons. She absolutely loves being in the water and has come so far in such a short amount of time. I also signed her up for a dance class that starts in September. She was very adamant that she didn't want to do gymnastics, soccer, or anything else. Just dance. So, dance it is.
For extracurricular activities, my oldest decided that she wants to learn the drums, so I also signed her up for lessons. It wasn't without some hesitancy because of what I know happens to coordination and hand-strength when the disease progresses, but also, fuck it. It's only money and a slightly awkward conversation with the drum instructor. Who knows if or when things might get worse. We only have the present, so Girl Scouts are out, drums are in.
My husband and I are trying to honor our kids' interests, encourage them to grow into well-rounded people, and are doing our best to get them there. But, in all the stress of regular daily life, not to mention all the cancer treatments, how do we find the time for ourselves as well? If we had the time for ourselves, and we could get rid of the guilt we feel for not always being with our kids, what would we even do? What are hobbies anyway? I started following this Facebook page called "crochetcrazyhelen" who makes art with sticks and flowers and other found objects. It's soothing in a Mr. Rogers way. I've been really feeling the urge to make stuff, but I don't know what. So, if you see me in the woods looking crazy and gathering sticks, I'm just working on my new fairy house hobby.
I am currently at Cincinnati Children's Hospital, sitting in a recliner with SpongeBob SquarePants blaring on the TV above. We officially started the clinical trial today and have to spend the night for monitoring due to their standard protocols for clinical trials. My daughter had her first dose of ACT001, an oral chemo and inhibitor targeting different pathways that lead to the growth of DMGs. One major side effect is nausea, but so far she has tolerated the first dose well.
Because we aren't sure what side effects my daughter will experience, we (or I really) have been trying to cram in as much fun as possible while she is feeling good. She went to 3 different camps in June. On July 4th, we went bowling and played at the arcade before setting off fireworks in the driveway. My husband, oldest daughter, and I drove to Cincinnati on July 6, and between the clinic visit and her MRI, we went to a Reds game and to the zoo, both of which were a lot of fun.
Then, after my husband flew home and we finished the MRI, my daughter and I had 4 free days before the next clinic appointment. It's about a 7 hour drive back to North Carolina, and we didn't want to do that. We also didn't want to stay in a hotel eating take-out, so we decided to drive 5 1/2 hours up to Holland, Michigan to visit our friends and stay in their cottage on Lake Michigan. We hung out on the beach, played games, rode dune schooners, and stayed up way too late watching the sun set. It was truly the best way to spend the weekend, and I'm so glad we made the drive.
Before cancer, we might have done less or been more conservative with our money. But, one effect of cancer is that we have become a little looser. Want overpriced souvenirs from the stadium? Treat yourself! Want a stuffed panda from the zoo shop? Treat yourself! I suppose part of the psychology behind that is that it is our attempt to capture as much joy as we can while we can.
In my last post, I mentioned that I had been reading No Mud, No Lotus by Thich Nhat Hanh and quoted a morning mantra. There are many more mantras that a monk would have to memorize to practice mindfulness throughout the day. I told my daughter that there is even a mantra to recite when using the bathroom. She thought that finding joy in peeing and pooping was funny, and we've started just saying "joy!" to each other whenever something brings us joy. Farting - joy! Sunset - joy! Beating your mom at Uno - joy! It's just a good reminder of the big and little things that we can take for granted every day. Even all the bathroom jokes are a reminder that we have bodies that function and that is something to be grateful for.
I am continually grateful for all of our friends and family who annoy us with check ins, force us to make plans, make offers to help, and just do normal things with us. While we haven't experienced a lot of cancer ghosting, there has been some. I try not to think about it too much. There are simply too many other things to worry about, and I don't want to allow myself to dwell on it. So, I appreciate all the stupid memes and check in texts a lot, even if it feels like doing a lot of nothing.
