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.
One of my favorite coffee cups was a Secret Santa gift from the last Girl Scout volunteer meeting I went to. It is dark blue with white and green cursive that says "Live in the Moment." I use it as a morning reminder of what is important that day.
A mantra that stood out to me in the current Tich Nhat Hanh book I've been reading, No Mud, No Lotus: The Art of Transforming Suffering, is:
Waking up this morning I smile.
I have twenty-four hours to live.
I vow to live them deeply and learn to look at the beings around me with the eyes of compassion.
I've tried to commit this to memory and say it to myself in the morning.
I've seen other parents say that they wished they had spent less time grieving their child while they were still alive. I think on some level, it is impossible to not feel anticipatory grief. So instead, I am working on acknowledging those feelings when they come up and then shifting my mindset to something else.
One morning this past week, my youngest slipped into bed as she often does for cuddles. My oldest was at camp and it's was hard to not think that this might be what it's like when she's no longer here and we are just a family of three. I feel so much love for my youngest and yet I couldn't help crying in that moment. I felt it for a bit, and then reminded myself that oldest is not dead. She's at camp, and I'm so happy that she got to go. I will see her tomorrow and get to hear all about the fun she had.
The feelings came up again later that day when I was in the car. I felt sad, and then looked at my youngest in the back, looked at the sky, the grass, tried to feel grateful for the day, and let feelings pass.
The reframing is a mental practice I'm trying. I am also working to shift my focus more generally. If we only notice the suffering, that is what we will feel. This blog allows me to release all of the shit feelings I have and to clear my brain so that I am not consumed by them all the time. But as I've written before, there are a lot of good moments too. And it's important to focus on those.
Yesterday, because it was slated to be 100 degrees for most of the day, I got up early, made coffee, and sat on the front porch. I wanted to enjoy outside before it became oppressive. My oldest joined me with a cup of orange juice and some waffles. We laughed at the mockingbird perched on the top branch of our tree making car alarm noises. It was a nice way to start the day. And despite whatever else I felt that day, it started on a good note.
Mornings like this are also possible because the low dose of steroids has given us back our kid. She is waking up early like she used to. She comes into bed and reads with me. The other day, she brought me her chrome book so I could look at her latest story idea that she wants to turn into a book. She has been doing things and not just laying in bed looking at her iPad. I love that.
I am still afraid of what this new treatment will do to her and what it will take from us. But life exists in the now and not in the future or the past, so for now, I am on my porch with my coffee listening to birds and trying to be thankful for the day.
I took last week off from writing. I've been busy driving kids to and from camp, doing chores around the house, and coordinating with nurses, social workers, and friends to figure out what the next few weeks are going to look like.
Tomorrow, we will find out officially if there is a spot on the trial for my daughter. We had to wait 3 months after radiation to enroll, and that date is tomorrow. After they hold a spot for her, we have two weeks to sign up and begin. We will be driving to Cincinnati July 6 and then meeting with the team July 7 to go over the trial details and sign all the forms to enroll her. She'll have an ECHO and an EKG after that. On July 9, they'll do an MRI of her brain and spine to get a baseline before treatment. We've decided to try having her do them awake now that she is 10. The brain MRI is about 45 minutes and the spine is about an hour. Doing them awake will make the whole process quicker and easier to schedule. As long as she can wiggle between and listen to music or watch a movie, I think she will handle it fine. Her least favorite part is getting the IV inserted and doing the MRIs together will mean just one poke, which she would prefer. After that, we have several days to fill before we have to be back on July 14. We have some tentative plans, but we'll just have to see how my daughter is feeling.
In order for all this to come together, I have had to coordinate with the nurse at Cincinnati about the schedule and details, talk to their social worker and our local social worker, fill out forms to stay at the Ronald McDonald house (background check required), find out there's not room this time, find somewhere else to stay that is close to the hospital and affordable, and apply to be part of some local foundations that can connect us with other families and events. I've had a nurse and a social worker from my insurance call me (what they do, I'm not entirely sure) and we have to make sure we have enough of her medications to last for any travel. This means important phone calls coming in while I'm in the grocery store or the car and keeping track of so many emails I'm sure things get lost in my inbox.
I feel pretty competent at getting it all together, but I also recognize that it is a lot of work. I think about how much more difficult this would be without the resources we have. The most basic being that we speak English. I also have a laptop and the internet so I can research and fill out forms easily. We've been able to save money in the last year, so traveling doesn't create a financial hardship for us right now. We also have friends and family who have connections and resources they've been able to offer us that have really helped. For this trial, we will have to travel to Cincinnati every 28 days as long as the medication is working. That is a 7 hour drive or a $400-per-ticket plane flight. If we didn't have a reliable vehicle or money for flights or jobs that would allow us to take time off, this would be inaccessible to us, even with support from non-profits. For some, even just finding and signing up for support from a non-profit is challenging.
For me and the other pediatric cancer parents I've met, we do all this and more because not doing it, not doing something, feels like giving our kids a death sentence. And, honestly, I don't have a lot of hope that this treatment will work, but even more I dread the moment when we are told that there are no more treatments available for us to try.
I know doctors go through so much training - med school, internships, residency - but I still wonder about the soft skills training they get. While some doctors have been a little oblivious about the emotional effects of what they are telling us, some have been very no-nonsense, but in a way that was needed. For example, in the PICU we were asking about a swallow study, something that had come up a few times when my daughter had her surgery in March. The doctor plainly asked what we would do with that information. Good point, I don't know what we would do with that information, so we didn't do it. Instead, we came home.
Our neuro-oncologist is a very thoughtful, kind man, who likes to talk and makes sure he always asks my daughter about her hobbies and books she is reading. When he has to give us hard information, he does so in a language that our daughter wouldn't necessarily pick up on if she is in the room. He will email us detailed information about studies and treatments. He considers the timing of scans and appointments to minimize visits and make sure we are getting the best information. At our virtual visit last Wednesday, we talked about different clinical trials and which we thought would be the best option to pursue. He explained that it can be difficult to get accepted to a trial and that we should do that while we can. It can take time waiting for wash-out periods and other things just prolongs treatment. It is much easier to stop a trial and try something local than to do it the other way. He also recommend a trial because it is a way for us to consult with people that know more than he does about research and treatments specifically for DMG.
Even though there is nothing available to us right now that looks like an amazing option, he emphasized that just because something hasn't worked well for others, it doesn't mean it wouldn't work for our daughter. Some people have had great responses to treatments unexpectedly and sometimes there isn't a clear reason why. I really appreciate his perspective and that he is able to allow us to have hope still.
My husband and I have decided that we don't want to do a trial that is invasive or will obviously cause more trauma, especially without a high probability that it will be effective. For example, there is a vaccine trial in Minnesota that was willing to consider our daughter even though she has LMD. However, it would require repeated shots in her neck, and we would need to be in Minneapolis for probably 3 weeks and then go back every month after that for more shots. It is also a Phase I study, which is testing dosing and safety. I just wasn't convinced that it was worth it.
Another study we looked into for a drug called CBL0137 is now being paused or stopped at some locations because kids were suffering from internal and external burns from treatment. I feel so badly for the parents who made the decision to enroll hoping for positive results only to have the drug do nothing but cause pain.
We don't make the decision to pursue a trial lightly, and we are trying to preserve our daughter's quality of life as much as possible. We don't want to travel extremely far from home or be away for long periods of time. So, we are going to try to be accepted into the ACT001 trial, a Phase II drug trial, either in Cincinnati or Columbus, OH. I got an email about a MyChart account being set up at Cincinnati, so that is probably where we will end up. The earliest we could enroll is July 5, which isn't that far away.
Until then, we have a full brain/spine MRI on Wednesday, and then we are probably going to Williamsburg to visit family on Friday. We weren't sure if we would go, but my daughter has been feeling so much better, and signs of herself are returning. She has been getting up early, been in a better mood, and is eating a healthy amount again (thanks steroids!). She has energy and wants to go do normal kid things and not just lay in bed. I am so thankful for that, and I hope it continues.
I have been reading this book called Living Buddha, Living Christ by Thich Nhat Hanh. It talks about the similarities between Buddhism and Christianity, but since it is written by a Buddhist monk, it has a different perspective on some Christian practices. It's a short book, but I've mostly been reading little bits before bed, so it has taken me awhile to get through. One part that I read recently that stuck with me is how our suffering is caused by our delusion of the true nature of reality. That is, "Regarding something that is impermanent as permanent...we suffer." He also writes, "If we cling to our idea of hope in the future, we might not notice the peace and joy that are available in the present moment." With that in mind, we just have to continue to do as much as we can with the time we have - stay present and thankful and know how fleeting it all is.
We came home from the beach on a Sunday. Monday immediately felt lighter. Everyone was in a good mood, my oldest was eating better and had more energy. On Tuesday she had a pediatrician appointment and then we went to the library and got smoothies. Wednesday my oldest had a friend over and we went to see The Sheep Detectives, gorging ourselves on candy and popcorn. Thursday we planned to just chill and catch up on chores. It was a good week. Things change so fast.
Thursday afternoon, my daughter started complaining about her legs hurting a bit, just the upper glutes, and she started walking funny. Two hours later, she complained that her eyes were hurting when she opened them, and she had a headache just above her eyebrows. I texted my husband who was out with friends to be prepared to possibly take her to the ER. I got my daughter into bed, and I put a cool washcloth over her eyes. She fell asleep, and I packed an ER bag just in case.
The next morning, I had to help my Girl Scout co-leader deliver toys we had collected to the children's hospital. Originally, I was going to take both kids with me so they could be part of it. But, my oldest still wasn't feeling up to it. Her headache was gone, but her legs were still hurting. While we were gone, my husband called the oncology office, and they recommended taking her in to the ER at the same children's hospital where I had just dropped off toys. My husband took her in and I tried not to cry in the car on the way home.
I texted my mom, who drove the 3 hours down from VA to watch my youngest, and I met my husband and daughter in the ER right after the MRI. The scan showed a brain bleed, new growth of her cerebellar tumor, and increased leptomeningeal disease (LMD). Because they only scanned her head, we have to wait until next week to see what is happening in her spine. However, the symptoms she is experiencing could be from LMD. LMD is when cancer spreads to the leptomeninges, the membrane that covers the brain and spine. Cancer there causes a build up of pressure, vision changes, leg and back pain, and seizures. The doctor also said the headaches could be due to the blood in her ventricle blocking fluid flow. I spent the night with her in the PICU. In the morning, neurosurgery decided there was no intervention needed at this point, so we came home with some steroids and that's it.
We have a virtual visit tomorrow afternoon with her oncologist to discuss clinical trials, but I also suspect it is to have hard conversations about the future without my daughter in the room. I'm not sure any of the trials available to us are worth the travel, the side effects, or being a pin cushion for science, especially if they are phase I trials just testing for safety.
The last few days, I've also been feeling like my youngest is getting lost in the mix. I optimistically took her out of daycare for the summer, but it's making everything a bit harder. She wants to swim and play and be a kid, and my oldest gets really tired and generally wants to read or nap. If my youngest were going to daycare everyday, I know she would feel left out of imagined fun she thinks we'd be having without her. Last night after a lot of 5-year old emotions, she told me she was sad that her sister wasn't playing with her anymore and that her sister just wants to be in bed chilling. I had to explain that her sister isn't just chilling in bed, that she is actually really tired. My youngest asked if it was from the radiation. I said yes.
Even though my youngest is only 5 and hasn't even started kindergarten yet, she is picking up on a lot of stuff. She recently watched a movie where the main character's brother died of cancer. Surprise cancer plot lines have shown up in a lot of books and movies recently. Maybe it has always been there, and I'm just more aware of it now. Anyway, because of that, she is worried that her sister is going to die. She asked me if her sister is going to get better, and I had to tell her that I don't know.
All of this has me reaching for some kind of life philosophy to make me feel better. I saw a video with a biologist talking about how many factors have to go right to create a healthy baby and for that baby to grow and become a healthy adult. It's a miracle that any of us are here. There is no great system of fairness or unfairness in nature. Things just happen, and sometimes you don't have the ability to change it. So, you have to learn how to live within it and be thankful for the good fortune of being alive here and now.
We were at the beach last week. I rented a 3 bedroom condo at a resort on the beach with indoor and outdoor pools. I needed something to look forward to at the end of the semester. I also invited my parents. They have helped out with child care and driving to radiation appointments, so I wanted them to be able to spend some fun time with my kids.
On the drive down though, my husband came down with a fever that turned out to be strep. I had to take him to Minute Clinic for antibiotics on our 14th wedding anniversary. He spent the first two vacation days in bed.
My oldest was is a good mood the day we arrived, and we went for a walk around the resort and on the beach. The next day, she didn't want to leave the condo. This pattern repeated itself for the rest of the week - one day was fine, the next was not. Her eating was all over the place, and she probably felt tired and worn out. I managed to get her on the beach late one afternoon where we sat and read with our feet in the waves. It was nice. She interrupted my reading every minute with a new animal fact.
Another day, we convinced her to get in the lazy river, which she enjoyed, but that only lasted for a little while before she wanted to go back up to the room. She did not care about going to the aquarium. She did not care about going out to dinner. It was difficult not to poke and prod her too much - to let her do what she wanted, but encourage her to get out. I'm not sure exactly what the deal was. It could be cancer affecting her energy levels in ways that she can't articulate. It could be just generally being tired of us or her little sister. I don't know.
My youngest was happy doing everything. She played in the ocean for as long as I would let her. She went down the waterslides a million times. She loved the pirate dinner we went to and was generally as happy as a 5 year old can be. Spending time with just her, getting wrapped up in her delight, made me feel a little guilty, like I was replacing the bad child with the good one.
I found myself wavering between happy and sad the whole trip. I just felt off, like it was my job to make sure everyone was taken care of and enjoying themselves, probably to the detriment of what I wanted to spend my time doing. But that is just being a mom on vacation. You can't read or sleep on the beach when you have to make sure no one drowns.
My parents were also there. Being at the beach with them was good. They took my oldest out shopping and stayed in when the kids didn't want to go anywhere; they paid for things they didn't have to. But when they left, I felt more tired and sad. Throughout this cancer diagnosis, my parents have been great. My mom specifically, to the point where she will definitely try to make sure everyone else is taken care of to her own detriment. They've offered real material help like money, child care, all of that. They sold their RV and bought a second house down the street to be nearby if we needed. But, they don't want to know the details of her disease or her health, really. Or they don't want to talk about it with me.
From my perspective my parents seem to avoid being alone with me, avoid calling on the phone to talk me rather than my kids, and don't ask how I am, really. My dad is the worst culprit by far. I actually have a whole draft started about my thoughts on men avoiding grief, but I haven't fleshed it out yet. Anyway, I get that she's their grandchild, and they are struggling a lot with it all. But she is my daughter, and I don't have the option to bury my head in the sand. When they left, I crashed out on the balcony alone, and I'll probably never actually talk to them about all of this. Families are weird and relational patterns get ingrained in ways that feel impossible to break out of.
There were definitely times this week that I wished I could be there alone and just be.
In one of the cancer parent support groups I attended, they asked what we are doing to take care of ourselves. In a lot of ways, I have put my own stuff to the side. I don't for one second regret any of those decisions. I say that just because it is the truth. As a parent caregiver, my own life goals, health, and wants have become secondary. But, a year into it, I know that I have to get myself together in order to continue being a good parent and caretaker. You can only put yourself off for so long until the wheels start to come off. Stress in particular can wreak havoc. So, taking care of myself and finding a healthier routine has been a goal of mine this spring as I'm trying to get out of survival mode after my daughter's surgery and radiation 2.0.
I am a creature of habit. I thrive on a routine that gets me out in the world. In the various towns I've lived in, I've gone to the same businesses frequently enough to become a known regular. When I lived in San Francisco, I went to the same coffee shop almost every morning, and they would just know my bagel order when I walked in. Currently, the librarians at my local library branch greet us by name and know how to pronounce and spell our complicated last name. Sure, there are days when I want to bed rot like anyone else, but I can't do that for long. After I had my oldest, I started going to classes at the Y. Any class, it didn't matter, just to be out and feel connected to something. I even regularly went to this older adult light weight lifting class just because it fit into my schedule despite being the youngest one there by 3 decades. Even if these people aren't my friends, it is good for my mental health to just be around people and see familiar faces.
To get my physical self into shape, I've had appointments with my PCP and my dentist. I have an appointment in a month to get checked for skin cancer, something I've been putting off for years. I've been trying to get back into taking classes at the Y regularly, and I even started going on mental health walks. After dropping my kids off at school, I drive over to the park. There is a walking trail along the Catawba River that connects the park to City Hall. It's usually around 8 AM and still cool enough to be enjoyable. At first, I was a little worried about being on the trail mostly alone, but as I've gone more frequently, I see the same people there, which puts me at ease. My favorite is this older man who walks with a cane and carries a bag of nuts and seeds. He scatters them along the route and by the time I pass by, there are squirrels, birds, and bunnies everywhere. It makes me feel like I'm a Disney Princess and all my animal friends are coming out to say hello.
Now that my kids are out of school for the summer, I have to figure out a new routine to keep it all together. I don't think my kids will want to walk at the park in the morning, at least not without complaining. I may be able to convince the youngest to go to childwatch at the gym in the morning, but I'll have to find a class that works with taking my oldest to summer camp.
And, I don't even want to think about the appointments that may be in our future. That part is so unknown to me that, for the moment, I just have to live as if everything will be fine and try to make plans like a normal person. Maybe if I can build habits into my life now, they will help carry me through stress in the future, even just a little bit.
Today though it is 1:30 PM, I am still in my pajamas in my bed with both of my kids, and we are all on our screens. Rest is healthy too.
A Song to Listen to On A Stupid Walk for Your Stupid Mental Health
Back in February, I wrote about how devastating it was for my daughter to have to give up her spot in the play because of her surgery. At the time, she was upset that she put in so much work and wouldn't be able to do the fun part of actually performing it for real. She went back to school the week before their performance and went to their dress rehearsal during class. She said it was good, but she didn't want to go to any of the public performances over the weekend. I didn't press it.
I know parents will talk about how great and smart and wonderful their kid is at things. But, truly, my daughter is really good at performing. When she was in Kindergarten, her grade did an end of the year performance for parents. The kids were all shuffling out to "High Hopes" or something similar. My husband and I were craning to see when she was going to come out. Finally, the front row kids come out, and we saw our kid, the only one bopping around and dancing like a maniac. She took her spot and tried to get the kid next to her to dance too. He finally gave in and danced with her, but she was definitely THAT kid, the one being a nut while everyone else was so scared and serious.
When she was in the school's play last year, she was an Oompa Loompa and was so excited that she got to be something silly. She had a solo line in the first song and popped out to convince Charlie and Grandpa Joe to drink fizzy lifting juice. When the Oompa Loompas would come out to do their song and dance, I could always pick her out because she was the only one being super expressive. I asked her about it afterwards, and she said that her theater teacher told them to "always be acting," so she was just dramatically responding to what was happening on stage. Watching her, it felt like this was something for her.
Sports have never really been her thing. She did soccer some, but didn't really love it. She also tried gymnastics through second grade, but realized it wasn't for her when she couldn't do things the other girls could. One year, her gymnastics class had a performance for parents. They were supposed to memorize a floor routine, and the kids had to perform different skills at each station. She could not remember what she was supposed to do at the stations and would try to do a roll or a cartwheel, but would end up just flopping around on the floor. Each time, she would get up smiling and put her arms up in the finishing salute like she was amazing. I was so embarrassed for her, especially when the instructor gave out special invitations to the other girls to be on the team, but skipped us. My daughter didn't notice or care.
She just isn't concerned about what others think and likes to make people laugh. I actually don't think she developed the capacity to be embarrassed until she got cancer and became the center of attention unwillingly. Some of the things adults have done embarrassed her. For example, when she had to drop out of the play this year, her principal sent me a video of all the other kids singing "Jolly Holiday" but they replaced Mary (Poppins) with her name. She was so embarrassed and does not want to be the center of attention because of her illness.
When all of her hair started falling out, she had feelings about it. She complained about looking weird and started wearing a hat pretty much all the time. It seemed like she was losing her confidence a bit. She is totally bald now, and we've been trying to build her up and tell her it doesn't matter. I found myself repeating something that my own mom told me once: Your real friends will like you no matter what you look like and who cares what people who aren't your friends think.
We took some baby steps too. I told her she could try going for a walk or going to the store without a hat on and see how she felt. So she did, and last week, she went to school without a hat for the first time. I didn't know she did that until I picked her up from afterschool. I was so surprised, and she just sort of shrugged her shoulders like whatever. The daycare owner told her how great she looked. Her third grade teacher texted me to say how my daughter was just beaming at school. It felt like getting her back to herself, and I am really proud of her for that.
Yesterday, her theater arts class had an in-class talent show. They had gotten into groups a couple of weeks ago and worked together to come up with a performance. My daughter made her group mates learn "What Does the Fox Say." They sang it and came up with dance moves. I so wish I could have gotten a video of it. Her theater teacher sent me a message yesterday giving her a shout-out. Her teacher said, "While other students were super nervous to perform in front of others, she jumped right up and was ready to be silly. The whole class was singing by the end. I love her humor and how she shares it with others!"
Kids come into the world with so much zest and individuality and the world tries so hard to stomp it out. I hope both my kids keep theirs for as long as they are here.
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.
In the hospital before surgery and during recovery, my daughter kept telling the nurses that she knows how things work, she's done all this before. At the pre-surgical appointment, when the doctor was talking about where her incision was going to be, she showed him all of her other scars.
Even though it's all a familiar process - surgery, recovery, radiation, clinic appointments - things seem to get harder the more we do them.
My daughter had to get an MRI last week before starting radiation. A brain scan usually only takes 30 minutes, so she does them awake. It's much quicker when there is no anesthesia. However, that means my daughter has to get an IV while she is awake. When I told her she had to get an IV, she started crying. I hugged her. Told her it sucks and isn't fair that she has to go through this. I got out her iPad and we started listening to music. She wanted to listen to 1989. So, we sang and waited for the imaging specialist to be done with the patient before us and then come over to put in the IV. She held her arm still, gripped my hand with the other, squeezed her eyes shut, and said "ow ow ow" until it was over. As he put the tape over her arm, "Shake it Off" was playing.
One of the first times they took blood at the oncology clinic, the nurse couldn't find a vein. They called in another nurse, who tried again, and caused blood to spurt down her arm. Finally a third nurse was able to do it. Through it all, my daughter practiced breathing, listened to music, and gripped my hand. Despite this experience, she does ok with blood draws. She doesn't like them, but they are usually quick. Sometimes I talk about what we are going to do that weekend to distract her. Other times she just wants to get it over with as fast as possible. I know grown men who faint when they have to get blood drawn. Even though she pushes through, the little traumas, the IVs, the gross medicines compound and things that were easy before get harder.
We start radiation again this afternoon. If I go by what the doctors say, it is going to be worse this time. Instead of focal radiation, they are doing the entire brain and spine. Since coming home from the hospital, my daughter has had these stickers with green crosses on her ribcage. We were told not to take them off or wash off the marks because they need them to be able to line up the radiation machines. She got a new radiation mask made - one that covers her shoulders. I hate that beating this disease back requires poisoning and maiming her body like this.
I really felt like that after surgery, and questioned whether the pain was worth it. When the surgery was over and we were waiting to go see our daughter, the neurosurgeon met with us in a private family room. Sometimes the doctors will just come into the waiting room and meet with parents there. We were taken to a private room, so we knew it wasn't going to be good news.
The doctor told us they were only able to get about 60-70% of the tumor. The rest was spread out into healthy brain and intertwined with her cranial nerves. The doctor described it like chewing gum stuck in your hair. While he was talking, I kept staring at his cowboy boots. What kind of brain surgeon wears cowboy boots while literally holding people's lives in his hands? What is the psychology behind that? He told us that the hardest thing for a surgeon to do is stop operating.
I bring that up knowing that he is a good surgeon. There are YouTube videos of him being interviewed by local news and patients talking about how he saved their lives. I am glad he worked to conserve my daughter's brain function and her mobility. I am glad that she is now back at school, walking and talking like normal. But at the time, I also wondered why we did surgery in the first place. Why not just go straight for radiation and not put her through the pain of this. I know now that radiation can cause more inflammation in the brain. Radiation can be more dangerous when there is already hydrocephalus, leading to seizures or neurological complications. Many families wish their kid's tumor was operable. As we are finding out, removing it doesn't mean getting rid of the disease.
I keep thinking about the part of the tumor that is left in her head. In my imagination, it is like Venom from Spider Man - this black, crackling mass, spreading out and taking over its host body. I hope that radiation will kill the rest of it. That it will slow the effects of LMD. That she will continue to have a good quality of life. However, for the first time, the clinical notes clearly say: "she has progressive, metastatic disease and this portends a poor prognosis. There are no curative options."
Another DMG/DIPG parent said that they know the statistics, the overall survival with this disease, but they don't know the future for their child. And I keep coming back to that. I know, but I don't know.
The first joke my daughter ever learned was "Why did the girl bring toilet paper to the party? Because she was a party pooper!" She was 3 or 4 and she told it to everyone, multiple times.
Last summer when my daughter did radiation the first time, the child life specialist found out that she liked jokes and brought her a special notebook where she could write her jokes along with a joke book. My daughter's third grade teacher apparently taught her how to make up jokes, and she does it all the time. At every appointment, she asks everyone if they want to hear a joke. What follows is a mix of puns, dad jokes, and stupid riddles. I think she likes getting a laugh out of people.
Here are 2 jokes my daughter has wrote down in her special joke book last summer. I think she came up with these herself:
What did one grain of wheat say to the other on the Ferris wheel? This ride is toast-ally awesome.
What did one cheese puff say to a super hero cheese puff? You're very powderful!
(I'll have to get her to write down some more.)
Before her surgery, I made a Facebook post requesting jokes and everyone and their mom decided to send us joke books. I don't have the heart to tell anyone just how many we got - but it's more kid joke books than a normal person should have.
My favorite was all the individual jokes and videos people sent us. We went through them all one night before surgery when we were feeling anxious. I told her more after surgery when she would have moments of alertness. It helped get a laugh amid the pain she was feeling.
When the neurosurgeon came by for a final check before releasing us from the hospital, he got two jokes. I hope all the hospital staff went home thinking about that kid who told all the jokes.
Last week one of my students told me they were going to be traveling to Florida for medical appointments at the Mayo Clinic. I don't know what it is for, but traveling for medical testing is never great. I told her a little about our traveling and then offered to share some of my daughter's jokes. It felt good to pass them along to someone else.
People always ask if they can do anything for us, and while we don't need any material things, jokes, memes, and funny videos are always appreciated. Laughter is the best rebellion.
I've written about prayer and religion here before. It's kind of inescapable when your kid has cancer and you live in a small town. I have so many messages from people praying for her and us. Multiple coworkers have told me that they have their churches praying for us. Teachers at my daughter's school had a prayer group the night before her surgery and wanted to know the exact time her surgery was so they could say a prayer then too. Family members, internet strangers, people at the hospital. I just say thank you.
My own feelings about it are complicated. I want to believe that there are unknowable things about death, souls, the universe. I like the idea of loved ones who've passed sending signs. But, I have a hard time with the proscriptive rules of Christianity, the saved versus not saved dynamic, that saying these magic words will save your soul, and all the racism and sexism in the church's past and present. The idea that the culture or religion you are born into would prevent you from a heavenly eternity never made sense to me. The idea of God in my mind seems bigger than all of these human rules, has always seemed bigger than that to me. A friend of mine said maybe it's not important whether we believe that Jesus was God or not. We can instead focus on his message of loving others and taking care of the poor, and it made me feel better coming from someone who seemed much more religious than me. So, all that is to say, if praying helps others feel like they are doing something, that's great I guess. None of us can have too many good words for us out in the universe, but I also don't feel any need to ask for prayers.
During my daughter's surgery though, I had so much anxiety that I started reading some Bible verses. Surely if this many people are finding comfort in prayer and the Bible, then maybe it will work for me. I googled things like "Bible verses to help with anxiety" or "Bible verses to help with grief." I know that's not the best method, but it's what I had to work with at the time. I don't really find comfort in random Bible verses taken out of context though, so then I bought a devotional e-book specifically about getting through hard times. It didn't help.
The one book in the Bible that I did read a few times while I was in the waiting room was Philippians. It is one of the prison epistles written by Paul when he was under house arrest in Rome, bound in chains with little food. The letter is to a church that he helped found. In chapter 4, verses 6-7, Paul writes:
"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."
Then later in verses 11-13:
"I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength."
I suppose this one stuck with me because of the idea that even in suffering, there can still be peace. And I think maybe that is something I have been trying to find or at least hope for at the end of all this. That I could still find peace through it all.
My daughter had her second resection on March 3. I have a lot of complicated feelings that I am parsing through, but to keep things simple, she is ok for now. Recovery has been similar as the last time, though her cognition hasn't been affected. Instead, she is more unstable walking and has some coordination deficiencies on her left side, but we are working through it. She has a walker that she used in the hospital and yesterday around the house. Today we encouraged her to try getting around without it, and she is doing ok. Moving slower, but not falling. This time the incision was through the back left-side of her skull and the base of her neck, so she has more muscle pain and neck stiffness as she's healing. Again, we are working through it and making progress little by little.
All of us are grappling with our feelings in a different way. My daughter is on dexamethasone, a pretty potent steroid, to help with swelling. She was on it last spring too. It makes her very emotional. On the way home from the hospital, she started crying about our dog that died a year and a half ago. She also has big feelings about losing her hair (which I dyed purple on the ends to help her feel better), being in pain, and missing out on things at school.
My younger daughter has been extra clingy with me. I was up way too late last night catching up on my Bravo shows, and she came out around midnight wanting to cuddle and sleep with me. She climbs on me at the dinner table and wants me to carry her around constantly.
My husband and I vacillate between snipping, crying, and forgiving. We do ok I think with giving each other space for our anxiety-induced idiosyncrasies and balancing the load of caregiving. We alternated nights at the hospital and coming home and playing Barbies with our youngest. He makes spreadsheets to track medications, takes tons of notes during appointments, and goes to pick up food, prescriptions, and whatever else we need. I research, keep track of the schedule, communicate with teachers, social workers, and doctor's offices, and try to calm everyone down when they are getting too emotional.
I've been trying to be present during the sweeter times together, but it's all kind of tinged with sadness. The girls sent silly videos to each other while the oldest was in the hospital. It's always cute to hear them laughing together, but also a bit heart breaking not knowing how long it's going to last.
Last night we were on the deck watching the sunset. We put on a playlist that my daughter's Girl Scout troop made for her, and she proceeded to scream/sing "This Girl is on Fire" at the top of her lungs, and I struggled to keep it together. We then had a mini dance party on the deck. One kid swaying around like a ballet dancer and the other holding on to her walker and shaking her butt.
I'm sure we all need therapy, but with what time? We have 3 appointments in the next two weeks, and then it's daily radiation again until April 17. We're just going to have to get by haphazardly with forgiveness, music, and sunsets on the deck for now.
My daughter is having surgery again next week to remove as much of the new tumor as possible before it becomes entangled with her brainstem. Cerebellum tumors cause issues with gross motor skills. Brainstem tumors cause difficulty with vision, speaking, swallowing, and breathing among other things. I have to imagine that if this disease takes her life, it is kinder minimize that kind of suffering.
She, obviously, does not want surgery. We are incredibly scared about the risks. The last time she had surgery, we were in shock without time to really understand it all. We know so much more now. She could lose her personality, lose her ability to swallow, move her tongue, and talk, or lose even more cognitive abilities. I carry those potential losses around, even knowing that the only other choice is to do nothing.
My daughter isn't aware of those risks. She just knows how bad she felt after the first surgery and how much her life had to change. We talked about being brave. We talked about how so many kids have tumors that can't be removed and the symptoms they suffer because of that. She understood.
Then I had to tell her that she wouldn't be able to be in the play she has been rehearsing since October. She started sobbing. A major loss for a 9-year-old. And us too honestly because we lose an opportunity to see her do something she loves.
My daughter has also been losing her hair, a side effect of the Mekenist she was on. She has lost all the hair on the sides of her head and the back has thinned considerably. She will lose more after her next surgery and re-radiation, so much so that we will probably have to cut the rest off. I have purchased some silk caps to help with pain and for her to be more comfortable. I also showed her pictures of women with the sides of their head shaved. She thought they looked awesome. At a recent event, she saw an older Girl Scout who had her head shaved on all sides with a ponytail on top. My daughter tapped her on the shoulder and told her that her hair was awesome. She gave my daughter a sticker. Small things to make the changes easier to swallow.
After the surgery, we are planning to do craniospinal radiation - something that was deemed too harmful for a 9-year-old last summer. Immediate side-effects include fatigue, hair loss, and difficulty swallowing. A feeding tube was offered as a possibility. At first I said only if it is absolutely necessary, but knowing the way this disease progresses, it might make sense to do it now. I don't know.
Last week I asked our doctor about proton vs photon radiation because proton causes fewer long-term side effects. The long term effects of photon irradiation to the brain and spine include cognitive decline, hormone deficiencies and infertility, thyroid issues, reduced spinal growth, and more cancer. With a pointed look, her doctor made it clear that proton was for kids who had a high probability of long-term overall survival and whose diseases weren't as aggressive.
I write all this knowing the likely outcome. We've never asked for a life-expectancy projection from any doctor. They aren't fortune tellers. But, still, I know. I can hope for stability and for as much time as possible, but none of this is a cure, especially with leptomeningeal disease. And how do you explain that to people who haven't bothered to look up anything about her disease or who ask if she is good now? I can't say any of this out loud because I feel like speaking it will call it into existence sooner. Still, every time my daughter talks about something she's going to do in the future, a little part of me breaks.
As I look at the week ahead and maybe even the week after that, I think about how we should spend that time knowing what could lie ahead. This weekend, we slept in, we watched a movie, we had friends over, and we went to Sweet Frog. We tried to be as present as possible.
When people talk about bucket lists, it's often about going to far flung places or doing something they've never done before. But, how would you want to spend your last few weeks if you knew the end was coming? Perhaps just being with the people you love the most is enough.
I know this is morbid. I have to write all this out to stop it swirling around in my head. Optimistically, she will come home from the hospital after a few days, breeze through radiation fine just like she did the last time, and have an awesome 10th birthday in May when this is all done. I've already got some ideas for the karaoke party she wants to have.
A Song When You Need to Process Your Angry Feelings
