We found the tumor on May 1, seven and a half months ago. There was a month of recovery after surgery, and then a month after that, we started radiation. My daughter finished radiation on August 11, four months ago. The average time from radiation until disease progression is about six months. We got four.
Her latest MRI did not show the stable results we wanted. There was a new area lighting up in her ventricle that was not there before. The doctor said it is suspicious for progression, but she can't say for sure. She will discuss it at her tumor board next week and then present my daughter's case at the national tumor board whenever that happens again. Next week, we will need to decide if she comes off treatment and whether we want to pursue a new clinical trial or not. Doctors typically wait six months to do a second round of radiation, so that is probably not the direction we take at the moment. Despite what the MRI shows, right now, my daughter is doing fine clinically, and she doesn't have any symptoms. I am worried about how quickly the disease appears to be coming back and how all the meds may not be working.
My husband is with my daughter at UCSF. I am home with my youngest. My husband called me during the appointment so I could listen in to the results. I'm glad I was on mute. He held it together much better than I would have. I know how hard it was to keep a brave face and continue with the day as if everything is ok.
They come home tonight, and all I want is to give them both hugs. My youngest has been sleeping with me while they have been gone, and it has been nice not to be alone. I've been keeping myself busy all weekend. Saturday morning, I met a friend at the gym. We hiked and ranted about our problems. I met another friend for sushi. We ate and ranted. I had a book club brunch on Sunday and work yesterday. I've felt anxious while they've been gone. I have never not been there for an MRI. I probably bugged my husband too much with texts and phone calls.
This morning I woke up all puffy-eyed and forced myself to go to the gym. I usually like to go to a class, but I just can't right now. I got on the elliptical and went for two miles. Feel like crying in the gym? Just go faster until it passes.
A Song For Crying and Running at the Gym
Fred again feat. The Blessed Madonna, "Marea (We've Lost Dancing)"
Every year I do the reading goal thing on Goodreads. I don't know why. I make the same goal every year, so it's not like I'm trying for gains. I mostly use Goodreads to keep track of books I've read so I don't forget. It is interesting to see which years I exceed my goal and which years I don't. The low years: grad school, after I had each baby - the second one coinciding with COVID, and after the cancer diagnosis. One thing I have noticed is that while I am really struggling to read fiction right now, I can inhale non-fiction like nobody's business. Give me all the existential books about illness, death, grief, and religion. Apparently I want to mull over all the things people don't like to talk about. So, here's my post cancer reading list so far:
I found this book via Andrea Gibson's Instagram page. It was the first book I read on dealing with a terminal illness and death. Terri wrote the book during the end stages of ALS. While I didn't really vibe with the ayahuasca trips, I totally got the compulsion to seek out any possible treatment or therapy. The parts that resonated most were when she talked about her relationships with her family and friends as they also grappled with her diagnosis.
This is one of the fiction books I read this summer/fall. It is one day in the life of astronauts from various countries as they sleep, eat, and work on the international space station and reflect on life back on Earth. I explained this book to someone who didn't seem to understand why I liked it. It doesn't have a plot and nothing happens. Some of my favorite books are like that. It reminded me of Klara and the Sun by Kazuo Ishiguro in some ways.
This memoir is written in fragments. After the sudden death of her husband, Lin is deep in shock, grief, and dealing with her own health crisis. The short fragments of time and events made this book an easy, addicting read.
I randomly checked this book out of the library and immediate knew it was for me. I read it in about a day in between grading papers. Bowler is a divinity professor at Duke, and she was diagnosed with colon cancer in her mid thirties. The books is about how prosperity gospel and American culture in general are rooted in the mistaken belief that we have some control over our future. If we work hard enough or believe enough, we will get what we desire out of life. If bad things happen, we have to work harder or pray harder. And if we still don't get the end result we want, there must be some reason or lesson God wants us to learn. This book is her learning to let go of the illusion of control.
This is another book I happened upon in the library app. I have loved her other books, so I wanted to read this one as well. This is a brief memoir about her grief after the sudden death of her father. In it Ngozi Adichie tells stories about her father, reflects on their relationship, and grapples with the various feelings and issues that come from trying to bury her father during a global pandemic. She writes, "'Never' has come to say. 'Never' feels so unfairly punitive. For the rest of my life, I will live with my hands outstretched for things that are no longer there."
I haven't read this yet. It is sitting on my night stand. Jaouad was diagnosed with leukemia at 22. The book is about her experience with cancer and then her journey across the country to figure out her life again once she is in remission.
On Giving Tuesday, I shared some organizations on my Instagram Stories that have helped us in some way over the past few months. I want to keep a more detailed list here about those organizations and what they have done for us.
ChadTough - This organization funds the DIPG Navigator. They connected us with a Nurse Navigator specifically for DIPG/DMG and they helped us figure out clinical trials and get in touch with providers. They can also help connect patients with second opinions, social workers, and counseling services as needed. It is all free for patients. We haven't needed the Nurse Navigator much, but she still checks in with us about once a month or so just to see how things are going.
The Cure Starts Now - I came across this organization when I was looking for Facebook support groups. They moderate the DIPG/DMG Support Group for Families that has connected me with other parents going through the same thing and been a real source of information. The Cure Starts Now also funds a lot of research into DIPG/DMG. They have a warrior program, but I have not signed up for it yet. We are trying to balance openness about our experience while also protecting our child's privacy, and I'm not sure I want to have people posting about her.
Pediatric Brain Tumor Foundation - We first interacted with PBTF when we went to the Charlotte Knights game for their Starry Night at the Ballpark Event. They raise money for research, and provide support and education for families. They have an Uber Voucher program that is really helpful for families traveling for care.
Make-A-Wish - Make a Wish Central and Western Carolinas planned my daughter's wish trip, paid for all of our expenses (flights, hotel, cruise, excursions, meals), and sent us a pre-paid debit card to use while traveling. We go on the trip at the end of January, but so far, they have been amazing.
Sunning Hill Jill Kids - This is a small local organization that provided my daughter with a new iPad and case that she takes with her to appointments.
UCSF Family House - We stayed here during our week in SF to start the clinical trial. They provide free housing for families, breakfast and dinner during the week, toys, therapy programs, and fun activities for kids. It's is very much a blessing for families to have somewhere to stay while their children are in treatment.
Victory Junction - I just completed my daughter's application for summer camp here. Victory Junction is a free summer camp for children whose medical treatments prevent them from attending regular summer camp. My daughter has wanted to go to sleep away camp for a few years, and I registered her for girl scout camp last summer. Obviously, we had to cancel. Because of her medications, I don't feel comfortable sending her to a regular camp, but this one seems like a great opportunity and they have a week specifically for children with cancer.
Camp Care - This is another free summer camp for children in Charlotte who have cancer. They only offer it one week during the summer, but if it works out with our schedule, I would love for my daughter to be able to go.
Children's Cancer Partners of the Carolinas - Children's Cancer Partners helps families with the cost of getting medical treatment, including gas, hotel, and flight reimbursements up to a certain amount. They offered to reimburse us for gas costs while going to daily radiation appointments over the summer.
Memories and Magical Moments - I have not reached out to this organization yet, but I know families who have. The fund trips for children with DIPG/DMG, and I may want to get in touch with them in the future.
Alex's Lemonade Stand - They have a lot of resources and programs. I specifically signed up for the Sibling Support Program so that my younger daughter has something special to look forward to and so that she can better understand what is going on with her big sister.
A Kid Again Central Carolinas - This is a national organization with a local chapter. They plan outings for families with children who have a life altering or life threatening diagnosis. Our first outing was to Riverbanks Zoo, which was amazing. We haven't been able to go to another outing yet, but they have had events at the Charlotte Hornets and Carowinds recently.
I recently watched a video by the lead researcher at UCSF, Sabine Mueller. It was about what to do when you get a devastating diagnosis of a brain tumor. One of the first pieces of advice was putting together a team to help. This is obviously a medical team, but also family, friends, and community organizations to help with the various aspects of this journey. I know how fortunate my family is to have supportive family, stable and flexible jobs, and monetary resources that we can rely on. I know this would be so much harder without all of that - if I were a single parent, if I didn't have an understanding boss, if I didn't have good health insurance, if I wasn't able to save money, if I didn't know people who could offer financial support or child care. These organizations can help, but I also know they are not enough for a lot of people. I'm not sure what, if anything, there is to do about those inequities, but donate money and support in whatever ways I can.
One of the things I've been mentally trying to work through is letting go of my disappointment in people who have not reached out through all of this. Family and friends both. Perhaps social media is to blame. Hearting a post can feel like expressing care, but it is not the same as an actual message or text. Keeping up second hand via other friends or family is also not the same as reaching out to us directly. I try really hard not to keep tabs and to let it go, but I am, unfortunately, a tabs keeper. (It's really good that I did not have social media as a teenager, because all of that angst paired with actually knowing who was hanging out without me would have been absolutely terrible.)
Whenever I find myself slipping into this mindset, I usually hide people on social media for a bit, check in with myself to see if my expectations are unrealistic or if I'm centering myself too much, and ask myself what I would do in their shoes. But there are people who, if the circumstances were flipped, I would have messaged and checked in on. So it does sting to realize that they may not think the same about our relationship.
Most of my disappointment isn't directly mine though. I'm carrying around disappointment for my husband who has less support than I do. It is hard standing by and watching your partner be hurt without being able to do anything about it. I don't have the same expectations or strong emotional investment in the the people he feels let down by, but I still feel that hurt for him.
So, if I still feel disappointed, what do I do with those feelings? The way I see it, I can tell people how I feel, I can hold on to it, or I can try to let it go. I don't want to do the first two, so it's number 3. But, how do I actually let it go? Write angry letters and delete or burn them? Make a blog post about it? Therapy? Redirect my thoughts? What is the mental process here and are there actual steps I can take? And since our situation is ongoing, what do I do with those feelings as the disappointments compound?
It's honestly a process I'm working through. However, I keep coming back to focusing on the positives. I was thinking this morning that I should make sure I'm putting my energy into people who have put energy into us. A community is built on people who show up for others. If people aren't showing up for us, those aren't people I can depend on or invest a lot of my energy into. If people are showing up for us, how can I be better about showing up for them?
I'm afraid I'm not that great at showing up. It's so easy for me to bury myself in my own life and assume that my efforts won't mean much because surely there are other people who can offer support much better than me. Or I think reaching out to a person I haven't spoken to in a while would be weird, so I just won't. In writing this out, I'm realizing that maybe I just need to forgive myself for my past self-centeredness. Maybe in working on doing better for others, I can let go of these negative feelings. I don't know.
Regardless, I've written this before and I'll probably write it again, but I've been continually touched by the people that have shown up and reached out, even in small ways. I have learned a lot about the kind of person I want to be for others and how to model that for my kids. Those are the tabs I am keeping and book marking.
I see posts from cancer parents talking about how their kid handled their appointments with grace, and how kind and thoughtful they are, and how they are always thinking of others. My kid does handle her appointments well. She hates getting blood draws, but pushes through it anyway. She is bored by all the medical talk, but is generally polite to all the doctors and nurses.
Real talk though? She's an asshole sometimes. She rolls her eyes and is sarcastic and rude to family members. She is self-centered and critical. She gets overwhelmed and angry.
I can't fault her for having negative reactions to things. We all get to have those. I just find it difficult to meld who I remember her being as a younger kid with who she is becoming now. I was telling my husband that we knew who the 6-7-8 year old versions of her were. Now we have to meet and learn this new version of her. One day we had a kid who was excited about everything and wanted to hang out with us all the time to now having someone who is unhappy doing anything she doesn't want to do and who will roll her eyes at everything we say.
I can remember my parents telling me to stop rolling my eyes and talking back. Now I get to experience it from their perspective. Parenting toddlers is physically exhausting. Parenting adolescents is emotionally exhausting, not to mention a kid who, on top of being a tween, is on all kinds of serious medications and facing a terminal illness.
And I feel guilty for having these negative thoughts. If this is our last Thanksgiving or Christmas together, will it be spent with everyone annoyed at each other? I made us get family pictures taken this weekend (because, again, what if we don't have many opportunities for more), and when I look at them, am I going to remember that I cried in the car on the way there or that my kids kept complaining about walking too much and wanting to go to the playground instead?
I felt pretty shitty afterwards, and I didn't want to look at the pictures for a while. (They ended up fine by the way, my own body image issues aside). I decided I didn't want to stay upset, so I made everyone have a family meeting to talk about attitudes and being considerate of each other. Then last night I made us watch Inside Out 2 so I could use it as an instruction manual for preteen brains and emotions. Honestly, it was great and my own preteen LOVED it.
It's weird - the things we have control over in this process and the things we don't. We did not choose our doctors. In the hospital, doctors just appeared. A neurosurgeon, a neuropsychologist, an oncologist, and countless others just appeared in the room and gave us information. We kept seeing the oncologist after everything, and luckily it has worked out. But, we did not make a conscious choice or do any research about the doctor.
The radiation oncologist was also just assigned to us. I'm sure there is a process behind the scenes, but we are just told who to go to and so we go. We only met him maybe twice the entire 6 weeks in treatment.
We don't choose when we have appointments. They just appear on My Chart. If we have a conflict, I will try to get them changed, otherwise we just rearrange our days to figure it out. A lot of the time, I don't totally know what the appointments are for. Sometimes they do labs, sometimes they don't. Sometimes we see nurses, social workers, child life specialists, and sometimes we don't. People just appear, ask the same questions, and we talk to them. I do like reading all the notes in the chart afterwards. It makes me feel like I'm a good parent. I get her to her appointments. We make small talk. My daughter is normal and well adjusted.
Right after we got the diagnosis, I saw on a My Chart note that we were assigned a Patient Navigation Acuity Level 4 for treatment. I'm not sure what that means exactly, but it felt like everyone was constantly checking on us, so it must be for serious cases. I think we've been bumped down since then because clinic appointments are not as intense, and people aren't constantly asking me how I am handling everything. I like that the office is so organized and coordinated, but it does feel like being on a patient conveyor belt sometimes.
However, we do get to decide on the treatment plan. We can refuse or seek out different treatment options and are the ultimate deciders, as we should be obviously. But it's also weird because what the fuck do we know about cancer and cells and medicine? I don't know if we should take X medicine or Y medicine. I don't even know what all the options are to ask good questions a lot of the time.
Some parents give their kids supplements and various therapies that are outside of the the "traditional" treatment plan. I know this is a way to enact some control over something that feels so out of control, trying out any possible solution in the absence of effective treatments. But then, if there is any success, it becomes selling that plan as a solution to others. As humans, we love anecdotal data - we make sense of things through stories. So, one person's success with alternative treatments is super persuasive. One story isn't a cure though. Wading into those kinds of treatments feels overwhelming to me because what the fuck do I know about how the body works or how cancer works or how all these different chemicals interact with each other? I want someone with years of medical training and experience treating this specific disease to tell me what to do. But, I guess no one really has the right answer and it is up to me and her dad to decide what is best for her whole self. That's a lot of pressure.
One of the drugs she is on, Mekenist, is having some side-effects. Nothing major at this point, but she has had an upset stomach occasionally and has some skin rashes popping up. The clinical notes call it "skin toxicity." So, I spent $100 on fancy lotions and shampoo to help in addition to the hydrocortisone and a topical steroid cream she was prescribed. I found these recommendations on another Facebook group specifically for caregivers and people on these drugs. The point of the group is to talk about managing side effects. It's weird the groups that spring up to help regular people understand and deal with medical treatments. There is definitely a gap between what doctors tell us could happen and knowing what we should do about it when it does. Doctors want to know about all the vitamins my daughter is taking and don't want her on a lot of supplements. But, can I give her probiotics for the stomach issues? I don't know. Do we just give Imodium regularly or should we wait until there's a problem? How much googling is too much googling? How do I learn to trust myself through this?
A song to scream in the car with your kid after a day spent dealing with their eyerolling
I wasn't sure I wanted to have two kids. I sometimes think of the summer of 2016 after #1 was born as the long dark summer. I had a newborn who didn't sleep very well. Breast feeding was hard, but I convinced myself that formula was not an option. I was stuck inside watching TV. I did not have the capacity to read a book. I looked at my phone so much that I developed pain in my hand and had to get a wrist splint specifically for cell phone hand. I wanted a kid, but I was not prepared for a baby.
I loved her so much, but it was also exhausting and monotonous. I kept wishing time away - I can't wait until she can start daycare, I can't wait until she can eat solids, I can't wait until she can walk, I can't wait until she can use the bathroom herself. It felt like time was dripping by. I think probably a lot of new parents feel that way. You have no idea what you are doing. You are anxious and tired, and mourn the way that life used to be. I didn't learn about matrescence until this past year, but I wish I had known what it was sooner. It would have probably really helped.
Now, for various reasons, many of my friends only have one kid. I also thought I'd be ok if I only had one. Then after 3.5 years, I wasn't. The feeling that I needed another just happened out of nowhere. I'm going to partially blame the song "My Only Child" by the Highwomen for making me cry every time I heard it and convincing me that I didn't want just one kid.
I found out I was pregnant at the end of February 2020, and then 2 weeks later, everything shut down. I remember reading about pregnant women dying from COVID or women having babies and then dying from COVID days later without ever having held their children. I read about a local family with four young kids and both parents died from COVID. It was a horror show daily. So, we quarantined a lot. I threw up every day for two months. In July, we rented a peaceful lake house 20 minutes down the road just to get out of our house. I went to doctor's appointments alone. And no one came to see us in the hospital when #2 was born.
A friend recently wrote of her own COVID baby: "She arrived during a pandemic and has continued to bring sunshine and laughter to the heaviest of times."
And, honestly, same.
I loved being home on maternity leave with my 4-family (as #2 says). It was fall and the weather was perfect. We went for walks and to the park. We napped every day. I wasn't stressed, and I dreaded going back to work. Because I was able to work from home the following winter and because COVID was still a thing, we didn't send #2 to daycare until she was 8 months old, and I still cried the first day after I dropped her off.
#2 turned 5 on Saturday. She is in many ways the opposite of her big sister. My oldest is a typical oldest child. She is a rule follower and a perfectionist. When she was 4, she didn't want to practice writing because she was so scared she would make a mistake. She would have accidents in bed or on her cot at nap time because she was afraid she'd get in trouble if she got up. She loves to read nonfiction science books, memorizing all the weird animal facts and quizzing us about them. She likes to make friends and perform for people. In preschool, she had to give everyone a hug before we could leave. She doesn't like to be sweaty or dirty or uncomfortable in any way. She loves going on adventures to new places.
In contrast, #2 was an easy baby. She slept well for starters. She wasn't particular about taking a bottle. Listening to music would calm her down. She didn't mind being in her car seat. At 5, she is silly and head strong. She will share all of her candy with you, but if you do the "count-to-five and then you are in trouble" thing, she will sit and watch you count to five, never doing the thing. She told me to throw away all her toys because she was done with them and does not care. She loves dress up and princesses, but will also jump in puddles and roll around in the sand. She usually wants to stay home and do puzzles. If you ask for a hug, there's a big chance you won't get one.
Despite these things and despite their 4.5 year age difference, #1 and #2 love each other a lot. Without even trying, #2 brings light and laughter and play with her. She, more than anyone probably, has helped #1 recover mentally and emotionally from treatment. She wants to play card games and make believe, do puzzles, and read picture books - and who is her bff to do it with? Older sister. While #2 can be temperamental and stubborn, she is decidedly not boring. She also isn't filled with worry about treatments or the future. She is just herself, and our house would be a lot different without her here.
On Saturday, October 18, we rolled out of bed at 3:30 AM and made our way to the airport to catch a plane to San Francisco. The travel day was uneventful and long, and I spend the hours grading papers on the plane. We landed at SFO around noon. The day before, we had been told that the UCSF family house had a room for us, which we were relieved to hear. If that didn't work out, we had back ups. A friend of a friend offered us her Airbnb in Inner Richmond and a Girl Scout mom added me to her Hilton friends and family so we could book at a discount. All very nice offers, but really nothing could beat a free stay 3 blocks from the hospital with breakfast and dinners included. They also provided us with a free Uber from the airport to the house.
The Family House is nice. It is in Mission Bay, a neighborhood that barely existed when I lived in the Bay Area. It is across from a food truck rodeo and putt putt golf course and a block away from a Mission Bay Kids park. There's a neighborhood grocery and lots of coffee shops. Our room was basically a dorm room. There were two twin beds, a fold out recliner/bed, a TV, closet, and bathroom. Not a great set up, but functional enough for the week. We gave my daughter a bed, and then my husband and I took turns sleeping on the fold out chair.
Across the hall from our room was a communal kitchen with a communal food pantry and fridge. Items for everyone were donated from a local food bank. There was also fresh veggies from a local farm and sourdough bread from a local bakery. Each family staying in that "neighborhood" had individual cabinets and mini fridges where we could store our own items. There were tables, couches, toys, and TVs. The house also had an outdoor patio, music/game room (courtesy of the band Train), and a lending library. We were in and out a lot, but they had therapy pets visit one day, crafts during dinner, and a movie night.
Most of the families there seemed to keep to their own floors or were in an out for appointments. There were two families on our floor that we talked to. Most families seem to go home on the weekends, but when we got there on Saturday, one family was in the kitchen prepping for their twin's birthday. They were turning 8. The mom and daughter had been at UCSF since May getting treatment and now waiting on a liver transplant. The dad and son moved to the Family House in August because they didn't want to be separated any more. They are from Arizona. Another mom had been there since January waiting on a liver transplant for her son who was about 2 or 3. She lives outside of Sacramento and goes home for the weekends to see her other kids, but comes back to UCSF every week.
We talked a bit about treatments and diagnosis. It is weird having these discussions because my daughter doesn't look sick. She does not look like one of those kids on the St. Jude's commercials with no hair and pale skin. Outwardly, you would not know that she has cancer. A social worker at the house told my husband that our daughter looks like she is doing really well. She is, and I am hopeful that she will continue doing really well. But, we are also newly diagnosed, and there is a very real possibility that could change quickly.
Anyway, after getting settled, we ventured across the street to get some dinner from one of the food trucks. Later, my daughter and I walked up to Safeway to get some snacks and breakfast items for the week. The last time I lived in CA, I did not have a kid. Walking around the Safeway on 4th and King where all the train stations meet might have made me a little uncomfortable as a single adult, but it's definitely a different experience when you have a kid with you and someone dressed in an ape costume blasting music from their boom box necklace jumps out at you from one of the aisles. I'm just going to chalk it up to exposing my sheltered, suburban kid to some culture.
On Sunday, my mother-in-law and her husband took us out to sight see a bit. Before leaving for SF, my daughter said that one of the things she wanted to do was to see the bridge. So, that's where we went. But, I think my daughter, with her short term memory issues, forgot what she told us. The entire time she had the worst attitude. She was rolling her eyes, complaining about being there and being cold, wondering what we were doing, and just generally being a grump. Its like the time change, stress from traveling and impending medical treatments, hunger, and tween attitude all coalesced to turn her into a giant asshole for the day. And we couldn't even see the bridge because of the fog.
To top it off, no one had a plan. I try very hard to not take on that mental labor and stress when it is not my family we are dealing with. But, sometimes it seems that other people, especially ones who don't regularly live with children anymore, don't understand the ticking time bomb that is a hungry, tired, extremely annoyed kid. In this situation, my brain goes: where is the closest place with easy parking where we could get lunch that I KNOW my kid will like. We cannot go wandering around and eventually find somewhere acceptable. We cannot stay in the foggy part of the city because kid is cold. I looked up nearby restaurants on yelp and find a pizza place 10 minutes away in Sausalito (easy parking + sun shine + food she'll probably like). So, that's what we do. After eating and in being in the warmer weather, my kid was slightly less angry. Slightly. She still had to wander around with adults, which she wasn't thrilled about, and hated anything we tried to get her to look at.
Monday was MRI day. We had just gotten an MRI a few weeks before, but they needed to do another one to get a baseline for their study. It was going to be sedated so they could do brain and spine and do a lumbar puncture. That means nothing to eat or drink after midnight except water and apple juice. The MRI was scheduled for 10:30 AM. Everything went fairly smoothly, except when waking her up from sedation. She hasn't really had any issues waking up before, but this time she was so upset that she did not have sweat pants and had worn jeans instead. She cried trying to get dressed. She was mad getting into the wheelchair and waiting for the shuttle to take us back to the house. Once back at the house, I let her eat as many bowls of Cocoa Puffs as she wanted.
Tuesday she got an echocardiogram. This is so they can make sure the medications don't have an adverse impact on her heart or liver. Then in the afternoon, we had to go back and meet with the trial team to review the results of all the tests so far and talk about next steps. We had also been having delays getting one of the medications in, so they wanted to make sure we could get them. Everything looked good. Her MRI was stable from the last one, so while there is still some inflammation and activity from her surgery and radiation, it is either unchanged or getting better.
After the appointments, we ventured on the T-line to Chinatown, another place my daughter really wanted to go. We went into some stores, bought snacks and trinkets, and went to a random restaurant where my kid hated everything. So, to appease the beast, we went to an Italian restaurant in North Beach where the kid got calamari and pasta, and I got a much needed glass of wine. After dinner, the kid was DONE. So, back to the house we went.
Wednesday was a free day with no appointments. My MIL came up to the city again, and we took the T to Union Square. The last item to check off on my kid's SF To Do list was to go to Ghirardelli. I did not want to go all the way back up to the Marina where it would be cold and foggy, so we just went to the store in Union Square. This was good enough. She got a milk shake and was happy. We wandered around a bit and then made our way back to Mission Bay to the kids park where she could play. The SFPD was having a Halloween neighborhood outreach event with bounce houses and trick or treating next to the park, so that helped the kid's mood. She was climbing out of whatever funk she had been in, though to quote her on the phone with her sister: "The bounce house is a little boring, but you would probably like it."
Thursday we officially started the trial medications. She had to get an IV and blood work to get a baseline before starting medicines. Then, she was given ONC201 and trametinib. The only issue she had was some dizziness after taking them, but it went away fairly quickly. We had to stay in the office for about 2 hours for monitoring and to talk to the nurses about taking the medicines and documenting everything. We were given pages and pages of information. After a long morning, we were able to get some lunch before we had to go back for a final blood draw. During that time, I decided we should pack our stuff and get a hotel near the airport for the night because our flight was so early in the morning.
Once we were all done, we got an Uber to our hotel. As soon as we checked in, it was like the mood shifted. The beds were huge and fluffy. We had air conditioning and privacy. There was a bar. Everyone was happier. We hung out in the hotel's lobby/bar area, playing games, watching football, and eating the food we got delivered from some random restaurant in Burlingame.
We caught a shuttle at 4 am Friday morning. I was nervous about our first flight to Detroit because we weren't sitting together. We had to book so last minute that there weren't any seats together. A nice lady next to my daughter offered to switch with me without me asking, and everything from there was fine.
We arrived home around 5 PM and went down to my parent's house to pick up my younger daughter, who was so happy to see us that she was a tiny ball of chaos until we got her into bed that night. That Friday was my birthday, and when we got home, my mom had chili cooking in my crockpot and carrot cake in the fridge. Even after watching a 4-year-old all week, she still wanted to make my life a little easier, which is incredibly kind. We proceeded to stay home, sleep in, and veg out most of the weekend.
While in SF, we were asked by a few people if we missed CA or what we like about NC. I personally am happy to have lived there, and I am happy to be here now. It's hard to know what kind of community we would have built in CA had we stayed. We were in our 20s, and people in their 20s kind of suck when it comes to support. While it's possible we could have built solid connections, most of the people we knew there have moved away, even people who grew up there. While CA has it's pluses (weather, food, politics), it also would have been a much harder life for us, and to be honest, I don't miss it.
An acceptable song by a boy according to a 4-year old
"While counsels of grandmothers meet around the world forecasting how to protect and nurture the planet, the women of the future are being born today. To be born is to be brave, a calling to fully participate in Earth life, and all its pain and glory, a self-educated guess, another kind of wisdom, a rich and exciting existence." -Pamela Anderson, Its Me, Pamela
"And so it is: Life marches on, imperfectly. We age; we remain in the clutches of some painful patterns and scenarios; we grow out of others. In the hands of a large, mysterious universe, one thing is clear: we won't not be stretched beyond our limits, ultimately broken or broken open, and to what we do not fully know. Perhaps resurrection isn't best considered a big, one-time event; perhaps we learn it in tiny movements, with tiny decisions. Amidst all of it, we choose to keep showing up, stretching our hearts and legs to rise again." --Terri Dillon, No Pressure, No Diamonds
Aubrey Plaza was on a recent episode of Good Hang, Amy Poehler's podcast. (In my alternate universe life, I went to NYU for college and became best friends with Aubrey.) At the beginning of the episode, she compared the grief of losing her husband to the movie The Gorge. She said that it feels like "a giant ocean of awfulness that's like right there and I can see it. Sometimes I just want to dive into it, and just like be in it. Then sometimes I just look at it, and sometimes I try to get away from it. But, it's always there." I think that's a really good description for this experience.
I've realized Mondays have become my wallowing in the awfulness days. The weeks are busy with work and school and life. We fill the weekends trying to do fun things with friends and the kids and catching up on chores. Then Monday hits, and I am home alone in the quiet. I am teaching all online this semester, so I only go to campus two days a week. My husband likes to do his in office days at the beginning of the week, so Monday, I'm alone. I usually do some laundry, clean the kitchen, and look for anything to do besides grade papers. So, I research brain cancer. I look for some magic answer that will tell me how all this will go. I check in with other families I'm following and moms I've been talking to. And I wallow.
I like to scroll back through Andrea Gibson's Instagram page and read the pieces posted there. I haven't watched Come See Me In The Good Light yet and I haven't braved their substack yet, but it's on my list. It's a good reminder that its ok to embrace the grief and also acknowledge the amazing gift that is being alive.
It's Tuesday, and I feel less like wallowing today. Here's a list of some good things:
Friends who insist on coming to visit, even when I don't want them to, who buy Wicked tickets without checking first, and who sit on my deck drinking White Claws and complaining about work.
Going to concerts out of town with old friends, drinking way too much, and eating pizza with them at midnight.
Parents who buy a house down the street without consulting me just so they have a place to stay when they come to help with appointments and child care.
All of the people in our extended circle who have offered money, door dash credits, plane tickets, and places to stay when we travel. I am still learning that accepting help is a way of honoring those relationships.
Finding time to do art projects with the kids, even if they annoy me during the process.
A husband insists we all look at the sunset every evening and who takes pictures of the moon from the driveway every morning.
The sunsets from our back deck.
Our cat who likes to get under the covers in my bed and press her claws lightly into my leg as she goes to sleep.
K-Pop Demon Hunters dance parties in the living room.
Having my 4 year old lay on the ground in front of me and declare that she is pants as she folds herself up.
Kids who creep into my room at 6am for cuddles, and knowing that it won't last forever, so I try to soak it all in and turn those fleeting moments into core memories for me and them.
We are at the beginning stages of PNOC022, and so far it is been a lesson is staying flexible. On September 23, we have a meeting with UCSF to discuss my daughter's eligibility for PNOC022, Cohort 5. They have a spot open for someone with an NF1 mutation, and wanted to make sure we were interested and ask some questions about her treatment so far before moving forward. Then, on September 30, we had the consent to treat meeting and signed all the documents. Now we are just waiting for them to sort out scheduling so we can go out there.
The trial will require us to travel to San Francisco for about a week the first time. It is looking like we will fly out on October 19. I'm not sure of the return date yet. UCSF wants to do another set of MRIs and other tests to establish a baseline for her. We had a last minute appointment at our home clinic to do blood work and an EKG for the trial this past Friday. I also got everyone flu shots in preparation for all the plane travel.
After that first week, we will have to go back out there once a month for a day or so each time. Like with her radiation treatments, my husband and I plan to alternate months, but my daughter has to go every time. I worry about the travel being too stressful for everyone. To make the choice more complicated, UCSF finally got in touch with Duke who said she would be eligible to get treatment there. The doctor at UCSF called me today to ask my thoughts, and I said that before we made any decision, we would have to actually talk to Duke. Regardless, we don't want to delay getting started on treatment. So, it is possible that we could transfer her care to Duke in the future.
Last week I really felt like UCSF was the right choice for us. They have been communicative and on top of planning everything. Duke denying us really made me feel like the universe was pushing us to UCSF for a variety of reasons. But, today, the cost and logistics of monthly travel is really setting in. I applied for an airline points credit card and TSA pre check today to help with costs and time. We got a referral for the UCSF Family House where we could stay for free, but it won't always be available. My MIL's husband is still recovering from cancer, and she still quarantines when she travels, so I'm not sure they'd want us popping in every month with our fresh airport germs. The government is shut down and who knows how long the TSA and FAA workers will be willing to go without pay. It's just exhausting to think about, and I feel sad about all of it.
My daughter got cast in the play at school again this year. They will have weekly rehearsals, and she will have to miss some. I'm really happy that she gets to be a part of it, but also sad that we have to think about travel and doctors appointments when making extracurricular commitments.
I'm also sad that we have to leave my younger daughter home. I'm sad that she is being left out and that we don't have more time for her. I'm said that we haven't been able to sign her up for gymnastics and dance and soccer like we did for my older daughter when she was this age. Her birthday is November 1, and I'm sad I can't devote the time, money, and energy to plan a party for her.
If we could transfer to Duke and we like them ok, it might be the better choice for quality of life. This weekend we made jellyfish lanterns for our town's lantern parade, happening October 25. I hope we will be back in time to go.
Last week, an article about a Belgium boy, Lucas Jemeljanova, who was cured of DIPG was circulating. My sister-in-law sent it to my husband. My coworker mentioned in a conversation one morning. It has been posted in a few online groups and subreddits. Some people see it as hopeful; others see it as clickbait. My thinking is somewhere between those two.
I don't think clickbait is inherently bad. I personally had never heard of DIPG or DMG before my daughter's diagnosis. I had heard of glioblastoma, another deadly brain cancer, probably because it also affects adults. Adults can be diagnosed with DIPG/DMG, but it is primarily a childhood cancer, and therefore receives less attention (and less funding). If clickbait articles get people paying attention to the most deadly childhood cancer, great.
But, as a parent looking for information to help my child, the article is also misleading and full of gaps. If you read reports of the BIOMEDE study, he was the only one who experienced long term survival. Most died within 9 months. That is not a cure. The fact is that this disease is not curable - yet. The cancer cells with the mutated messaging are always there. In the brain, it is extremely difficult to get rid of them. You can't surgically remove healthy brain tissue. You can't cut off the body part. You can't blast it with radiation willy-nilly. And it is difficult to find medications that cross the blood-brain barrier.
There are other articles about successes with CAR-T therapies. One or two patients in a cohort of 10 or 11 who see some success. No last names, no follow-up. No idea if they are still alive. As a parent researching this disease, the lack of details about mutations, cohort sizes, updates on whether someone is still alive or not is a bit maddening. And without these articles calling for more funding, without them calling out the fact that pediatric brain cancer receives so much less funding than other cancers, without them talking about the fact that pediatric brain cancer research is being defunded on the federal level, the possibility of a real cure becomes so much more impossible.
There was an installation at Cure Fest in DC this weekend for Childhood Cancer Awareness. It was a Wall of Angels with pictures of children who have died from cancer. Picture after picture of kids who died from DIPG or DMG. That is the current reality that so many parents are living with.
Is there hope? I have to believe that there always is. Maybe my kid will be that rare one-in-a-million who survives long term. It has happened before this current report, and will happen again. But, I also have to live with the reality that statistics aren't on our side. Our truly best hope, and the hope that has been expressed by so many parents, is that our kids will live long enough for a curative treatment to be found. Again, a hope that is impossible without funding and attention.
Big appointments and life events seem to have been happening in waves all summer. We had a few weeks of lull after the start of school and the end of radiation, and then everything happening all on the same week.
Last week started with an hour and a half meeting with the neuropsychologist to go over the results of the 5 hours of testing that took place two weeks before. After the meeting, we were sent 15 pages of test results. It was a lot. But, to sum it up the best that I can with my limited knowledge of how the brain works, basically, my daughter has a lot of strengths that have helped her compensate for the effects of surgery and radiation. She has extremely high reasoning and puzzle solving skills as well as verbal memory and processing that have helped her. We knew that her processing speed was significantly slower, and the tests did show that it is now below average compared to other kids her age. However, what I didn't realize was that her motor skills were also impacted.
The thalamus is the pathway that allows different parts of the brain to communicate, and it is particularly critical for motor function. Where she shows weakness is with graphomotor skills or writing. Basically, she uses all of her cognitive power to make her hand form letters and therefore cannot take in information at the same time. So, it would not be possible for her to listen to her teacher and write down what was said. She is also not likely to retain anything that she writes, and it will also take her an extremely long time to write anything. I noticed this in May when her teacher sent some story prompts for her to complete, and it took her a day and a half to complete the assignment. It was a great story, but man did she work on it forever. She also said that she noticed the change in class as well. Her teacher has students write story summaries, and when they are done, they can have free time. The result of that is my daughter does not get free time.
The doctor's recommendation is for her to have access to dictation software and the ability to complete fewer questions if writing is involved. That will be absolutely necessary for any standardized testing. Additionally, while some things like her memory might improve a little, most of these changes are permanent. In fact, she could see improvement in a year and then experience decline a few years later due to late radiation effects. Its a hard pill to swallow, but it is also just one of those things that people have to adapt to. Extremely capable athletes get hurt and can no longer play. Extremely smart kids get brain tumors and have to learn new ways of doing things. When accessibility advocates say that anyone can become disabled or need assistive tools, it is absolutely true.
Anyway, the next morning was her post-radiation MRI and office visit. This is the first time since her hospital stay that she did the MRI awake. She was really nervous about it, and getting an IV specifically, but she handled it like a champ. The MRI was only of her brain, so it took less than an hour. It is a much quicker process if they don't have to put patients to sleep, so I was glad that she was so calm about it.
The results of the MRI were ok. There is still some swelling in her ventricles, but it has gone down a little. There is also some fluid that seems to be old blood from surgery. It all seems to be normal post-radiation, post-craniotomy swelling, but if it doesn't go down further, we may have to consider a shunt. She also lost weight after radiation, so we are starting an appetite stimulant to try to get her back on her growth curve.
The good news is that there is no tumor. However, that disqualifies us from T-cell trials that want to have disease to actively watch. Instead, we are trying to get her accepted to PNOC022, which is a Phase II drug therapy study that looks at ONC201 in conjunction with other treatments like everolimus, which has shown some effectiveness with H3K27M/FGFR1 co-altered tumors. Plus, there are study locations close to home. Unfortunately I think there are political issues between Duke and Charlotte, so Duke has said no to her getting treatment there, but there are study centers in DC and Columbus that our doctor is reaching out to.
After all of those appointments on Tuesday, I took my daughter to the Cheesecake Factory for lunch and we treated ourselves to calamari, pasta, and cheesecake. Did I spend $100 on lunch? Yes. Would I do it again? Yes. Then we explored the fancy mall in Charlotte and ended up in Nordstrom's buying new shoes.
Wednesday night, I took my 9 year old and 4 year old up to Virginia to my parents' house. My mom had purchased Lindsey Stirling concert tickets for my eldest's birthday back in May. My daughter listened to her music in the hospital, during every radiation treatment, and during her MRIs, so she was pretty excited about the concert. In August, while in the waiting area during a radiation treatment, I sent an email through Lindsey Stirling's website. She has a link to "Wish Fulfillment" and I definitely played the cancer kid card to get us free VIP passes so my daughter could meet Lindsey. Her team emailed me back and were so nice. When we checked in the VIP experience on Thursday, they knew exactly who we were. During the meet and greet, Lindsey spent a little extra time with with us, and we got a few more pictures than normal. My daughter said "I didn't even know that was possible!" So, that was pretty special.
The concert itself was a hilarious experience. When we got there, I noticed that there were a bunch of people wearing black, fishnets, leather boots, and metal band t-shirts. Then there were the Lindsey Stirling fans wearing not that. Obviously, I did not look up who she is on tour with or I would have known. It turns out Lindsey Stirling is on tour with metal bands. Imagine being at a metal show with your mom and your 9 year old daughter who is wearing lavender shoes with butterflies on them. Hilarious.
The first band turned out to be great. It was Apocalyptica, a metal band from Finland who head bang while playing Metallica covers on cellos. My daughter was yelling and throwing metal horns, while my mom asked what that hand sign means. Lindsey's show included a Sandstorm cover, a cover of I'm Blue (Da Ba Dee), and Kashmir by Led Zeppelin. She was the middle act, rather than the headliner, so it was fun, but her set was only an hour and didn't include any aerials like her Christmas shows. Her set also included a lot of death and angel imagery, so that was interesting. My daughter LOVED it. We didn't stay long for the last band, Halestorm. It was late, we were tired, and we didn't know any of the songs.
We came home on Saturday. While we were gone, the girls' passports came in the mail, so we can get on with planning the Make-A-Wish trip. I also have a meeting next week to update her 504 plan. Other than that, my girl is trying out for the school's robotics team tomorrow and is trying to decide which part she wants to audition for in the school's Mary Poppins play this year.
I started this entry yesterday without having a clear purpose other than the compulsion to write something. I started by saying: "For now, I haven't been crying as much." But then today, I happened upon a Facebook post that broke me.
For the most part, since we've completed radiation, we've been able to re-enter our "everything is fine" bubble. Sure, her diagnosis is always there under the surface, but it's easier to ignore when we aren't going to the doctor's office every day and she is generally ok. So yeah, for the most past, I have been crying less. Once a day is normal, right?
Last week, we had a 5 hour long appointment with neuro-psych, and we will get the results on Monday. We have the post radiation MRI next Tuesday and a clinic follow up immediately after. For now, we've been trying to enjoy some down time. We've had friends over, we've re-started Girl Scouts, and we've gone to Carowinds and the zoo. We went and got passports so we can plan her Make-A-Wish trip, and we are going to a concert next week. I try to keep in mind how lucky we are to get this time and to have a child who is hopefully still tumor free.
Then, September 1st happened. September is Childhood Cancer Awareness month. I've been following a lot of different pages on Facebook. Some are support groups, some are non-profits. The posts are pretty frequent and regular. Since September, many of them have been posting tributes to children who are currently fighting cancer or who have died. For DIPG/DMG pages, it is a lot of death. In the posts, they will talk about what the parents have been doing, and many take on the labor of raising awareness and money for research. Childhood cancer receives only 4% of federal cancer research funding and brain cancers receive even less than that despite being the most lethal. DIPG/DMG even smaller. I can usually get through the posts without sobbing. In a morbid way, I find them comforting. If the worst happens, at least there are others who have gone through this too and are surviving on the other side.
But, today, I clicked on a profile and the first post said, "I'm so sorry Kaia" with a picture of their daughter who died three years ago at 7. The apology gutted me. My daughter trusts me to protect her, to care for her, to act in her best interest. She trusts that her doctors will do the same. She trusts we are going to make her better, and that might not be possible. I'm so sorry.
I scrolled on, and there was another post, gutting too, but well written and I'm going to put it here to remember it. The train hasn't hit yet, but damn if it doesn't feel like it is coming all the time.
Imagine waking to randomly find yourself in a horror film. Your beautiful six year old daughter has been shackled to train tracks, bound with unbreakable chains. Way off in the distance you can see a train coming, slowly chugging along at just a few miles an hour, but unrelenting. A gripping panic sets in as you desperately seek help, and yet all of the police, firefighters, and engineers just throw up their hands and say there is nothing they can do to remove the chains or stop the train. They tell you to focus on making memories with your daughter in her final days while she lies shackled to the tracks. You feel utterly abandoned and alone in your family’s struggle.
You rapidly go through the first four stages of grief—denial, anger, bargaining, and depression—but not the fifth stage acceptance. There can be no acceptance, because your daughter is still here with you, scared and in need of your help. So instead of reaching acceptance, the first four stages of grief just endlessly loop, over and over again, as you live in a state of latent panic, trying every day to find a way to save her from the oncoming train. You stay up every night researching, becoming an expert in trains, shackles, tracks—anything that might yield hope. You spend all of your time and savings scouring the Earth for a breakthrough. You bribe, you threaten, you cheat. You wish that throwing yourself before the train to take her place would somehow stop it. You find yourself morbidly envying parents who lose their children to car crashes, because at least that is quick and there is less suffering. And through all this mental anguish, you also need to put on a strong face, comfort your daughter, and urge her not to worry about the chains or oncoming train, because Mommy and Daddy have got this.
But in the end, you fail her. After ten long months of desperation, the steadily chugging train arrives, and you watch it slowly crush her before your eyes, while you hold her hand and tell her how much you love her and how sorry you are that you failed her. And after she draws her final breath in your arms, you feel the expected sorrow, but also an unexpected twinge of … relief … and you fucking hate yourself for it.
Then comes the after. The sleepless nights. The endless “what ifs.” What if we had gotten an MRI sooner, leading to an earlier diagnosis? What if I had been smarter, bolder, more fearless with treatments? What if I had stayed on treatment X, which was working, instead of switching to treatment Y? What if I had not treated at all, put her through less pain, and spent more time with her? What if we had better luck? What if God cared? What if, what if, what if ….
Today is the last day of radiation. The team at the photon radiation center have been really great. They greet my daughter with warmth and enthusiasm every time. They have her music queued up, and they recently gave her a few new squishies to play with during treatment. Despite the horrible reason why we go, they have been kind and I hope we never have to see them for treatment again.
After that we have meet the teacher night and then a celebratory Italian dinner to mark the end of this stage.
I was talking to a friend this weekend about what the next school year will look like. Her son is starting high school, and only a few of his friends are going to the same school. She commented on how he has grown so much over the summer and is starting school changed and more mature. Then she said how my daughter is different because of what she has gone through this summer, and she is different in ways that her peers can't understand. Neither of us are sure what this will mean for our kids this next school year. We definitely can't take away the challenges they will face, but we can at least guide them through it.
I don't know why I hadn't thought of that before, but I just didn't. I was thinking about her changes as deficits - things that would prevent her from keeping up with her friends. But, they aren't that. Yes, her brain processes information differently than before, and she might struggle with tasks that used to be easier, but she is also changed in her ability to handle challenges and pain and in her compassion for others. It sucks that she has to go through this, but there can also be growth through it too, and those differences aren't bad things.
It is easy for me to get stuck in a deficit mindset. To focus on people who haven't shown up in the way that we've needed or wanted. To focus on the difficulty of our present moment. But we do have a lot to be grateful for, and I think it is healthier to put our energy into being thankful for what we have and the people who have extended support in whatever way they can. We can also count the ways we've grown stronger and how we can act with more empathy for others because of what we are experiencing. I know I've written about this before, but I have to constantly remind myself to shift my focus and perspective.
So, today is the last day of radiation and we are working on thank you cards for the radiation therapists. I hope they know how much their small acts of kindness and care helped make this process a little easier.
A Song about Gratitude
Brian and Kate Torwalt, "Hallelujah in the Hard Things"
My daughter has 3 radiation treatments left. We've completed 27 so far. She has handled the last month of appointments without complaint. My husband, my mom, and I have split up the task of driving her to and from appointments, but obviously she has had to go to each one. It take about 30-40 minutes to get there depending on traffic, so by the time this is done, she will have 30-40 hours of being in the car, 30 radiation appointments, and 3 blood draws. Before school starts in next week, she will have had 45 medical appointments since her surgery in May.
We did not take a real vacation this summer, and we could really use one. But, school starts and work continues, and so we go on.
My daughter has not had many side effects during treatment, but she has been really tired this week and has been less hungry overall that usual. She did not eat much dinner on Sunday night, and Monday she got dizzy and fell down, hitting her lip on the fridge when she was trying to get some orange juice. She stayed home from camp Monday and Tuesday, but went back today.
Yesterday afternoon we met with Make-A-Wish, which seems like a right of passage for parents of kids with cancer. My daughter wants to "go on a cruise to multiple islands." When the volunteer asked for a non-travel wish as a back up, my daughter couldn't think of anything. When a shopping spree was proposed, she said she already had enough stuff. We decided that her back up is a mini art studio in her room.
It feels weird accepting gifts like this because we can afford to take a cruise. We can afford to buy our child whatever she wants. But, I guess it is the fun of allowing her to pick something and having it come true. And, it will be nice to let someone else do the planning.
In the meantime, I've been researching clinical trials. We have to wait until after her follow up MRI in September to see what she is eligible for. CAR-T cell trials would require us to be in another city or at another hospital for a month to 6 weeks. The timelines and requirements are different depending on the trial, but basically she would be in the hospital for at least a week, and then we would do follow up appointments weekly for a while. There are trials are in Seattle, San Francisco, Houston, and Memphis. Those are all plane flights away, and we would have to live there for however long until the appointments get spaced out enough that we could go home. It is overwhelming thinking about the logistics of how that would work. But, families with kids the same age or older than mine are making that choice for hope of a treatment that works.
There are 2 children who are on a CAR-T trial at Seattle Children's. They both have DIPG and have survived on trial for 4 years when the average survival is a year after diagnosis. However, they have to get T-cell treatments every 3-4 weeks. One family flies from Vermont to Washington every month for treatment. That is an extra $1,000 every month for just plane flights, not to mention the logistics of flying with a sick child, taking off work, and leaving other children at home. The commitment and requirements of that astounds me, and I wonder what that would look like for us.
There are other trials for ONC 201 and 206 that would require less hospitalization and be within driving distance. There have been some "successes" with those drugs here and here. But, when you see those stories, and then look them up to see where those people are now, they are usually dead. So, it may work for a few years, but cancer, especially brain cancer, is tricky and mutates and treatments stop working. Tumors grow back and can't be surgically removed. And for every "success" story, there are many more stories of people for whom treatments did not work or who were unable to get on a trial at all. Just yesterday, this story of an actress named Kelley Mac who died of DMG was all over my new feed.
School is starting next week, and I want my daughter to be able to attend as normally as possible. But, is it that really a priority when her life is at stake? How much do we balance normalcy and the need for treatments that would extend her life?
We recently attended a local baseball game curtesy of the Pediatric Brain Tumor foundation. Both of my kids were taken to the field with the team for the national anthem, hamming it up like usual. At the end of the game, we went onto the field to light lanterns for families like ours and to watch fireworks. The first family on the field was a family who had lost their son to brain cancer. The announcer talked a bit about their family and their son. Then families with children currently in treatment or who have survived brain cancer came onto the field, followed by support people like medical professionals, friends, an extended family. We were standing in the in field near second base turning around and looking at all of the lights. People in the stands had their cell phone flashlights on. My daughter started crying, I started crying. It was a lot. Later, my husband asked her why she was crying and she said that she was so sad for the family that lost their son but also happy that her tumor had been removed.
When my daughter had her craniotomy, I was initially worried about changes she might experience. Who would she be when she woke up? Depending on the part of the brain that is affected, some children have trouble walking and talking. Some experience personality changes or mood swings.
In her case, she was able to walk and talk after surgery. She was a little weak at first, but was able to walk around the block within a week. She was able to remember things and her personality came back. All of those were a huge relief. But, in the three months since surgery, I have noticed some changes, particularly to her executive functioning skills and concentration. I am thinking about these things because I will need to work with her school to create a 504 plan for her. We also have neuro-psych testing at the end of the month to make sure she has appropriate accommodations. So what have I noticed?
Before surgery, she would get herself up for school, get dressed, and make breakfast before the rest of us got out of bed. Now, she can still do those things, but it takes way longer. She gets distracted and forgets what she is doing when she walks into a room. She has to be reminded of tasks frequently. She has trouble remembering steps to tasks that she's done many times before.
When she was in kindergarten, I used to sit on her bed in the morning and constantly remind her what she needed to do next so that she could make it to the bus on time. Then, in first and second grade, she had a list she would use to stay on task, but could manage her morning routine herself. This year, we may have to return to the lists and the step-by-step guidance.
My daughter has never been the kind of kid who can eat and watch TV at the same time. She gets sucked into shows and cannot multitask. She is still the same, but a little more extreme. Now, she cannot eat and listen to conversations around the table. She starts listening to what everyone is saying rather than eating. At dinner, everyone else is finished and she has only taken 2 bites, despite our constant nagging to eat, eat! At school, students have 10 minutes of silent lunch to eat before they can talk. This might be sufficient for her to eat something, but I'm not sure it will be enough.
When she was in kindergarten, I asked her teacher about testing for ADD. At gymnastics that year, we noticed that she was distracted by all the other kids there and was not able to remember routines like the other kids. Her teacher said not to worry about it until second grade because some of those things are age appropriate, and she might grow out of it. We chalked it up to her being extroverted and didn't worry about it. She was excelling in school, admitted to Composers in second grade, and then AIG in third grade. She made friends and was doing well.
Now, when I look at a list of executive dysfunction symptoms, she checks them all.
difficulty with organization (forgetting items)
problems planning an initiating tasks (needing prompting to begin projects)
challenges with focus (easily distracted)
trouble with working memory (forgetting instructions or multi-step directions)
difficulty with emotional regulation (strong reactions to things outside of her control or expectations)
challenges with social interactions (understanding cues and following conversations)
Some of these things are just things kids do because their brains are still developing. I have seen kids who struggle with these way more than my daughter. But, she did not struggle with these things before to the extent that she does now.
The hardest one for me to witness is the last one - challenges with social interactions. Its hard to see her being awkward or going along with something because she doesn't want to say she doesn't understand. In general, when she has had friends over, I can tell that she doesn't always follow what is going on and is a bit awkward talking. She has developed a stutter like she can't find the words that go next, so she repeats herself a lot. She says, "what?" and "got it" a lot when she is trying to follow conversations. And who knows, maybe she would still have these issues regardless because 9-year-olds are weird and awkward. But, I do think it is exacerbated by effects from her brain surgery. Her friends have been pretty patient though and no one, to my knowledge, has pointed these things out. They might not even notice or care themselves.
Then, last weekend, we went to a birthday party for a friend's daughter, and it wasn't great. While my daughter and the birthday girl don't go to the same school, they have done gymnastics and soccer together, and have been friends since preschool. At the party, my daughter knew the birthday girl and another girl, and that was it. Normally, it isn't an issue, and she will just play with whoever is there, but, they are entering 4th grade this year, and I guess that is when kids really start forming friend groups. So, at the party, my daughter, who is not really part of the friend group, was left out and ignored. No one was being mean to her, but no one was inviting her to join them either.
It was hard to watch and brought up a lot of my own issues about being left out. I know that figuring out who your friends are and aren't is just part of growing up, but its still difficult to witness your kid going through it. And for me, it's compounded by all of the other emotions I have about my daughter's situation. She's been through so much in the last few months, and I'm really hoping that she can maintain her friendships as we wade into whatever the future holds for us.
Of course, finding and maintaining supportive friendships is really hard as an adult, much less for 9-year-olds, who can be self-centered and oblivious about what other people are feeling. At the party, I watched as the two girls my daughter knew tried to plan a sleep over with my daughter sitting right next to them. My daughter excitedly said "Sleep over?!" and one of the girls responded, "I'm just talking to her right now." I had to go to the bathroom to compose myself, and then we left early.
That night when I tucked my daughter into bed, I struggled with how to bring it up. I don't want my interpretations or feelings to influence her, but I also want her to know that she shouldn't accept that kind of behavior from a friend. While she doesn't have to be invited to everything, it still isn't cool to have someone plan an activity you aren't invited to right in front of you. I told my daughter that what they did wasn't nice, and that if she ever feels uncomfortable anywhere or like she is not having fun, that we can just leave. She cried. I cried. And the next day, I invited one of her good friends over to play, and they got along great.
Sometimes the hardest part of my day is being in the car. It's where my brain decides is the best place for intrusive thoughts and all the dark thoughts about my child's diagnosis. Maybe putting them here will help me get them out of my brain, my own Pensieve.
When my oldest was 2 or so, we went to a get-together at my husband's coworker's house. There was a pool she could swim in which was a major selling point. When we got there, his wife brought out all of these little plastic animal toys, explaining that her son loved them. I came to realize that her son died when he was little and she had saved these toys. She later told me she also had a daughter who was stillborn. At the time, I remember being so sad for her and relieved that it wasn't my reality. My kid was healthy. Whenever kids die in car crashes, at summer camps, or in bombed buildings, there's sadness - but also maybe a bit of relief that it isn't my reality. I wonder if that's how people look at us now. Sadness and relief.
I wonder, if your child has to die, if it would be better to lose them suddenly and unexpectedly or to watch them slowly die from a horrible disease. The first way would be like ripping off a band-aid. Quick and painful. Maybe they didn't know they were going to die. Maybe they didn't feel anything. But, you'd have to live thinking about all the moments you didn't appreciate while they were happening, all the things you didn't say the last time you saw them. The second way, you (and maybe your kid) know the end is coming, you savor all the moments as much as possible, but you have to watch them slowly lose their ability to walk and talk, to be in pain, to stop eating or drinking. You have to make decisions that will end their life, but you get to say all the things you want to say. Either one is horrible. And while people always say they can't imagine what it would be like to lose a child, losing a child seems to happen to a lot of people.
What if I chose to only have one kid and then I had to watch them die? What will my life look like with only one child if she does die? What will our family look like in the aftermath, and will we as a family be able to survive the trauma of it all?
After I dropped my kids off at daycare this morning, some of the staff said that they were praying for my daughter and that they just knew she was going to beat it. I thanked them and then practically ran out the building before sobbing in my car. The song that was playing when I started my car?
We are on week three of my daughter's radiation treatments, and so far so good. She doesn't have any fatigue yet, and is feeling pretty good. Her treatment in total takes about 10 minutes. We walk back to the radiation machine room. She lays down on the table. They put a warm blanket on her. They put the radiation mask over her head and snap it down on the table so she can't move. They raise the table and make sure it is lined up correctly. I tell her I love her, and we all step out of the room leaving her there. The doors slide shut, and I wait.
I wonder what it is like to lay there with the lights and the noise, not being able to move. I wonder how it feels. I wonder what she thinks about while she is in there, listening to Lindsey Stirling and squeezing her squishy toy.
I was talking to my youngest daughter the other night before bed. I asked her how she was feeling about her sister's treatments. If she felt left out or scared. She said that she was worried that she would have spiderwebs in her brain when she was older. She said that she was worried that it hurt her sister to have her forehead cut open and that it would hurt her too. I told her that what her sister has is really rare. That her dad and I never had that and that she probably wouldn't either.
Its really hard to see your kid going through something that you've never experienced, that you can only support them through. It really hard to tell them that their sibling probably won't have to experience this and have them know how truly unfair it is. I know none of us can ever know what bad things will happen to us in life, but at least I had a full childhood, a young adulthood, and got to determine what my life looks like as an adult. I got to experience having her. And it's hard to face that my daughter may not get those same opportunities.
At the end of May, right after I got the pathology report back, I took her in for her post-surgery MRI. The MRI was sedated because they needed to scan her brain and spine. The nurse who took us back for anesthesia commented on how smart my daughter is and that she would probably go to an Ivy League school someday. I smiled weakly and said maybe, while thinking in my head that she might not make it to middle school.
I know the importance of staying positive, but it is really difficult sometimes, especially when all of the published information measures overall survival in months. A better prognosis just means more months than average.
I try to check in with my daughter to see how she is handling everything, without disclosing too much of my own thinking. What are her fears? Her worries? I wish I could crawl inside her head and see what's in there. So far, she hasn't said much. Just that she tries not to think about it. Maybe that's my problem.
In navigating all of these medical treatments and appointments, we have found so many caring, helpful people to help us through it. From the very beginning, we've felt treated with care.
In the ER, the nurses had to insert an IV as she was being admitted to the hospital. They talked my daughter through the procedure, let her feel the different devices, and then distracted her while they poked around her veins. Then, they brought her art kits and card games to help pass the time.
The first time we met our oncologist, he sat with us in the hospital for an hour talking through research and therapy options, medical trials, and next steps for our daughter. He was kind to her and answered all of her questions.
The Saturday before her surgery, doctors on the floor brought my daughter a sausage biscuit and bo' rounds for breakfast because she told them Bojangles is her favorite restaurant. These are people we only saw a few times who did what they could in that moment to make something scary and uncertain a little lighter.
Now that she is getting daily radiation treatments and weekly appointments in clinic, we see so many of the same faces.
We have a child life specialist at every appointment who pops in to see how my daughter is doing. She found out that my daughter likes making up jokes, so she brought her a notebook to write jokes in and a joke book she found. Every appointment they share jokes. The other nurses and doctors ask to hear jokes as well.
The radiation techs ask my daughter questions about her hobbies. They brought in a speaker from home so that she can listen to music while getting her treatments.
The nurse navigator asks how we are doing and they truly want to make sure that we have the resources we need to get through everything.
And just yesterday when we showed up for radiation, the social worker gave her a brand new iPad she can take to appointments. We have experienced truly amazing displays of kindness and care throughout this entire journey from people who go beyond what they have to do.
I was reading a post by another mom whose child has brain cancer. She wrote:
Every day, countless families are thrown into the similar turmoil, whether through cancer or another illness. The grief, guilt, and regrets are universal. To our small yet vital community that has protected us, I ask you to help others connect as well. Together, we can navigate this side of humanity with grace.
The world is kind because we choose to make it so. People are kind because they want to be and because they can be.
In a moment where it feels like individualistic and cruel policies are winning, where babies are being ripped from their parents off the streets, and people are losing access to vital resources, we have to remember the power we have in being choosing to be kind. We truly don't know what the person next to us is carrying.
In the last two months, I've found myself doing a lot of magical thinking - framing my reality around beliefs that I know are temporary. After surgery, we existed in a reality where our kid was recovering well and would not need more treatments. While logically I knew there was a possibility that she would need radiation, I chose instead to believe that she wouldn't.
Then we found out that she has an aggressive cancer for which there is no permanently effective treatment, and we had to come to terms with that. While logically I know that her tumor will likely regrow, I'm choosing to live in a reality in which it won't.
She might have metastatic cancer. But, the negative lumbar puncture has allowed me to continue living in a world where she doesn't, at least until tomorrow.
The in-between times, the times where we don't have all the information yet and are waiting for appointments or test results, feel like living in a liminal space. I'm in some kind of temporary waiting room that I've constructed to keep us all safe until a new piece of information pushes me out into the harsh glare of reality. After a few days of reality, I begin to mentally rebuild the safe room again.
This has also led me to focusing on the favorable details of her disease and blocking out the unfavorable. The tumor was circumscribed, it was operable, they got all of it, the spots on her spine are so tiny the oncologist didn't initially recognize them as disease. Then I ask a dumb question like how quickly do aggressive brain tumors typically regrow after radiation - 9 months was the answer - and my safe room comes tumbling down again.
I've been seeing this kind of thinking in the parent support groups. Some people think that cancer is caused by parasites and that ivermectin will cure it. Another person posted a video of a guy claiming to have cured his DMG through meditation and the will power of his mind. (Some googling about that guy led me to a pretty harmful cult group that convinces people to forgo modern medical treatments and instead train their minds to believe they aren't sick.) It is easier to believe that doctors are in the pockets of drug companies and are lying about serious diseases than to accept that cancer often happens randomly without clear genetic or environmental causes, and that sometimes there isn't a cure.
In my most recent bit of magical thinking, I decided that maybe I was a witch or a shaman in a past life, which has given me prophetic dreams in this life. I know, I know, but also hear me out.
When I was pregnant with my daughter, I had a dream that an old lady entered my body and became my baby. It was one of the realest, weirdest dreams I've ever had. In the hospital before her craniotomy, nurses kept commenting on how mature my daughter is. One nurse said she was sure that my daughter had been here before. I told her about my dream, and the nurse said it gave her chills.
A week ago, there was a really strong thunderstorm in the area. It was around midnight or 1 AM, and the thunder and lightening sounded like it was right over my house. I was in and out of sleep and had a waking dream that the lightening somehow cleansed my daughter's body of cancer.
Magical thinking? Sure. But also, I get to live in a room where lightening healed her until it is proven otherwise.
