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.
