A Cure

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.

Yesterday, I read an update that Lucas's cancer had returned after 8 years. While I can't verify if that is true or not, a real update probably won't be published. 

A Song We Used to Sing All the Time

Nathaniel Rateliff & The Night Sweats, "Face Down in the Moment"

Everything Happens All At The Same Time

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. 

Metal to watch with your mom

Apocalyptica "Ride the Lightening"

 

Childhood Cancer Awareness Month

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 ….