Hi my name is Abby Brody and my five year old son, Jacob, has stage 4 Neuroblastoma.
This is my blog. It is called Nightwing as that was my son’s favorite superhero.
I write this blog to give back to all of you who have shared your stories and for my own memory. I know a bit about the cognition of memory and you too will learn soon. Your memory will be worse than ever. Memories are only stored with context, we have none of that. Nothing makes sense. There is no logic in our world.
There are so few of us living in this pediatric cancer world that we need each other. There is no amazon review of stars for us. The only way we learn is through each other. Although…let’s be honest we all know shit. I’ve learned that. We think we know. We think we have read. We think we even understand. We think we can deal and plan. We think we know, we read the stats. We think we know what the next curve will be, but let’s be honest…we don’t.
And to be really honest…the medical community doesn’t know either. Don’t get me wrong they know a lot, but they don’t know the answer to THE question.
You know THE question: IS MY CHILD GOING TO BE OKAY?
They aren’t hiding things from you. They just can’t give you an answer because every tumor is different, every kid a different age, even treatment is different from hospital to hospital. Oh my goodness, just writing this makes me see the parallels. Ugh. This was like your 1st grade teacher telling you its “developmental” for every question you have, because often it is. Ugh. How annoying is that? I get your anger parent. I get it. But know that the school is not to blame as much as the hospital isn’t. They just won’t tell unknowns. They are fortune tellers.
Ugh I digress. I am just trying to point out that you can’t use my experience as a true comparison to yours, even with the same profile (ex: neuroblastoma, age 5, etc.) For example, we are at Sloan and they don’t participate in COG. Reader, you should know that if you are trying to compare, we are not at a COG hospital. This isn’t apples to apples. It’s never apples to apples. It’s just Jacob’s battle and Sally’s battle. Each wearing different armor and carrying different weapons, and some having an advantage as they were born into privilege (and I mean beyond money, but includes birth country, language spoken, education, etc.). On that note I am of privilege so if you need any help understanding things, please do reach out.
Here is where we are in the process at Sloan Kettering (diagnosed June 18th):
- We have had five rounds of chemo
- 13.5 hour-long surgery.
- We received scans this week:
- small mass found near leg, residual from the original tumor (not new growth), but obviously concerning. They don’t want to operate as it is in a spot that can cause nerve damage in the leg
- MIGB score of 19 (originally 24). He has some chemo-resistant bone cancer. We are part of the 20% that don’t have the usual response.
Therefore, we are going off the standard protocol and moving onto the HITS stage 2 trial. We will be the 37th patient to enter this protocol at Sloan. We start on Monday. I can’t find anyone who has blogged about this protocol so this may be the first record of it from a parent perspective. However, if you know of one, please email me (firstname.lastname@example.org)
HITS is getting chemo and immunotherapy at the same time. This is relatively new. I will update you on what happens. I almost wrote “I’ll update you to know what to expect,” but you know better than that. Expect is not a word you should EVER use.
You should also know I write this blog not just for you, but for me.
I write it to read it.
That means you will see random things at times. Sorry. They may not be relevant to our journey, but they are important for my mental health like THIS video. Some of you have mentioned it helps your mental health too. That makes me happy. I post this video to remind myself that after the shittiest day ever, these moments happen. When I brought Jacob home after a day of trauma and we were able to be a family and have “fun.” Now “fun” has changed a bit as you can see. Everything is about cancer. But I post it to remember how Benno, Jacob’s older brother chooses to spend his afternoons. He chooses to “potion” to make germ-killing liquids to help his brother. And yes, he never has a shirt on in my videos. Weird. I’ve noticed too. I swear he wears shirts during the day.
But for my first post I would like to give you advice.
Advice that can only be learned from failure.
I’ve built my career on the WHY. I’m an educator. I have staked my career on the WHY and built lessons, schools, businesses around it. Everything taught or done needs to have a context or it will have no meaning and there will be no long term storage. Without understanding the purpose it has no meaning to the brain. We are wired to survive to make patterns even when none exist. But do not try that here. There is no WHY. There is no meaning. There is no purpose. No purpose except to survive as best you can and be as strong as you can for your child.
I also share that your child will do better than you. They have innocence. They don’t truly understand. My kid says surgery like its a daily occurrence (well lately it has been). They will adapt. You will be the last one to adapt. It’s hard to accept seeing your child suffer. You will fight adaptation at every cost. But you need to to survive. You need to accept the new normal with only your eyes on the prize, remission.
I plan on having my eyes on a cure too, but that is a longer story. Interested in being part of that? Go to www.friendsofnightwing.com
I’ve adapted finally.
It took 4 months to accept this new life. I kept trying before to find beauty in it. Kept trying to change it to fit the reality I want. I was wishing it. Willing it even. I read and read to find answers, believing deep down that there is solution to every problem. However, I’ve resigned or at least for now. I’m not trying to find purpose or even a silver lining. Shit happens. We can’t control it. Just got to keep moving forward. I’m not saying that will be easy. Watching your child suffer is not easy, but I’m not the first to be in these shoes and sadly by the evidence of this hospital’s children’s ward operating at 120% capacity not the last.
So welcome to my blog.