4 months into diagnosis it seems like my life has become NB and work.
Nothing else really exists in my world except for occasionally watching a bit of TV, minimal amounts of exercise and family time. Friends… forget about it. Restaurants, movies etc, forget about it. A short weekend break, forget about it.
I know that at some point, life has got to go back to “normal”, but the cloud of possible relapse will always be there, side effects need to be managed and so on.
Just wondering… for people living with this for a while, how long is it before things go back to “normal”? What is the new “normal”?
We are just finishing transplant in a high risk protocol, what should I expect in the immunotherapy phase, do you get proper breaks from the hospital?
We never did immunotherapy - Ezra’s treatment was in 2009 and 2010. Still, I remember our schedule feeling exactly like that for 13 months. Once upfront treatment is done, life begins to get back to “normal.” But your whole view of everything shifts. Schedules and routines return to normal, sure. How you view life and priorities shifts though.
I was kind of holding back on answering, thinking I’m not the best to address that, but since Kyle did, I will too. I think there will always be something, Sam. You mentioned the thought of relapse and I agree that’s a big thing.
We didn’t do antibody either. We were home on hospice when the first study results were released.
Back in the day (2007-2008l, treatment ended with accutane. Because of some concerns, even though he was “only” stage lll, Braeden has 12 cycles of accutane on his treatment roadmap. He had a lot of side effects. Still, we were only in clinic every 2-3 weeks, so that summer seemed pretty “normal” to me. Really, though, I don’t like the term new normal because none of this is normal. Maybe our routine fits, and surely you will reach a level of acceptance that these things are now your routine, and hopefully you’ll get to appreciate having some real life back very soon. I’m sorry this isn’t super encouraging, and I by no means mean that life won’t be great again. But as Kyle said, so much changes. I can’t imagine going back to some of my old ways amd old priorities.
My husband (years ago mind you) never had any relapses, but did have kidney issues as a result of the surgery they performed to remove the tumor. He also developed lymph-edema and had to have surgery years later to restore blood flow to his legs, most of his current issues now are the result of that horrid mess. We only hope that modern medical techniques reduce the radiation damage that he’s had to deal with.
However, he was a normal, bike riding, Tae-kwon-do fighting, big-brother pestering kid. He went on family vacations and fishing trips, rough-housed with his teenage buddies and wrecked his brother’s car when he was 16. Apart from not being able to walk as far, he was a normal kid.
Today, he’s married. We own a condo with plans to sell it and buy a house. He’s got a full time job, drawing blood at the very clinic that he was treated in, in pediatrics. He’s also going to college, to earn a degree in business management. When he gets his degree and a higher position at the clinic, we plan to start a family. Pretty normal, mostly.
Thank you so much for joining us, stories of survival are very heartening and exactly the type of stories a lot of recently diagnosed people really want to hear about.
When you are presented with your odds at beginning you don’t fully comprehend that a large number of people survive and lead normal-ish lifes. Thanks again for joining here.
Life will go back to “normal” or you begin to accept a new normal. We did immunotherapy and you are in patient for 1 week of the month for 6 months unless they spike fever. There are side effects of course but this part was nothing like the chemo days or bone marrow transplant days in my opinion. Plus their hair begins to grow back at this point which added hope and reassurance we were on the home stretch. I hope this provides relief.
My son was treated in 2000 and getting used to the new life is slow. But it builds each year, just like how everything changes when you have children. I was really concerned because it took me about 5 years to stop feeling numb emotionally. Christmas was especially difficult because I had always loved the season and I just couldn’t get into it for that time period. Plus I had small children that I really wanted to enjoy during the season. But slowly the traumatic memories fade and you replace them with new ones and everyday you hold out hope for a good, neuroblastoma free day. Doctors appointments get farther and farther apart and it gets better. Now my son is in college and doing great. Good luck. Have hope. It gets better.
When you are taken off the path with this dx - you initially feel that it is a detour and eventually you’ll find your way back on the initial trail you were on. Then one day you will realize that there is no going back. It is impossible because the prism through which you view the world has been forever changed and if you did find that path - you would most likely discover that it was no longer the path that you need/want or belong on.
