Introductions, welcome

(Kyle Matthews) #43

NED since 2012! Love hearing that. What a great picture, too!

(Kyle Matthews) #44

Aw, so glad he’s talking now. Welcome! I don’t think we have any other Canadians on the board yet, so it’s good you’re here - you’re the first. :slight_smile: Don’t be afraid to post any questions or thoughts at all - that’s what we’re here for.


Hi everyone. My name is Tara and I too traveled/still traveling this dark and scary road. My son Jackson was diagnosed at 2 weeks old with stage 4, intermediate risk, non-amplified NB. The primary tumor was along the spine from t-2 to t-6. There were also tumors on both adrenal glands and it had metastasized to the liver. It was not seen in utero, and believed to be missed because of the location along the spine.They said It would resemble the lungs when not taking on oxygen. Luckily It was caught by my pediatrician during a routine 2 week well check up, when his belly became distended, seemingly overnight. He was eating beautifully, having bowel movements, and was perfectly content. He showed NO SIGNS OF DISCOMFORT. The pediatrician thought maybe a blocked bowel or something of that nature was to blame, and sent us to the ER for testing. After an x-ray, ultrasound, and MRI, we received our preliminary DX of NB, and we were immediately transferred to another local hospital (Hackensack University Medical Center in NJ…we also seeked a 2nd opinion at Sloan) The next day, with our baby only 15 days old our, life spun out of control. Jackson had a liver biopsy, a broviac placed, and extensive MRIs done. We followed the COG protocol, and after 4 rounds of chemo, Jackson is NED and has been for 2 months now. He’s truly my hero. He never really showed side effects from chemo, was absolutely always smiling, continued to grow/put on weight, and has met developmental milestones appropriately. We are so thankful for where we are today. During our journey, our community reached out and rallied around us in our time of need. They raised over 70k dollars in the matter of 2 months and we feel eternally grateful, so in turn, we have started the JacksonStrong Foundation. Our mission is to raise awareness, and provide financial and emotional support to families suffering with a pediatric cancer diagnosis. Thank you for starting this community. It’s unfathomable how it can continue to be referred to as rare, when so many of us are sucked into this scary scary place. God bless all the little angels, and all of you still in treatment. …your children will be in my family’s prayers.

(Sam Saffron) #46

What a cute boy :heart: so happy Jackson is NED!

(Dawn Burgess) #47

What a cutie!!! So pleased for you!

(Jennifer Anne Mc Cabe Weidner) #48

Our 12 year old daughter Elizabeth was dx ten days after her birthday in January with “CANCER”…however if that didn’t rock our world enough shortly after that we were given the devastating news that not only was it cancer, but Stage 4 Neuroblastoma. The protocols/roadmaps were written for most of your children it seems… I feel very alone in that any child I have uncovered who got it as a teen has died.

Our road for how we got here is too complicated, but miss dx was part of the issue because my daughter is an athlete, If anyone would like to read our story you can find it on Caring Bridge Elizabeth Ann Weidner as I would LOVE to connect with families of teenagers who have successfully beat this as a teenager with NO disrespect to any other family dealing with this. As someone said it’s its own beast and no two cases are the same, but it’s widely different to be dx as a teen than 3 to 6 especially. Overall, this just is a living HELL that I never saw coming and can’t imagine the very real possibility of losing our daughter (as we have 3 other boys 13, 6, 3) I thought life was complicated…I know know what complicated is.

(Kyle Matthews) #49

I am so sorry @Jennifer_Anne_McCabe. I don’t know many teen diagnoses, but will search around and let them know to contact you when I find someone.


There has to be some out there, where my husband works at the Mayo Clinic he sees adults come through that are being treated for neuroblastoma. They still have to come through the pediatrics department because it is a childhood cancer, even in their 30’s. Of course with privacy laws he can’t name any names though so I have no idea how to contact them, except through organizations like this one.

(Jessica Guess) #51

Kytril was a god send for us. Zofran wasn’t working and he gets extremely agitated on Ativan. It usually isn’t offered to the little ones but a nurse suggested it and that along with Amend and some Dextrose steroid helped keep the puke away

(Merve) #52

hi. my son Tugberk was diagnosed at 50 days old with stage 4, intermediate risk. The primary tumor was on right adrenal gland and it had metastasized to the liver, under skin and bone marrow. He finished 6 chemoterapy round and 3 round maintenance treatment. Tumor was gone. Thank God! Now he is 11 months old. He started to accutane treatment for 50 mg a day.
God bless all our children.
With lots of prays.

(Kyle Matthews) #53

Welcome merve! Glad to hear Tugberk is doing well now.



My son was diagnosed Feb 5th with Stage 4 neuroblastoma. He is 6 years old. Weight seems to be our only problem at the moment as we prepare for surgery this week, and then a round with cisplatin. Cisplatin made him lose 9 lbs, and he has been slowly gaining it back. Dextrose makes him unbearably irritable, and we were loaded up on five anti nausea medications which didn’t seem to help. I am told that they will be switching anti nausea medications around in preparation for the next round of chemo. We will have very little time to gain weight before we start the tandem transplants.

(Sam Saffron) #55

So sorry to hear about your troubles, many of us end up needing the feeding tube, it definitely takes huge amounts of pressure off the already super pressured lifestyle you have.

Cisplatin is one of the harder drugs we have had to deal with :frowning:

We got by with by with maxolon and ondansetron during our chemo, but each child is a bit different.

(Jessica Guess) #56

Is he on feeding tube? TPN? My son diagnosed week after 4th bday. Only weighed 36 lbs and by time cisplatin came around he dropped to 28. They had him on TPN for a few months to fatten him up for surgery and 2 BMT. He was put on NG tube after we started prep for BMT #1. He will be staying on it until radiation at the least. Might think about that.Also we had to take Carter off of Ativan because it made him a crazy madman. He tried to hurt himself and rip his line out. Dextrodse is good when used with Amend. If not are you using Ativan Benadryll combo?

(Elisabeth Bernau) #57

I know of a 16 year old at Children’s in Dallas. I will reach out and get some info do you.


We ended up cutting his cisplatin dose in half. He went from vomiting every 30 minutes last round to only once this round. Today is our last day in r5. We have MIBG scans before we can move onto phase two. We hope to use that time to place an NG tube to gain weight. Turns out he also developed a lactose intolerance from chemo. He craves dairy, so we had to make a few adjustments.


We had a steroid, the patch, benadryl, ativan, and zofran all going. We were going to switch out zofran this round if he continued to vomit on half the dosage. Steroids make him almost intolerable to be around. He puts his nurses through a lot, so I was happy to hear they didn’t want to put him on one this round.

(Jessica Guess) #60

How did Radiation go? we just had SCT on May 31 for 2d BMT. I have been terrified about radiation side effects and we have no idea what to expect. After speaking with a parent on here. We are trying to teach him how to lay very still so he doesn’t have to be knocked out every day. Any pointers? Good luck to you on the rest of the treatment!


I would love to follow this too. We are trying to find a way to talk to our son about laying still as well.

(Tammy) #62

My name is Tammy, my daughter was diagnosed with stage 4 NB on the 17th of March age 5, we will be finishing round 8 of chemo on Monday and in between chemo we in hospitals due to infections and blood transfusions/platelets.

This is a parents worst nightmare which puts so much pressure on your relationship as a couple and if you have other kids as well(got older daughter 11 years). Through all this Eva is strong every day and smiles no stop, she is my superstar!!

After her last chemo on the 20th, we back to doing all scans and tests and then hopefully operation to remove the tumor, but still along road ahead of us but reading the positive stories puts hope in all of us i am sure!!