Introductions, welcome

(Kyle Matthews) #83

So sorry to hear that. There’s a long journey ahead. Please feel free to ask any questions on this site. That’s what we’re here for.

Those eyes!

(Imran ) #84

Thanks for this resourceful blog.
I have got few things to ask:

  1. Alia is not eating much but the good thing is she is not throwing much out.(should i worry about this) 2. What kinds of fruits and food should she be given and is it necessary to peel off skin of the fruits?(as fruits skin can also carry any infection)

(Kyle Matthews) #85

Those are good things to check with your dr on as well, as they can differ greatly depending on the medication she’s on. I don’t think peeling the fruit skins is important, but it’s always a good idea to rinse any fruit.

There’s lots of options for helping eating to go back up - from the least invasive like finding her favorite foods (they may change depending on the chemo) to more invasive like NG feeding tubes (very safe but can be hard as a parent to see, and they’re awkward day to day). There’s also some meds that can increase appetite - but hopefully trying different foods to find something she’s interested in can help.

(Steve Dolling) #86

Hi. My name is Steve. Our son Spencer was diagnosed high risk stage IV at age 6 in 200something-or-other. He died in 2008 shortly after he turned 13.

I used to contribute regularly on the ACOR mail server. It was important to be part of a community and to share.

I am not entirely sure why I am here. It’s a little different not being in the fight. Yet I found myself strangely drawn here.

It is hard to share a message of hope as an angel parent. The very fact that there are such things as angel parents is mildly terrifying when your kid is in treatment. Sharing a message about how wonderful life can still be after a child dies, seems somehow not the thing you want to hear as you your hope is high for the next course of treatment to work as intended. Yet somehow we all need to know that everything can be OK whatever path we end up travelling.

I am forever damaged and enriched beyond all measure, living this great life we have one day at a time. And it’s all OK. And OK is OK.

(Kyle Matthews) #87

Steve, thanks for being here. I remember multiple times in ACOR when you shared powerful writing. You have a wonderful gift, and I’m glad you’re writing about what you’ve been through.

I too have lost a son, and share that awkward place of whether to reach out to people, knowing our story is the worst possible outcome in their mind, and we’re a scary prospect. I usually reach out to new families in our area in writing when I first hear of them, and don’t follow up for several months unless they do. A kind of “hey, we’re here, and knowledgable if you need us,” knowing it’s usually a relationship for a later date.

Robyn, my wife, likes to say the pain moves from your skin to your bones. It’s less evident, but more a part of who we are. We get happy again, yes, and there’s always this sadness that comes with it.

Glad you’re here.

(Steve Dolling) #88

Thanks Kyle. It’s interesting. I haven’t actually written anything in a long while. Just a few connecting chapters for the book a couple of years ago. I have kind of missed the whole opportunity to engage with the connected communities of families in treatment and grieving families.

We are part of the swim community, the triathlon community, the sailing community, and dabbling with the early retirement community. And we are about to send Foster off to university and then pull the plug. Quite literally. Leave the dock and go sailing off into the sunset. (Which happens to be in the west across oceans, never quite reachable, but always worth sailing towards.)

Everything in our lives has been profoundly impacted by Spencer’s life and our loss of him. We think of him every day and somehow pretend it never happened all at the same time. I would change everything about our lives and yet wouldn’t want to change a thing.

It might be time to start writing again.

(Kyle Matthews) #89

I echo many of those feelings. You should definitely start writing again. I remembered your name when you logged in here and searched my email to find the things you’d sent in 2014.


(Katie) #90

Thanks to Sam and Kyle for posting on the ACOR listserv encouraging “old timers” to visit this space. I’m not a newbie but hardly an old timer. When my son was diagnosed, I reached out to Kyle after finding Ezra’s story online.

My son, Wilson, was diagnosed May 26, 2013. He was 10 days shy of his first birthday. We thought he had a recurrent ear infection or mastoiditis (my hubs has ear problems so weird ear stuff seemed more likely than cancer) so took him to the ER on the Sunday morning of Memorial Day weekend. Parked in a two hour spot. Ha! The resident was quick to diagnosis an ear infection but the attending was visibly shaken by his belly size. Given he was nearly 9 lbs at birth, we thought a big belly was a good thing on a baby. Ultrasound showed a mass. CT of head showed the small lump behind his ear was connected to a softball sized mestasis. They called it a “good size”; I was like a good size? Or like a bad good size? Yeah, they meant good size as in huge. Ugh.

We were discharged six days later thinking, hoping, praying we were dealing with stage IV intermediate risk NB and would need 8-9 rounds of chemo. Got the call a week later that he was mycn amplified. A bummer to say the least.

One round intermediate risk protocol chemo, give rounds of high risk chemo, resection surgery (lost both adrenal glands), BuMel stem cell transplant, 32 rounds of radiation (each under general anesthesia), and immunotherapy.

Currently followed by oncology, endocrinology, kidney disease, and audiology.

We have never been NED but are nearly two years off treatment. Scans in September. He is negative for ALK and PHOX2B.

If you would like to follow or read more about Wilson, feel free to check out our caringbridge site.

Love to all who have fought or are fighting.
-Willie’s mom

(Jolene Mackay) #91

thank you for your post.

(Dana Hilton) #92

My name is Dana Hilton and my 4-month old daughter, Alivienne, was diagnosed a week ago last Tuesday with a large 7cm tumor in her chest/abdomen that the doctors believe to be Neuroblastoma. After having a fever and diarrhea (what the pediatrician thought was just a virus) she continued to sweat excessively when feeding and sleeping. Her pediatrician agreed this did not seem normal and sent us to the hospital to get a cardio ultrasound, which led to an abdomen ultrasound, and a CT scan, which revealed the size and location of the tumor.

We are in Tampa, Florida and had the tests/scans done at St. Joseph’s Children’s Hospital. I’m thankful for this forum since I have so many questions. Kyle, I would also like to connect with you since you are local and would have some insight on doctors and hospitals. Currently questioning if we should stay at St. Joe’s or go to All Children’s. So many decisions…

We waited all weekend for the urinalysis results before they will do the biopsy. Because she is excessively sweating when feeding and sleeping, they were testing to see if it is hormonally active, which can cause complications during the surgery. Has anyone else had experience with this type? This is very scary for me even on top of being scared for the regular biopsy surgery and what is to come. Livy (what we call her) has been amazing through all the tests and scans and always has a big smile on her face. This is what has been getting me through. I’m looking for any advice or just encouragement at this time. Here are some pics of our smiley little Livy.

(Kyle Matthews) #93

I’ll send you a message now!

(Justin Derba) #94

My name is Justin. My 8yr old som

Max was diagnosed in July he has Stage III high risk amplified NB. It’s been a battle he has done 5 round of Chemo 4 before surgery and 1 after. I can’t even begin to explain how our worlds have changed. We live in Ft. Myers, Fl but chose to have his treatment in Boston at the Children’s hospital there. As that’s were we are from. He has a 10 yr old brother who is still in Fl. Their mom has stayed with Max almost the entirety of this so far. I’ve had to juggle going back and forth every few weeks which has killed me not seeing him. But I have to keep my employment and take care of his brother. The daily worry that my phone will ring with bad news has been the most anxiety ridden thing in the world. Max is tough and the hell he is going through and still staying positive and smiling and being overly witty throughout this is nothing short of awe inspiring. Thank you so much for creating this. Reading the stories on here have been a god send.

(Kevin Heuer) #95

I’m Kevin. My third child Declan was born in July. His first hour out of womb was blissfully normal gushy newborn time. Who knew it was sunset for our pre-NB lives.

At his 5 month birthday he’s completed 4 rounds of chemo and one surgery to remove the biggest tumor that claimed his left adrenal. He’s in the stage 4S non high risk club. Still with tumors on R adrenal, liver, and bone marrow. Hoping scans in January reveal the chemo met it’s mark. We can’t wait to tell him, “for the first time in your life, you’re cancer free.”

We’re in Aptos CA under care of Dr. Marina at Lucille Packard. We feel blessed to have great care and support from Stanford and a number of local support orgs. but I appreciate the chance to connect with peer NB parents. I’m a cancer survivor myself and know that the psycho-social parts of the journey are as compelling as the physical-medical.

(Kyle Matthews) #96

Hey Kevin, glad you’re here. We’re here to help however we can!

(Louise Van Loosen) #97

Hello, just joined the group and would like to introduce myself. My son Jules was diagnosed in March 2015 with stage 4 neuroblastoma HR (nmyc amplified). He was five years old at the time. He received frontline treatment consisting of 6 rounds of chemo (N5/N6), surgery, high dose chemotherapy (CEM) & ASCT and 12 rounds of radiation at the Prinses Maxima Centrum, a pediatric oncology hospital in our native Netherlands. He was NED following resection of the original tumor. He was then referred for immunotherapy to Children’s Hospital of Philadelphia, where we spent 7 months. He completed treatment and remains NED up to now.
Relapse is on my mind a lot, especially as our oncologist indicates they don’t see any options to treat an early relapse (within the first year from finishing treatment). Thank you for letting me join and I hope to learn more about other treatments / new developments and I appreciate the contact with other parents.

(Sam Saffron) #98

Hi Louise, thanks for joining. So happy your son is NED.

Options are so limited after frontline, and timing is pretty strict (for both vaccine and DFMO). I am surprised you had to travel all the way to the US for immunotherapy since SIOPEN have it readily available in Europe (but I guess joining the study would be difficult)

There are definitely options for relapse treatment popping up, for example CNS relapse is treated at MSKCC with 8H9. NK cell treatment trials are also popping up. Humanized antibody (hu3f8 at sloan and hu14.18K322A at st. judes) are available and allow administration of higher dosages of antibody. CHOP have some amazing drugs in the pipeline for ALK based neuroblastoma. There are options, sadly most of them are in the US.

(Lauren Maher) #99

Hello, I’m new here!
Wasn’t sure if I was typing my intro in the right spot… Anyway!
My name is Lauren, I’m married to Dan and we have 3 girls and 1 boy. Our 5 month old (at the time) son Thomas was diagnosed with Neuroblastoma on 5th January. He had a tumor removed from his back.
People have asked, how did you know something was up? I noticed he wasn’t kicking his legs as much as usual, so we went to the Dr. He referred me to hospital paediatrician. But the wait was too long, one Thursday morning we woke up and his right leg was hardly moving. I called my Dr and he said to go straight to the emergency room.
We got straight in and we were sent for an ultrasound. ‘We’ve found a mass’ this is when I broke down. My 5 month old, little perfect boy, had a big road ahead.
The next morning we were sent to Brisbane for a meeting with the oncologist. An oncologist. Man!! Then had an mri, Thomas was a champion. Here they could see the tumor wrapped around three vertebrae. They had to relieve the pressure on his spinal cord so did surgery right away.
The next week were full of tests, all of which were good. It hasn’t spread to the bone marrow. We have another mri in a couple of weeks to check on the site. Hopefully it has dwindled away and not grown again. We are hoping we don’t need to put him through chemotherapy.
Anyway through it all he’s been so happy. He’s my hero. He is now just 7 months old, he’s rolling all over and kicking those legs! Him being so happy has made things easier for us as parents. What a start to the year. I hope I can meet and talk with some of you guys about your journeys also. Thank you and I hope what I’ve said makes sense. :slight_smile:

(Lauren Maher) #100

(Andy Liebow) #101

Hi unsure if this in the the right bit, but here goes my son Dexter was diagnosed with stage 4 high risk Neuroblastoma back at the end of October last year, he was put on the European rx plan on the trial, and after completing his introductory chemo he needed 2 doses of TVD chemotherapy, as there was still Neuroblastoma present in his leg. He had surgery on the 27th march and during they took out 1 of his adrenal glands, his recovery has been hit by going into septic shock from having septicaemia post op, this involved him having emergency surgery which has delayed him starting high dose chemo. His body has been through loads already and our consultant has told us to choose carefully if we proceed with high dose chemo, as he is very high risk. Just wanted to know if anybody else’s treatment has gone a similar route and if there is any advice we could take thanks in advance andy

(Michiel Coene) #102

Hi everyone,

Our son was diagnosed with High Risk Stage 4 Neuroblastoma at the beginning of January 2017. He is now 2 years and four months old. We had standard chemotherapy and surgery, but then he relapsed as it was found out the cancer had become refractory. He had two rounds of TVD, and now he is receiving Methotrexate and ICE. He didn’t even make his stem cell transplant.

I am now actively researching other treatment options.