Welcome, and so sorry you’re battling neuroblastoma. Where are you guys being treated?
We are being treated at the University Hospital in Ghent, Belgium, but I’m investigating a way to get treatment at Mskcc. I’ve had some useful tips already, but it still will cost quite a lot.
Hello everyone
My name is Esther and we live in Spain. My daughter was diagnosed NB High Risk with Myc again and 11q deletion on Junio 2016, She just finished inmunotherapy ( GD2).
We need information about DFMO
We had contact the medical team at Helen deVos children’s Hospital Grand Rapids MI but we need to gather as much information as possible of people that they have been or are staying at the Hospital to have a clear notion of what could it be involved in the treatment for our 5 years old daughter so we can decide what to do and how to proceed.
Thanking you in advance for any help anyone can give us
Best wishes
Esther Rivas
Could it be possible to communicate in spanish as we don’t speak much enghish.
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Hi Esther,
Sorry to hear about your daughter, very happy she is in remission. Have you seen the topic Phase 2 DFMO preventative trials ?
Thank you, Sam! Sorry for not replying to your post earlier - somehow I didn’t see it. Also, I’ve been trying to ‘lay off the Neuroblastoma’ for a bit as options to pursue treatment further than frontline seem limited and prohibitively costly if you’re in Europe. And as he’s NED, we’re just keeping all our fingers and toes crossed he stays that way 
.
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Thank you @sam, ya estamos en Grand Rapids para DFMO, esperamos poder entrar en el ensayo. La informacion fue muy util. Gracias
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On December 13, 2017 we brought our daughter Emma to see her doctor because she started walking as if she was dizzy and was holding onto walls and chairs to walk. We were initially expecting it to be something small like an ear infection possibly throwing off her balance and equilibrium. The doctor immediately sent us for an MRI where a large tumor was identified on her upper spine. Ten minutes into the MRI Emma’s pediatrician informed us of the tumor and told us to prepare to be life flighted from Grand Forks, ND to Minneapolis, MN(U of M Masonic Childrens Hospital), where Emma’s urine was tested positive for Neuroblastoma. Chemo was immediately started that evening and a biopsy was performed on both the tumor and bone marrow.
From the get-go, Emma had nothing but complications. The tumor was so vascular that it bleed extensively, forcing the surgeon to open her up to stop the bleed. Due to excessive fluids her left lung collapsed and a PICC line caused a clot in her right arm. Thankfully the bone marrow biopsy was negative and the tumor also tested negative for MYCN. With that said the surgeon warned us that this is a large tumor and very vascular so currently there was no hope of safely removing it.
After round 1 of chemo and after Emma recovered from the collapsed lung, she was discharged from the hospital on Christmas Day. We were hesitant to go home because Christmas Eve was a very painful night for her, she was up screaming for most of the night and the Oxycodone and Tylenol were not helping. Up until this point Emma also had some function left in her legs - she was walking with assistance and we were hopeful that with therapy, she would regain her strength and walk again. Unfortunately this didn’t happen - she stopped moving her legs and after being home for one day she spiked a fever. We immediately took her to our local ER, where she was started on IV fluids, antibiotics, and transferred via a 5 hour ambulance ride back to U of M Masonic Childrens Hospital.
Another MRI was done that showed her tumor had grown even more, wrapped around her spine, and compressed her spinal cord causing a loss of feeling and function from her nipple line down. An emergency laminectomy surgery was performed to decompress her spine on 12/28, but we were too late - the paralysis remained. The compression of her spine was explained to us as a traumatic spinal cord injury that is unknown if she will be able to recover from. The compression also caused bleeding that forced a spinal infarction(stroke) and also forced spinal edema (swelling) all the way up her neck. Since the tumor had grown after chemo was administered we were told her diagnosis would be changed from Intermediate Neuroblastoma to High Risk Neuroblastoma, and we would need to follow COG’s 18 month protocol including 5 cycles of chemo, surgical recession, Tandem Stem Cell transplants, radiation, and Immunotherapy.
Currently we have completed the first two cycles of chemo and when Emma’s counts are down, she commonly ends up with fevers, forcing hospitalization. Out of the past two months, we have only spent about a week outside of the hospital. We will be starting cycle 3 of chemo next week after harvesting her stem cells. So far all treatments have been done at Masonic Childrens in Minneapolis which is a five hour drive from our home. This has proven to be difficult times for our family as mom(Brandi) has gone home to deliver Emma’s baby brother who was born on February 3. Emma is super happy to be a big sister but it is very difficult for us to be physically apart, especially knowing the time over the next two years we will need to be so far from eachother. We are looking into doing cycles 4 and 5 of chemo in Fargo, ND closer to home which should put us home or closer to home at least for about 45 days. The rest of the treatments will need to be done in Minneapolis or Rochester, MN.
On top of this, other that physical therapy, Emma hasn’t had her spinal cord injury fully assessed. We are waiting to see a Physiatrist on 2/21, and we understand that her cancer must be treated first, then we can address her spinal cord needs - we know she will need her spine fused after the cancer treatments. We are also dealing with new possible neurological problems as Emma has had some issues swallowing liquids. She has recently started coughing occasionally while swallowing so she took a swallow test where she aspirated some liquids. For the time being she’s now on a nectar liquid diet, and we awaiting details back from Neurology. We are praying that the edema in her spinal cord is not causing further issues to nerves higher up on her spine.
Ultimately we want what is best for Emma, so I am glad that this forum is out here with a plethora of information. We don’t yet understand all of the info out there, but plan to keep reading and researching to make sure our daughter is getting the best care possible. She’s been through so much over the last two months, and she has kept a positive attitude the entire time. She has a long road ahead of her, so we will do everything possible to make sure her smile and resilience remains.
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November 19, 2017…is a day I will never forget. This is the day that we were told the four devastating words, that no parent should have to hear…“Your child has cancer”. November 21, 2017…another day I will never forget. This is the day they took my 6 yr old to surgery, for the first time, to place his port for chemo, to do a biopsy of his tumor, and to do his bone marrow biospies. The fear, as our child was taken to the OR, was overwhelming. November 22, 2017…This is the day we received the biopsy results that confirmed Matthew has Stage 4 High Risk Neuroblastoma and the cancer has spread to his bone marrow. Matthew had a 13cm mass, pressing on his right kidney, and was also putting pressure on the nerves that allowed him to walk.
We took Matthew to a pediatric urgent care, on November 19th, for what we thought were hip problems. He had been experiencing limping and weakness, in both legs, and severe pain in his left leg. The urgent care sent us to the ER, at Arnold Palmer Children’s Hospital, for further testing. This is how our nightmare started…
Matthew has recently undergone tumor resection, on February 15th, and the surgeons say that they were able to successfully remove AT LEAST 98% of his tumor!! He has made an amazing recovery, and we are being admitted, tomorrow, for his 5th round of chemo. We are under COG protocol, so he will be facing 2 stem cell transplants, radiation therapy, and 6 months immunotherapy. We are praying, super hard, that the rest of his treatment is a success.
Thank you, so much, for starting this forum. I am sure it will prove to be a valuable resource, as we go through Matthew’s treatment.
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Are you seeing Dr Eslin? My son was at Arnold Palmer for a while in 2010.
Hi, Kyle. We are seeing Dr. Levy. We have met Dr. Eslin, before, when he was making rounds in the Oncology Unit.
Dr Levy treated my son Ezra as well. We really liked him.
Dr. Levy is really awesome. You can tell that he really loves working with children. Matthew really likes him, too, so that makes us happy.
Did you do the COG protocol, or did you seek other treatment? We are supposed to do Matthew’s stem cell transplants at Florida Hospital for Children.
COG protocol is good for upfront therapy, definitely. My advice is to keep one of the neuroblastoma experts in the loop on Matthew’s treatment. Dr Giselle Sholler is my first recommendation, and there are a handful of others in the states.
Your home hospital is great, but if there are any issues during his treatment, it’s nice to have that second opinion who is already familiar with him. Most of them won’t charge to just be kept in the loop. Contact - Beat Childhood Cancer is current.
Thank you, so much, for your helpful advice!
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Hello everyone
Our 20 m/o Abel was diagnosed today with NB. Not a lot of info yet, def not a full diagnosis.
We arrived last week from our vacation at the beach and sort of noticed a bump below the ribs on some of the photos. Next morning (yesterday) we checked the kid and sure enough there’s something there. Straight to GP, then straight to children’s hospital ER and the tumour is identified. Blood analysys indicates NB, MRI done today. Things moving very fast…
Doctor is renonwed in the country. Best hospital around. Previous success stories in the family (adults beating cancer). So we have an idea of what’s ahead and we’re hopeful.
Browsing around to make some sense of what’s happening and found you all.
Have a 4 and 6 year old also, not so confident on how we’re going to manage to keep everyone sane. Did anyone test the other kids for NB?
Great info here, your stories and the stuff you wished you were told.
See you soon with all the questions I’m sure I’ll have when we know the full diagnosis.
Wishing everyone all the luck and strength
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So worry to hear this news, wishing you the best of luck. A lot of the advice we can provide depends on the diagnosis. Be sure to read around the forum there is lots of info here.
Overall the general recommendation is not to test anything with the other kids, there are some extremely rare forms of Neuroblastoma that have genetic links that were found. It is extremely unlikely you would need to test other kids.
Hello,
I’m here because my 2.5 year old son Lincoln was diagnosed with MYCN-amplified stage 4 Neuroblastoma on November 20, 2018. We’ve completed two rounds of chemotherapy on the COG protocol. I have visited Sloan, have a call into CHOP and am trying to become an expert in Neuroblastoma as quickly as possible. The learning curve is overwhelming. Lincoln is currently being treated at Johns Hopkins which has no Neuroblastoma specialists. Here is a photo of my sweet boy and I from this past October.
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Hi everyone,
My son Marko has had a really complicated NB journey. He was originally diagnosed with low risk, stage 1 VIP producing NB in April 2018, at 16 months. The tumour was fully resected, and the follow up scans in Aug showed no residual disease. Then in October he started limping and had persistent low grade fever. After an operation for “right hip septic arthritis” and 8 weeks of antibiotics, the doctors finally agreed to do an MRI scan which showed metastatic infusions in his pelvis and lower limbs. A CT scan showed a large mass at the original tumour site, and a biopsy confirmed a new primary neuroblastoma, with obviously different biology compared to the first tumour.
We are being treated at the Royal Children’s Hopital in Melbourne, Australia, under the care of Dr Michael Sullivan. The team here decided to use the frontline COG protocol for HR NB as they are not considering this a true relapse. Everyone is very confused as apparently there was no previous case in described in literature where a very low risk NB has mutated to an aggressive tumour. We are obviously very concerned that there may be some systemic/genetic issue here that is driving Marko’s body to produce these differing tumours, and at the same time want to explore all available options to ensure he gets the best chance of survival.
He’s just completed the second round of chemo and is feeling great, but we are also completing our paperwork to contact the team at MSKCC for a second opinion.
If anyone has any suggestions or further contacts, please let me know, it would be much appreciated!
Here’s Marko from a week ago enjoying life as if cancer does not exist 
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Hi Everyone I’m Sally, I have read through all your stories of your wonderful children I’m so sorry you are all going through this too but it has helped me to feel less alone.
Our little one Theo has been diagnosed with a differentiating neuroblastoma by his spine in his thoracic region. It is wrapping around his vertebrae so surgery is not possible yet as considered too high risk. The Mycn gene is non amplified which is good. We are waiting to hear the scan result to see if/how much it has spread but he will have chemo anyway to hopefully shrink the tumour away from the spine. We are finding it very overwhelming and stressful waiting for all these results, it feels like we are stuck in a horrible nightmare. Has anyone further along the road got any tips on how to get through? We also lost our first baby 3 years ago when I was 5 months pregnant after 5 years of infertility, ivf etc so this now happening to our rainbow feels so unfair and hard to bare. Thanks for reading
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