Introductions, welcome

(Kyle Matthews) #103

Welcome, and so sorry you’re battling neuroblastoma. Where are you guys being treated?

(Michiel Coene) #104

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.

(Esther Spain) #105

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.

(Sam Saffron) #106

Hi Esther,

Sorry to hear about your daughter, very happy she is in remission. Have you seen the topic Phase 2 DFMO preventative trials ?

(Jacob Stramos) #107

hey there everyone. i just have registered here, thanks a lot for everything! and Sam thanks a lot for that topic. i haven’t yet checked it out but I surely will soon. thanks for everything! support is essential for me now. I have some health problems and i used to spend a lot of time on, hope that here I’m gonna find support, interesting posts, and help!

(Louise Van Loosen) #108

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 :blush:.

(Esther Spain) #109

Thank you @sam, ya estamos en Grand Rapids para DFMO, esperamos poder entrar en el ensayo. La informacion fue muy util. Gracias

(Aaron Basting) #110

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.