Introductions, welcome


(Kyle Matthews) #63

So sorry it’s neuroblastoma that brought you here, but I’m glad you found us. Where is Eva being treated?


(Tammy) #64

We live Cape Town South Africa. Tests done in the middle shows treatment is working, tumor decreased, lesions almost all gone on liver and bone marrow cancer cells dropped from 90 to 10%. She is a fighter and a person would never say she is sick! Thank you again for the forum!!


(Sam Saffron) #65

Do you know what protocol are you using for treatment in South Africa?

Very happy to hear your daughter is responding well to treatment! :heart:


(Tammy) #66

We busy with aggressive chemo treatment every 7 to 10 days and every session lasted 2 days in hospital and in between we normally need blood transfusion and platelets due to her counts that drop. During chemo she is on amazing anti nauseous and doesn’t get sick and eats really well. We lucky that we managed to keep her weight up but she is also on good vitamins from Anway that increases her appetite!


(Jessica Guess) #67

Wow, good luck with treatment there. There is a set protocol for treatment in the US but it does vary a bit depending on some factors such as response to treatment. Glad she seems to still have an appetite and able to take vitamins. Our son was forbidden to take vitamins during treatment and we had week long chemos with 2 weeks in between. We ended up in hospital after every single round but Christmas Day. I would love to follow all of your journeys if that is ok??? Do any of you having caring bridge or FB pages?


(Tammy) #68

While Eva gets chemo we don’t give the vitamins but we are allowed the next day after chemo. This is such a tough thing every parent goes through! Knowing the operation to remove tumor is next is so scary but the same time can’t wait to get that bugger out of her. Eva also lands up in hospital often then needs blood transfusion and antibiotics for the fevers!


(AJ Bruce) #69

My name is Adam and my wife and I found out yesterday that our eight-month-old son Avery has what the doctors are very certain is neuroblastoma. He just came out of surgery a few minutes ago where they removed a part of the tumor that was compressing his spine and impairing his use of his legs. We’re scared and confused, but optimistic for the future. I just want to thank Jared Hyers for pointing us towards this organization.


(Kyle Matthews) #70

Hi Adam, Jared mentioned your story to me. I am so sorry we share neuroblastoma.

Where are you being treated? Have they let you know the staging? How did surgery go?

I know it’s scary. Please know this site and myself are here to help, however we can. There’s a strong community who can help.

Sending you and your family our love…


(Jessica Guess) #71

Good luck on surgery. I could tell you that it will all be ok, but I was beside myself for 2 days before and after. It was the longest day of my life. positive thoughts your way!


(AJ Bruce) #72

We’re at Arnold Palmer Children’s Hospital for now. We don’t know the staging yet. Lands and biopsies have gone out for testing to determine how treatable Avery’s condition is. Avery is recovering now and sleeping peacefully. He is even wiggling his toes already!


(Sam Saffron) #73

Be sure to check out:

Also, if you have any specific questions or topics you would like to open up to the group feel free to post new topics!

The first few weeks are hellish, but you are very lucky as Avery is very young, in general the younger you are on diagnosis the better the prognosis.

Take good care of yourself! So sorry you are having to go through this.


(Sophie) #74

Hello,
I’m new here and discovering how this forum is working. My son Lucas was diagnosed in 2011 with stage 4 neuroblastoma at the age of 4 years 1/2. We live in France and he received chemo, stem cell transplant, surgery, radiation and acutane with immunotherapy (IL2 and antiGD2, a new trial at this time).
After 16 months of harsh treatment he was declared in remission with check-ups every three months. Unfortunately he relapsed this year in april (after 3 years 1/2 of remission). He didn’t qualify for the BEACON trial because of his renal function and he’s currently getting TOTEM (topotecan and temozolomide chemo) but we were told at the beginning of our journey that there is no cure for relapses (at least here in France) and we know we are just getting more time so we are searching for new treatments here and maybe abroad to bring us some hope.
Thank you for reading and courage for all your little fighters.


(Sam Saffron) #75

I am so sorry to hear about your story, sadly there are many more treatments available in the US than there are in the rest of the world.

One thing you should do if you can is test for ALK, cause if you have this gene there are some very very promising treatments. In quite a few places it is becoming very common to do broad DNA testing in the case of relapse (looking for more than just ALK) I would recommend that.

The talks @markshirran linked are very good and very current.

There are definitely some kids who make it through relapse, at ANR they were saying 20% of kids are surviving relapse

Wishing you lots of luck


(Sophie) #76

Thank you. DNA tests have been done on the biopsy but we don’t have the answers yet. Maybe this week with the results of his scans.
The videos from @markshirran are very promising and full of hopes. Thank you for sharing.


(Kristen Wilson Mitchell) #77

Your beautiful daughter was DX the same day as my daughter we we’re lucky we were DX 2 days after our first dr appt but unlucky as we were DX still with stage 4 too


(Kristen Wilson Mitchell) #78

Hi my Name is Kristen my amazing baby girl Addison was DX with stage 4 neuroblastoma January 15th this yr not even 2 weeks before her 3rd birthday she had her main tumour off her left adrenal gland behind her kidney. we only knew something was wrong when she woke up on the morning of the 12th crying in bed that she was unable to walk we took her to the Dr straight away they did bloods and we were told to go to our closest pead unit 2 hrs away first thing in the morning where they did repeat bloods and with in 2 hrs we were transferred to Randwick children’s hospital Sydney where we were told she had cancer stage 4 neuroblastoma was our offical DX a few days later after her tests were all completed. So she was started on chemo the sunday on the SIOPEN protocol and with in a few rounds of chemo her bone marrow was clear and after her intro chemo and all her reevaluation tests we were told she had no active cancer cell identifiable and she didnt need surgery as her tumour had shrunck so much and was totally calcified (im not too sure about this as i dont know how they can tell that from images alone we will be having further discussions regarding this next week) so we went into stem cell transplant and were are currently day +42 so today is our last day of isolation her bloods are all recovering well and her wcc is within normal healthy ranges so were heading in the right direction she has handled everything amazingly she is so strong she smiles through everything and she gives us such strength <next monday we are heading back to sydney to have all her tests repeated then home again for another 2 weeks off before we will be heading back to sydney for her radio treatment. I really hate this monster and wish all our kids to be free from it forever. its nice to come on here and see children that have beaten this horrid disease and made it to the next chapter of there lives it gives us such hope.

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(Alexey) #79

Hello everyone!

My name is Alexey and our son Venya was diagnosed HRNB (MYC amplified, 2 years and 4 months at time of diagnosis) this January. We live in Switzerland and now in the middle of SIOPEN protocol (between high-dose chemotherapy and radiotherapy). We are happy to share our experience and also to get the same from other families…

Thank you


(Sam Saffron) #80

@Kristen16 Wow we are treated in the same hospital :hospital: very happy to hear your progress, its such a blessing to avoid surgery.

I will be sure to say hello if I see you around :wink:

@Alex happy to see you here, I think you are the first family from Switzerland on the board!


(Jolene Mackay) #81

Hello
My name is Jolene from Scotland in the UK and my 3rd child got the diagnosis of High Risk stage 4 Neuroblastoma (MYCN amplification) on the 9th of June 2016.
We entered the trial below and were randomised to the Modified N7. My daughter Una was 2 years and 7 months at diagnosis.
http://www.siopen.org/siopen-studies/current/high-risk-study
She was happy, normal, stroppy two year old until 21 days before diagnosis a lump came up on her lymph node and then her cheek swelled out. She had no temperatures, no weight loss, no appetite loss just a lump growing at a rapid rate. After 10 days antibiotics and one day checking for mumps, they scanned and the oncologist were in quickly. They found another tumour above adrenal gland that was only 4.5cm so was not causing symptoms that larger ones cause.
She is a wee star, taken to the hospital life no bother. Just finished her 2nd chemo of 5 before going for surgery.
I’m glad this forum exists as sometimes it’s hard to believe what’s happening even harder to find people who are in the same boat.


Family photo taken by dad day after finishing session 2 of chemotherapy.


(Imran ) #82

My name is Imran. My 3 year old niece Alia was recently diagnosed with stage4 highrisk neuroblastoma. She has been inducted into Rapid COJEC. She has completed her first cycle of chemo, which has taken toll on her. She has lost her appetite. Her weight has reduced to 11Kgs a loss of one and half kilograms. Before the chemo it was 12.5kgs. Though there are no signs of nausea and vomiting. But i am worried of her second cycle which starts with Cisplatin and ll follow Vincristine.