Introductions, welcome

(sally potet) #123

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

(Mark) #124

Hi Sally. Chemo is amazing stuff. Our son came into the emergency dept super lethargic and avoiding bright lights aged 9 months. His tumors were everywhere. Behind his eyes. In his jaw. Liver. Bones. Vertebrae. His primary abdominal tumor had pushed his aorta all the way over to one side instead of where it should have been. Stage 4 & Mycn amplified. He spent his first week of chemo face down on the crib/bed in the oncology department unable to move. He came out of that first week on chemo stronger than how he went in. He came out of the 2nd round of chemo stronger than that. By the 4th round it was small enough to operate on and remove the primary tumor. By the 5th round it was undetectable. He’s 18 months old now. Walking/talking/eating. He’s not out of the woods yet but chemo has given us 9 months that we just wouldn’t have had otherwise.

Only tip for getting through is to not look too far ahead. This is a long process. Get through each stage as best you can and then worry about the rest later. Get the tumor shrunk. Get to surgery. Go from there.

Best of luck Theo. You can do it!

(Sally Burbage) #125

Thanks Mark, it means alot that you took the time to read and reply to me, it bolstered me up. I’m really glad that your little one is doing so well. They are close in age,Theo is 22 months. It just feels so surreal at the moment as his tumour was only discovered by chance on a chest xray for pneumonia. He is running around like a typical toddler, full of energy and eating normally etc. We would still have no idea if it wasn’t for that xray. Thanks for your advice on not looking ahead, i will try my best not too. The good thing is that we live 40 minutes from Southampton hospital (uk) which is one of the best for pediatric oncology in the uk, so we are being well looked after. Take care

(Sumera Hassan) #126

Hi all,
My daughter was diagnosed with stage 4 HR NB MYCN amplified in january at 18month of age. Symptons started in December when she regressed from walking to crawling and would drag her left leg when cruising. Just before xmas I noticed her gum had swollen where her bottom tooth was coming out. The hospital told me her leg limp was due to possible viral infection and to take her to the dentist for the swelling. The dentist said its a eruption cyst and will go away once tooth erupts. Four days later I went back as it had significantly grown in size and was referred upwards and onwards. Turns out that was not a cyst but a secondary lesion in the jawbone. Her primary lesion on right adrebal gland was so large it had pushed liver to the other side and was between liver and kidney and wrapped around main blood vessel. They later found bone lesions on left femur where she now has a fracture from the lesion having eaten away the bone. Other bone lesions are top of both arms and also right ribcage although I’m assured these are small and should clear away soon. We have just completed round 6 of rapid cojac with two more left before hopeful surgery next month.

I am looking into the most effective treatment plan for my daughters cancer. I know the nhs is restricted with what it can offer so if there is anything out there more effective I would like to know sooner than later. This is why I am over the moon to find this forum online. Would be grateful if anypne has any information or could direct me to the correct part of the forum.

Many thanks


(Sally Burbage) #127

Hi Sumera,
I’m so sorry that you too are going through this.
I am new to this too but have found a Facebook forum called ‘neuroblastoma support group. You are not alone ask away.’
Its a very active group and I’m sure you will get plenty of helpful replies if you post on there.
Good luck, love Sally

(Sally Burbage) #128

P. S. I am in the uk too