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. Heās 18 months old now. Walking/talking/eating. Heās not out of the woods yet but chemo has given us 9 months that we just wouldnāt 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.
Thanks Mark, it means alot that you took the time to read and reply to me, it bolstered me up. Iām 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 wasnāt 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
Hi Sumera,
Iām so sorry that you too are going through this.
I am new to this too but have found a Facebook forum called āneuroblastoma support group. You are not alone ask away.ā
Its a very active group and Iām sure you will get plenty of helpful replies if you post on there.
Good luck, love Sally
Hello! My name is jonas and out of the blue my 4 year old daughter-Nika was diagnosed with neuroblastoma about 6 hours ago. Tomorrow we will be going to Minneapolis Childrenās hospital for scheduling surgery and chemotherapy. Tbh honest Iām furious, sad, crushed and confused. I quit my job last week to start my company, my wife accepted a new position at work and we were starting the process from moving from Minneapolis to Charlotte. I donāt have your guys knowledge or know the lingo, tomorrow and over the next couple days Iām assuming the doctors will run tests and give us exactly whatās going on- stage and whatnot. I appreciate any tips or really anything I should be doing besides crying and trying to find out what We are dealing with. Thank you!! Tbh Iām not happy Iām here but Iām grateful.
Hi Jonas,
This is a very raw time for you but there are many people on this forum that have been where you are and understand how devastating this can be. One day at a time. Get a notebook and write down as much as you can. That helps to make sense of it later on.
Laura P
My 10 year old was diagnosed w stage 4 out of the blueā¦ he just had low grade off and on fever w limb pain for 2 months, the pain or fever never lasted more than a day or 2 most of the times . One time be had hip pain and limped. Doctors suspected juvenile rheumatoid arthritis and suggested a mri scan when the radiologist spotted the tumour. I had spread from adrenal glands to nearby lymph nodes, bones and bone matrow.
We are in Chennai India . Started the Rapid COJEC treatment and just finished 3 rd chemo.
Haemoglobin of 7.2 and rbc of 2.66 remains a source of worry. He got blood transfusion post chemo. He has had no pain since diagnosis - since before chemo also! I still expect to wake up and find all this a nightmare. When he is home he is his usual energetic self splitting time between cricket and Xbox and school work / music once in a while. He is a budding violinist.
I also intend getting 2nd opinion from MSK post the mid chemo scan. He was mycn -ve.