The Shock Of Finding Out My Autistic Son Has A Brain Tumour

Two months ago I took my non verbal ten year old for a routine MRI under general anaesthetic. It was his fourth one in two years and we all knew the routine. Isaac is autistic with learning difficulties but his love of toy food and his enjoyment of his iPad meant we had found ways to support him through what was always and long and difficult day.

Very few autistic children ever need an MRI. Unfortunately Isaac also has a genetic condition called Neurofibromatosis Type 1 (NF1 for short) which means his body grows tumours on his nerves, and so two years ago an MRI was requested due to his inability to communicate pain or changes that were viral in monitoring his condition. Isaac’s neurologist wasn’t expecting to find anything suspicious so it came as a shock when three weeks after his first MRI I received a call from her to come up and see her the following day with the added request to ‘bring someone with you if possible.’ That gave me some idea that it wasn’t great news.

Two years ago we found out that Isaac has a developmental eye condition in his right eye which meant he very likely had little to no vision in that eye. They also discovered that his left eye had a tumour on the optic nerve which had been discussed with an oncology team and would be monitored. No-one wants their child discussed by an oncologist but I left feeling positive that at least there was no imminent treatment required.

Isaac’s next MRI six months later found more abnormalities but I was assured these were ‘consistent with NF1 and will continue to be monitored.’ Meanwhile Isaac continued to grow and develop and seemed well.

His next MRI was late due to his neurologist being on long term sick leave. By this point Isaac had rather suddenly started having seizures, first for a minute or so then very quickly turning into 4 and almost 5 minutes long with full shaking, vomiting, thrashing and foaming at the mouth. They were terrifying for everyone. It didn’t bode well for the results of his scan which showed an ‘emerging tumour’ in his right frontal lobe which was almost certainly causing his seizures. It took months but finally we found a medication which seemed to help, though it made Isaac very weak and caused other side effects that I was reassured would settle.

That was a year ago this month. Isaac’s neurologist went on to retire and there was a long wait to be seen by a new neurologist. He referred for another scan as this hadn’t happened and thus it was 9 months before Isaac finally had his next scan. This takes us to two months ago. By this point I was slightly concerned as Isaac had never really picked up since last summer and in fact he was more tired, his walking was worse, he was vomiting randomly and seemed very lethargic.

So here I was in the same day ward for the fourth time as my son yet again had general anaesthetic for a procedure that enabled us to gain more knowledge of what was going on in his body. What happened next turned our whole world upside down.

Three weeks after the MRI I had a call one Thursday evening while my children were eating dinner. It was Isaac’s neurologist apologising for the delay in me getting his results and saying that this was due to medical meetings to discuss his scans and that unfortunately they had found something concerning. My son had a growing brain tumour. A medical team including an oncologist and a neurosurgeon had been discussing my child without me ever knowing.

That night I was told my son needed an operation for a brain tumour biopsy and that the neurosurgeon or oncologist would call with a date to speak to me further and tell me more. Due to Easter weekend and difficulties scheduling a time when both the oncologist and surgeon were available it was two weeks later before I found myself in a cancer ward of my local children’s hospital being shown this scan of my son’s brain tumour and being told that he required a repeat scan urgently followed by an operation to remove some of the tumour for biopsy before possibly needing chemotherapy or radiotherapy. All the time my son was at school as if it was all just my imagination.

We then waited for a call and life seemed to be in limbo. The hospital struggled to find a date so at one point they wanted Isaac admitted indefinitely so that he could take advantage of any cancellation right away. Being autistic, and having an autistic sister and dad this would have made life impossible so it was a huge answer to prayer when I had a return phone call to say someone had cancelled and a day could now be set for Isaac’s repeat MRI.

He had that just 9 days ago. It showed his tumour had grown again so at 3pm that day I had a call to say Isaac was to be admitted to hospital the next day. While I amused and settled my complex needs child the surgeon explained that due to the position of the tumour and the possibility of needing a repeat operation he would need to carry out a much larger operation called a craniotomy and Isaac would be in surgery for some hours. He could not say wether he would recover, wether he would walk or play again or if he would even survive surgery. Signing permission was terrifying.

Isaac had a six hour operational to cut his skull open and remove some of his tumour for biopsy just a week ago. When he finally returned to the ward he would not regain consciousness and it was touch and go throughout that night if he would make it. It was Saturday morning before he woke, a much different child to the one who had went to theatre the morning before.

Isaac got discharged two days after his operation. Having him in hospital and juggling care for two complex autistic children was very very difficult and my whole family went through extreme trauma. It took until two days ago before Isaac could walk and stand unaided. His appearance changed drastically due to extensive bruising. He needed fed for several days as he could not even feed himself.

A week after surgery and he is recovering well. He can stand, walk, use his iPad and say two of the three words he had previously. He can self feed, see from one eye and is aware of much more than everyone expected.

In five days time we are due to get the results of his biopsies. He could face a repeat operation to remove the tumour or chemotherapy or radiotherapy. Or there may be nothing more they can do.

Life has changed significantly. It’s been a huge shock for everyone to find out Isaac had a brain tumour and then watching as he went through extensive and serious brain surgery.

The one blessing of it all though is that Isaac lives in the moment. He wakes everyday and takes on whatever comes his way with a determination, a tenacity and a resilience that assures me that regardless of his extensive communication and learning difficulties his love of life (and love of lifts) will see him through whatever the future has.

Until Wednesday I don’t know any more.

Tonight I am eternally grateful to kiss my son goodnight and hold him in my arms.

19 thoughts on “The Shock Of Finding Out My Autistic Son Has A Brain Tumour

  1. I am so glad Izac is back home and recovering well but what a shock for you all. I have been thinking of you a lot since reading your last post. I will be thinking of you all over these next few months too. I am sending hugs and love to all xxx

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  2. So much love to you all. Isaac and Naomi are fortunate to have such a wonderful Mummy, and you are blessed to have them. You are in my heart and my thoughts every day. Keep strong, my friend.xxx

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    • Thank you. Writing it all down made me really realise how i tense it has been lately. I wish we could slow down. But with just five weeks left until summer holidays and results on Wednesday there’s little chance of that.

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  3. Praying for you and your family! I, too, have both a son and daughter with autism. I can only imagine how difficult this is for you! Sending love and hugs!

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  4. Gosh – what a shock for you all. I don’t know what to say; anything I might say would seem trite. You have a wonderful son and he has a wonderful mummy. I really pray that things improve for you all. Some people do take longer than others to get over anesthetic; my husband has Asperger’s and he took longer than other people to get over his general anesthetic so it may be connected to the condition. I think that there are a lot of people out there who will be rooting for you and we will keep you in our prayers. xx

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  5. Thinking of you and your family at this difficult time. So glad that Isaac is recovering well. Reading this post really highlights the stress caused by constantly waiting to see health professionals. I can’t even imagine how difficult it was signing the permission for surgery, I was scared enough signing one for myself when I had emergency surgery and that’s nothing compared to doing it for your child. I am in awe at how well you are managing looking after your family xxx

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  6. Jeez. I was terrified when I thought my autistic (then) tween had to go under for oral surgery, because much of the anesthesia stuff is still an art rather than a science.

    I try to trust the universe knowing full well that things won’t go my way. Still, though. When I hear about a child upon whom numerous disorders are stacked, I can’t help but shake my fist at the powers that be. (Look, I am doing it right now!)

    Best wishes for your son’s healing. Sounds like his mom has the hope part covered.

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  7. I just got my abdominal MRI scans back from the CHLA and the tumors are very small and not cancerous. I still need my brain and spinal MRI though. I have thoughts and prayers to your family. In the autism community that pro-vaccine/anti-vaccine nonsense makes people not have empathy for those with genetics disorders like Neurofibromatosis.

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