Tommy’s Neuroblastoma Treatment

Tommy Paul Quinn, our car loving, cheeky 2 year old boy.

Since January, Tommy had been sick, spiked temperatures and generally not feeling himself which we put down to a viral infection. He was waking through the night which was also unusual for him.

During the Easter weekend, Tommy was not himself, not eating or drinking and seemed very clingy and lethargic. I contacted NHS 24 for advice and we were given an appointment for OOH due to reduced urinary output. We went to the RHSC following this appointment due to his age and having no paediatric Doctors on site.

We were assessed and sent home with worsening advice. When Tommy woke up in the morning, he vomited again and we took him back to A and E at the RHSC.

We were assessed and admitted to the Clinical Decisions Unit and advised it could possibly be constipation and a registrar came to review him. Her face immediately changed when she felt his tummy. Things snowballed quickly after this. Bloods were taken, IV access obtained and a Consultant was on the way to see us (it was 10pm so we knew this was something which obviously could not wait).

The Consultant felt Tommy’s tummy and booked an ultrasound scan for the morning. She advised us that the mass is unlikely to be constipation and given his age and other symptoms, it is likely to be something nasty. It never crossed our minds it would be the C word.

Tommy had his scan the next day. The radiologist left the room and returned a while later advising the Consultant would see us in the ward. We knew then something serious was going on.

On our return to the ward, our world was turned upside down. A Consultant met with us who advised a mass has been discovered in his tummy and it is likely cancer, however, no other information re type etc was available as only an ultrasound had been done at this time.

We then met with Drs from the Schiehallion Ward who advised Tommy would be moved shortly for further tests.

Over the next two weeks, Tommy had his bone marrow sampled, MRI, MiGB scan and a CT scan. We were then told the devastating news that Tommy has Stage 4 High Risk Neuroblastoma, a very aggressive and rare childhood cancer with a 50% survival rate. Tommys primary tumour was on his adrenal gland with secondary manifestations in his lymph nodes, thorax and spinal cord.

More tests were carried out on Tommy’s heart, hearing and kidneys before having a central line inserted to start a gruelling induction chemotherapy regime consisting of 7 volatile chemotherapy drugs with horrible side effects. As well as suffering the effects of the chemotherapy, our little lion man has undergone numerous bone marrow procedures, blood transfusions, CT and MRI scans, nuclear MIBG scans, G-CSF injections, stem cell harvest, tumour re-section and his first intensive chemotherapy and stem cell transplant.

He has amazed us all with his resilience and strength, keeping his cheeky smile and mischievous nature and making us so proud of how he is coping daily and taking it all in his stride.

Tommy has already been through so much, and he is not even half way through his treatment with a further intensive chemotherapy, stem cell transplant, radiotherapy and immunotherapy still to come.

His treatment will last at least 18 months.

Our little warrior has also lost his hearing (specifically high frequency) which has resulted in him having hearing aids fitted. This is a direct result of the chemotherapy used too try to reduce his tumour.

Even after completing this intensive course of treatment, there is still a very high risk that Tommy could relapse and his cancer could come back which is frighteningly common with High Risk Neuroblastoma. Should this happen, Tommy’s chances of survival would drop drastically to 5-10%.

Unfortunately we will not know if Tommy’s cancer has went into remission until his end of treatment scans. If he does not manage remission, the treatment options available on the NHS are reduced and often require families to travel to other parts of the UK which they would need to self fund.

There are also a number of clinical trials available outwith the UK that Tommy could access should his cancer not be cured at the end of treatment which we would need to self fund. Some of these treatments can be in excess of £250,000.

The money that we raise will go towards getting Tommy any treatment he needs, improving his quality of life and supporting him and his family during this time.

We want to give Tommy the best chance at beating this awful cancer.

Any money not used to treat and support Tommy during this time, will be gifted to Neuroblastoma UK and other charities that have assisted us during this dreadful time.

Every penny counts.

Lots of love, health and happiness, David, Nicole and Tommy xx