Jacob's medulloblastoma brain tumour story

An ear infection

Just before Jacob’s second birthday he started to regularly fall over. Then a month later, at Christmas, he was unwell but we couldn’t quite put our finger on what was wrong. By the New Year, the doctor had diagnosed an ear infection so, Jacob was put on antibiotics. He completed the course of antibiotics and appeared to be more ill than when he started. Jacob’s head tilted to one side and when he walked he couldn’t walk in a straight line, he veered off to the side. We knew he was ill but we could not work out what was wrong so we took him back to the doctor. This time he was seen in-person by the doctor (as this all happened during COVID lockdown). The doctor informed us that he couldn’t see anything wrong so it must be an inner ear infection and prescribed another dose of antibiotics. On the last day of this course, Jacob started to wake up in the morning and the first thing he did was be sick or heave as there wasn’t anything in him to throw up. Once again we called the doctor. He said there is nothing he could see so it must be a viral infection and we had to wait it out.

Jacob slept for 23 hours

Throughout the next week, Jacob got more and more unwell. The sickness was not just happening in the morning but gradually it got more throughout the day until he was completely wiped off his feet. He wasn’t able to keep food or drink down and he slept 23 hours out of 24. This was unusual for Jacob as he had never been a child that liked to sleep.

A week after the last call to the doctor I called him again. He said there’s nothing he could do so just keep an eye on him for a few more days to see if he improves. The doctor called me two days later to see how Jacob was and I told him we were not happy waiting any longer. Jacob had been sick for almost ten days straight, he was no longer himself and wasn’t having any food or drink which was worrying me. The doctor asked me to bring Jacob to see him and pack an overnight bag just in case. As soon as the doctor looked at him he said wait whilst I type up a letter and told me to take Jacob straight to the children’s ward at the local hospital where they will be expecting us.

Our first trip to hospital

Jacob was seen by a doctor within an hour of arriving at the hospital. The doctor advised that he wanted to send Jacob for a MRI as soon as possible but it had to be a specifically trained radiographer so he needed to investigate when one would be available. Two days later, Jacob was in for his scan. He was in the machine for almost two hours. They had to pull him out half way through to inject dye to check how fluid was flowing and put him back in again. At this point we knew something was very, very wrong.

A few hours later, I was pulled into a room whilst a nurse sat with Jacob which is always a bad sign. They told me a tumour had been found and Jacob needed to be blue lighted to the children’s hospital immediately as the surgeon was worried Jacob wouldn’t make it much longer without action. Due to COVID, only one parent was allowed at the hospital at one time so this was all incredibly difficult as we were facing it alone.

The brain tumour surgery

The diagnosis of medulloblastoma, a type of brain tumour was the Friday afternoon and Jacob’s surgery to remove the tumour was scheduled for the Monday. He was kept at the hospital to be monitored but on the Sunday he was so ill that he was rushed into surgery to have a brain drain inserted. The tumour had caused Hydrocephalus and Jacob was not likely to make it to the scheduled surgery. He was in surgery for four and half hours. We were not able to pick him up for a cuddle for the next week as he could not be moved due to the drain. The next day, Jacob went to theatre to have his tumour removed. He was in for 11 hours and the surgery was a success, the tumour had been removed. The problem was the cancer had already spread due to the brain fluid carrying it around the brain and spine. The next surgery was that Friday when Jacob had his central line fitted and the drain was replaced by a ventriculoperitoneal (VP) shunt. We could cuddle our boy once more.

The steroids made Jacob very hungry and very angry so this was difficult for us as parents to manage. The stress and pressure of watching your son be so very ill with there being nothing you can do to help is awful and doing it alone makes it worse due to not being allowed visitors.

Five rounds of chemotherapy

Chemotherapy was then scheduled in for a few weeks later. Due to the gene in Jacob’s cancer, there was no time to wait for him to recover from surgery. He would start the Headstart2 program three weeks after his surgery. In these three weeks, the cancer had started to re-grow so Jacob was as ill as he was prior to the surgery. Jacob completed his five rounds of chemotherapy on a three week turn around. Week one would give chemotherapy; nine drugs over seven days. Week two Jacob would become poorly from the chemotherapy and week three he would get better hopefully with enough spare time for us to get home for the weekend before it started all over again. We had a few issues along the way due to illness. Jacob had to stop the Vincristine a dose earlier due to the affect it was having on his eyes and left foot. Also, during the first course of chemotherapy Jacob had to stop before the last drug was administered due to the tumour re-growth. Jacob needed steroids again instead to help him.

The first two rounds of chemotherapy Jacob really struggled with the side effects kicking in on days nine and ten of the cycle. So much so that on the second round Jacob was on watch for intensive care as he was so ill. Cycle three to five he flew through with a temperature for only two or three days and the mucositis put him off his food but he dealt with it like a pro. He had a stem cell harvest after the first cycle ready for high dose which was round six. We were advised Jacob would be incredibly ill and would be in hospital for around six weeks depending on how he improved.

“Strong as an ox”

By this time he had only been home a hand full of days so not seeing his family was hard for him and it was tough for us parents too as we were separated for such a long time. The cycle started and we were advised not to touch him skin on skin which is impossible. If your baby wants a cuddle you are not going to say “wait there whilst I get head to toe PPE”! However, Jacob appeared to fly through the high dose. He became under the weather and gained a high temperature which was usual and he was on a food alternative whilst his mucositis was so severe but overall he was not nearly as ill with it as the doctors expected. They kept telling me to wait, it will come, but he remained incredibly stable and chirpy. He was as strong as an ox our boy. He had his stem cell transplant and his breath smelt like strong sweetcorn for a few days which was odd but he had had a reaction to either the stem cells or the food substitute. After three weeks, he was well in himself but couldn’t come home as his blood numbers would not rise. Jacob had to have some daily injections to boost his bloods and eventually a week and a half later he was well enough to come home.

The cancer returned

Jacob had a lumbar puncture, which came back clear, and a MRI which showed there was the tiniest bit of cancer left – a spot on the brain and a spot on his spine. This meant he would have to have radiotherapy after all. Due to him being under three years old, the hospital were trying to avoid it. It is proven to be the most effective treatment in brain tumours but Jacob wasn’t old enough! If Jacob survived, as he aged he would become more and more disabled due to the after-effects of the radiotherapy. On the NHS, there is no proton therapy which is more direct and causes less long term damage in these cases. After radiotherapy was decided, Jacob was fitted with a mask and had six dots tattooed onto his torso for him to be lined up during the treatment. However, the treatment could not commence until Jacob’s blood counts were high enough and they were taking a long time to reach where they needed to be.

A month after Jacobs MRI, he started to be sick. We rushed him back to the hospital where he was given anti-sickness medication and fluids. The next day he had improved so he got discharged. Later that night, the sickness recommenced so early the next morning we returned him to hospital. At this point the consultant was concerned and Jacob was scheduled for another MRI the following day. The hours that followed the MRI was a blur. Due to the specific gene in Jacobs tumour, which caused rapid growth, in a month Jacob had gone from barely any cancer to a complete spread of cancer across his brain and spine. It appears the cancer reacted well to chemotherapy but as soon as that chemotherapy stopped, the cancer returned with a vengeance.

End of life care

The consultant pulled both me and Damion into the office and told us there was nothing they could do and we needed to go home and enjoy what time we had left with him. We couldn’t go home though as Jacob’s sickness couldn’t be controlled so we were in the hospital for another week. We finally managed to get home and five days later Jacob was too poorly so he was admitted to a children’s hospice to be looked after.

We chose the hospice rather than the hospital as we needed to spend the time together as we had lost so much. Family could visit at the hospice too so Jacob got to see all of his favourite people which he loved.

When we were told that his diagnosis was terminal, it torn us apart. That last bit of hope we had was snatched away and the reality of Jacob leaving us so soon was heart-breaking.

On 12 October 2021, the cancer took Jacob.
Dani and Damion, Jacob’s parents, July 2022.