Jacob was a normal 5-year-old enjoying his first year at ‘big boy’ school in September 2023, playing with his friends and his little sister. This all changed when he had a fall in school and was taken to the doctors as he was sick and lethargic, he was initially diagnosed with a concussion.
This is when Jacob should have gone back to his normal life with us his Mummy - Nicole, Daddy - Anthony and little sister, Sophia.
Unfortunately, this was not the case.
Over the next couple of weeks, he deteriorated. Jacob was sleeping lots, struggling with his mobility and overall was not his fun happy, quirky self. Jacob had to take some time out from school and with that we visited Northwick Park hospital on 28th November where they gave him a CT scan.
The doctors came and spoke to us the words that no parent of a 5-year-old little boy should have to hear: - “There is a mass in his brain”.
The doctors told us at that point that Jacob would have to undergo an MRI immediately and potentially undergo brain surgery to remove the 'mass' seen on the CT.
We were transferred over to Great Ormond Street the next day to have these procedures and additional tests. After 2 hours of pacing the corridors of the hospital we were told that the mass in Jacob’s brain was actually inoperable as it was connected to his brain stem.
As you can imagine, the news was utterly devastating. The doctors explained that Jacob would still undergo brain surgery to have a shunt fitted into his brain to drain the cerebral fluid into his intestines to relieve the pressure building in his brain; therefore, relieving the symptoms. They would also do a burr hole and take a biopsy of the tumour to see if it was malignant or benign.
Jacob returned a few hours later, he was groggy and in pain. More family came to visit him the next day while he recovered in the high dependency unit at GOSH. Despite just waking up from a major operation, all Jacob wanted to do was go home and see “my Sophia”. It broke our hearts to see him so sick and upset. Jacob was allowed home on Monday 4th December while they waited for the biopsy results to come back in.
On Tuesday 5th December, back at GOSH we went to meet with the consultants and oncologists. Here we were given the horrendous news that the tumour was identified as a malignant DIPG tumour and there was no cure.
Doctors and scientists have been trying to find a cure for over 40 years and due to the nature and location of the tumour, it was completely impossible to remove via surgery. They would only give up to two rounds of radiotherapy as a palliative care option.
Within a week life with two healthy beautiful children changed forever. Jacob had been given 9-12 months to live.
Jacob started 13 rounds of intense radiotherapy on Monday 11th December 2023, so hopefully he could be well enough and spend Christmas in the comfort of his home surrounded by those who love and adore him most.
It was tough on the UCLH children’s ward for Jacobs first week of radiotherapy, he was on quite high dose of steroids which made him quite angry and always super hungry! He was also not enjoying being pulled out of bed for physiotherapy suffering from extreme fatigue. Leading up to Christmas we were back to UCLH for a second week of radiotherapy and a 5-night stay at ‘Paul’s House’ which is a kids vs cancer home from home.
By New year Jacob’s hair was falling out quite badly, a completely normal side effect from radiotherapy, but hard to witness.
It was a difficult month for Jacob with various episodes of sickness and painful headaches, trying to wean from dreaded steroids, maybe too quickly. We were admitted to GOSH and an MRI showed possible ‘pseudo-progression’ where the tumour appears larger from inflammation caused by the radiation.
We managed to squeeze in a holiday to Florida, but Jacob was very tired, and had to be pushed in a pushchair for most of it, including a lot of the park visits.
Another MRI assessment at the end of February showed a spot of necrosis (dead tissue) within the tumour and Prof Hargrave decided on a course of Avastin treatments to help ease this. The drug would hopefully reduce the size of the necrotic area and in turn allow the tumour to pull back and demonstrate that the radiotherapy had in fact done its job and ease current symptoms.
By mid-April Jacob was doing really ‘well’, the three infusions he had recently seemed to have done the trick with relieving some of the symptoms of the necrosis. He was able to walk by himself again and enjoy lots of activities like hydrotherapy, music therapy, going swimming and just enjoying time with his family and friends whilst more stable.
The MRI booked for the end of the month bought good results for early May and he was ‘stable’, what more could we hope for?.. other than to enjoy this period whilst Jacob was in better health.
Throughout May, again sickness episodes became more prominent, local hospital visits concluded a ‘gastric bug’ at one point until he was vomiting daily and the anti-sickness medication we had was changed. This did have an effect, but new medication bought about another emotional state in Jacob…not only that, he was also complaining of the occasional headache and pain in his legs.
We contacted Prof Hargrave at GOSH who decided to organise another scan urgently, the MRI scheduled for 7th of June was bought forward as an emergency for May 30th.
Almost immediately after the scan he came to see us, and we were told Jacob’s cancer had spread. He was now deemed clinically to be ‘in progression’ this was diagnosed as ‘widespread leptomeningeal disease’ of his spine, this caught us completely off guard. We hadn't read this could happen during our research. We were discharged and worked with the pharmacists at GOSH on the medicine plan that would have to control and manage his symptoms at home.
It’s horrific to type, but this was very much ‘end of life’ care for Jacob at this stage. The medicine that we were provided with, if effective at best, would improve Jacob’s mood and comfort to a hopefully almost ‘normal’ level.
Only 12 days later with deep sorrow, sadness and utter devastation we announced that Jacob’s journey came to a peaceful end at 22:16 on Monday, 17th June 2024.
He was in no pain and surrounded by those he loved and who loved him the most.
Our final farewell for Jacob took place on Thursday, 11th of July, an incredibly tough and emotional day, but a beautiful one.
You’re free now, Jacob. N’night, mate.
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