On February 10th 2017, we were given the most devastating news that our beautiful baby boy, Jesse had a brain tumour. Within hours of receiving the news we were in an ambulance being rushed to Addenbrookes hospital in Cambridge where Jesse was operated on for 7 hours through the night. We sat down with a paediatric oncologist that night who was talking us through dealing with a child with cancer. It was like information overload. We could not really understand what we were hearing. Our world had literally been turned upside down in hours.
Jesse had only appeared unwell for two weeks prior to his diagnosis. His symptoms seemed to come on fast. Now when we look back, perhaps there were earlier signs, but at the time we just thought that Jesse was a normal baby, sometimes throwing up his milk.
The next morning when Jesse came out of surgery we met the surgeon who informed us that Jesse’s tumour was extremely aggressive and the pressure in his head was so high that they were certain they made the right choice to operate that night.
It was from this moment that we seemed to board the rockiest fastest rollercoaster ride in the world. The level of emotions were uncontrollable.
The histology results were in back within a few days and sadly the outcome couldn’t have been much worse. Jesse was diagnosed with an Atypical Teratoid Rhabdoid Tumour; one of the rarest forms of childhood brain tumours. The tumour had spread into Jesse’s brain stem and eaten through nerves 9, 10 & 11 and damaging nerves 4 and 7. All the important nerves involved in swallowing and protecting the airway. Jesse had left sided facial palsy and we were told it was unlikely that he could hear in his left ear.
As parents we of course did not fully appreciate the extent of what we were hearing. Whenever you hear the word cancer you believe treatment can be given using chemotherapy and radiotherapy. Most people’s knowledge of these things don’t go beyond the fact that they exist unless you have lived in a world of cancer. We slowly began to learn that Jesse couldn’t protect his own airway and his swallow was deemed unsafe. He therefore was fed only through an NG Tube and it was indicated that it was likely that Jesse would never eat or drink again.
Over the days after Jesse’s surgery more and more conversations were had with different doctors who advised that they did not believe that they could cure Jesse. The tumour was deemed too aggressive and the damage that it had already caused meant Jesse could not cope with chemotherapy. We learnt that it is not safe to carry out radiotherapy to children under the age of 3 or 4 as its too damaging to the developing brain.
It was at this point that you realise that life only truly gets put into perspective when something devastating happens. But at 9 months old our baby boy knew nothing else but to smile and play.
Just 9 days after major brain surgery Jesse was amazing the doctors who called his strength remarkable. He didn’t understand our heartbreak or our tears but he understood how to show strength, fight and his beautiful smile. He never stopped, through his entire journey, Jesse smiled.
Over the next few weeks, we learnt how to care for Jesse, particularly caring for his unsafe airway and his inability to swallow. We made it our priority to learn everything we needed to, to care for Jesse. We were told that treatment wouldn’t be fair to Jesse, the tumour was too aggressive and that he only had approximately 6 weeks to live. It was always our priority that we ensured that Jesse didn’t suffer, but the decision to not provide any treatment at all was not one we could make; so we agreed with the doctors to take Jesse home on oral palliative chemo. We vowed at that moment, that we would do everything in our power to make Jesse’s life the best it could possibly be.
Sadly we never made it home, after a short stay at EACH Hospice; we were transferred to the Norfolk and Norwich Hospital. Jesse had developed pneumonia from aspirating on his sick. It was here where we spent most of the next 3 months. We developed strong relationships with staff members who helped hold us up, together with our friends and family in our time of need.
Jesse endured 3 more operations, to insert Hickman Lines and a Peg J tube, countless needles, tests and procedures, but his smile never faulted. He had his first birthday on the ward, and he attended our wedding, where he was the star of the show. Nothing stopped us from creating memories, but on 18th June 2017, 128 days after diagnosis, Jesse passed away in our home, surrounded by family.
People often credit us for our strength during our whole journey, but the truth is, it isn’t strength. When times are tough and you are faced with adversity you cope. Why? Because you have to. Our boy needed us, he was just a baby and he didn’t understand.
We never imagined telling our beautiful baby boy that it was ok for him to leave us, but we did because that was the right thing to do. So now we vow to help others in his memory, with him watching over us.
For anyone who knew Jesse they knew he was a bright, courageous, happy, funny, smiley little boy who adored people. He was curious about life and had a warm caring heart that was obvious from the moment you met him. He would have grown up helping people.
We will never see it as Jesse losing his battle. He never really had a battle to win. Jesse defied cancer with a fierce determination to live as much and as long as he could, and he smiled the entire time. It feels like nothing quite went his way and there was nothing that could have kept him with us, but that did not stop him and we are so, so very proud of him.
We miss Jesse more than words can say, and our hearts will remain forever broken, we long for his touch, to hold him tight and to see his beautiful face, but he’s still with us, he’ll always be with us and he will help us help others.
In setting up Jesse’s Anchor, we vow that we will forever champion every parent from this day forward that you know your child better than anyone. Trust your instincts and don’t ever question yourself despite what those around you are saying. Lean on people for support, make memories and cherish the time no matter where you are. And we hope that we can be there for you too.