Harris’ Journey

Harris RossOur treasured Harris was born 14th April 2009. He was so healthy and alert from the start.  Harris loved his food and only needed a short nap during the day. He didn’t want to miss a thing!

Harris was always so beautiful, sparkly and full of character.  He met milestones super early and loved interacting with everyone. Harris just loved life and made the most of every activity. He could go underwater at swimming and his music teacher always commented on how much he loved the class.  He honestly made everyone smile!

Harris RossWhen Harris was 7 months old, we noticed that he had developed a kink in his neck, wasn’t sleeping so well, fell over during tummy time, was unusually irritable and had a ‘wobbly head’.  My mother’s instinct seemed to make me think of a brain tumour but this seemed such an awful possibility.  A week later, I took our baby to an appointment with two GPs who said they were baffled and we should come back the following week.

The next week (Monday), we met two other GPs during separate appointments.  Our beautiful boy was now sleeping throughout the day and staring ahead on wakening.  Every time we tried to feed Harris he was sick and he hadn’t eaten anything at all since Saturday.  I explained this wasn’t like our ‘Bubs’.  The doctors thought beautiful Harris could have a ligament problem or bug.

Harris RossBy Tuesday, we were still concerned so we visited a fifth GP who eventually got Harris admitted to our nearest large hospital for dehydration.  On the paediatric ward, Harris was nearly discharged on a number of occasions.  Over the next couple of days, our subdued and treasured baby had numerous urine and blood tests which all revealed nothing, whilst we kept insisting our baby was so ill.  We were told that the ‘biggies’ had been eliminated – clearly not, we were to find.

Harris started sleeping almost constantly, still wasn’t feeding and I noted a concern to the doctors that his breathing seemed to stop but resumed when I shook him.

Harris was due to get a scan or lumbar puncture the next day (Thursday).  When the night doctor came on we kept asking for him to tell him that Harris’s eyes were doing something unusual now, that we were concerned about his breathing and reiterating our same concerns.  Eventually, he got a scan arranged for the Wednesday evening.

Harris RossHarris was diagnosed with a brain tumour and needed transferred by plane to an even bigger hospital. We were told that our precious baby’s life was in danger ~ our absolutely worst nightmare.

Whilst the retrieval team was being sourced, we were becoming increasingly concerned about Harris’s breathing which was now stopping regularly.  We were left alone whilst this kept happening.  I’d shake Harris to get him breathing again whilst my husband would run out to get a doctor – terrifying.  Harris also started to have seizures and lost movement down one side.  The doctor eventually ventilated our baby after we asked for this to happen a second time.

We kissed our baby with tears streaming down our face as we left to make the 3 hour journey to Edinburgh so that we could be there for him on his arrival.

In Edinburgh, now Thursday morning, we were told by his neurosurgeon that Harris would need a ‘bubble’ inserted into his head immediately to reduce the pressure on his brain and to save his life which was in imminent danger.  During a break from surgery, where our baby got an MRI scan, we got to see him briefly before he was whisked back into theatre to have the tumour removed.

Afterwards, in intensive care we were told that we needed to now wait to see if Harris could breath, move, see…

We added photos around his cot and told stories about what our amazing son was like so that every person caring for him would fall in love with him like everyone did and they’d do their best in caring for Harris. Thankfully, Harris surpassed all expectations and was leaving intensive care to go onto a ward within days, although he was not impressed at having a feeding tube through his nose and would whip it out in seconds!

Harris RossJust days later, Harris was diagnosed with Medulloblastoma, an aggressive brain tumour and horrifically, Harris’s showed itself to be particularly aggressive under the microscope.  Two weeks later, Harris started chemotherapy and quickly lost his lovely blonde hair.  The chemotherapy made him sick, he lost his appetite, he got that ‘chemo colour’, but with each cycle Harris seemed to fight back quickly and look forward to engaging with all the extra people that the ward had to offer! During his time in hospital, Harris continued to meet milestones and learnt to clap, wave, throw, dance and he loved to shout ‘mum’ or tell us that a lion says ‘grrr’.  I can’t wait to hear him say mum again.  He really is our hero.

Harris RossHarris spent Christmas day on the ward, going for a spin on his new bike, waving to everyone like a little celebrity!  Even during his bone marrow collection, or getting one of his transfusions, Harris was happy playing, watching Barney or the Wiggles, or sharing a book whilst cuddling and babbling to everyone.

We were elated when an MRI scan during treatment looked hopeful that Harris was on the right course of treatment. However, during his last, intense cycle I had that mother’s instinct again and noticed that he had the slightest kink in his neck and his scar area looked marginally swollen. I prayed I was wrong.

All the follow up tests began with Harris flying through them all – his sight looked fine and the squint that he had developed was almost away, his hearing was perfect and his organs didn’t appear to have been damaged with chemotherapy!  He only had one major hurdle to pass before being told that he was in remission and then he would be able to go home for the first time in several months.

However, our worst fears were confirmed when an MRI showed that Harris did indeed have another tumour and that it was inoperable. At 14 months old, Harris couldn’t have full radiotherapy but focal radiation was a possibility.  We spent the next week debating with our doctors and a team in America about which treatment to go for. Amongst others, we queried proton therapy, radio frequency ablation and cyber knife technology as possible hopes for our baby boy.  We decided to use British radiation as this could start soon and time was the biggest concern.  We would have taken Harris to any country, spent any amount of money, put up any fight if only we could have kept our little star.

Harris RossHarris had his mask fitted in preparation for radiotherapy and his oncology doctor sourced chemotherapy drugs that could be tried.

Just four days before radiation was due to start, the mapping scan brought further devastating news – there were more tumours and it looked like the cancer had spread throughout Harris’s head.  We were told that there was no more treatment that could help our beautiful son.

Harris was given a week, at most two, to live but he managed to fight on for two months. During that time, we tried to fit in a lifetime of memories and cuddles, whilst focusing on healing prayers and trying to be hopeful.  We took Harris to the zoo, Deep Sea World, the beach, play zones, swing parks and he was even allowed to ignore his central line to go swimming.

Harris RossWe have a photo of Harris swimming and I love it because it sums him up. He was so beautiful, brave and sparkly and he is probably the only one who can truly say that he did ‘his bit’ completely.  We have no doubt that Harris wanted to live as he loved life and truly fought, fought, fought.  We just miss him so much and are left heartbroken forever without the most precious gift that we could ever have been given.  We never wanted to stop holding him and pine for him endlessly.

Harris RossHarris’s late diagnosis leaves us with so many additional ‘what if?’ questions and I don’t believe that there is anyone who can truthfully say what difference an earlier diagnosis would have made. The outcome might have been the same but it might not but he would have certainly stood a better chance. If only love could have cured him…

5 Comments to “Harris’ Journey”

  • I find this so tragic, doctors these days give u pills and potions for so many minor things yet never listen when you know somethings wrong. God Bless wee Harris xx

  • Absolutely heartbreaking story. I am sitting here trying to control the tears down my face. It seems like Harris was the most wonderful little boy and I am so deeply saddened for his parents and extended family. I cannot imagine the hell they are going through and still going through dealing with this life without him. RIP little man….. till the next life. xx

  • What a tremendously brave little guy and so loved by his parents. Couldn’t help but cry reading Harris’ Journey.

  • After reading this story, I am honoured to be doing the tough mudder challenge 2013 to raise awareness and funds for star for Harris x

  • Beautiful parents and a beautiful little baby boy xxxx Tanya and Allan you have done your little precious angel proud xxxx

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