A Born Fighter
Brock arrived in a hurry born at 27 weeks.
Brock was in a huge hurry to enter this world, there was no holding him back! Born at 27 weeks, weighing just over 1kg, he was the size of his dad’s palm.
After 3 months we finally got to take Brock home to be with his sister and 2 brothers. A time of mixed emotions for us, we were excited to finally have him home, but also scared. He had to wear an alarm attached to him 24 hours a day as he would sometimes forget to breath, his alarm going off to warn us.
Trust A Mothers Instinct
Something wasn’t right, so I fought for answers!
Brock had a great appetite and there was no holding him back as he slowly met all his milestones. He was a fantastic little ‘boys boy’ with a great personality, he loved his family.
When Brock was around 11 months old, something wasn’t right. We noticed his tummy was an odd shape and always seemed bigger of a night. He started vomiting late in the afternoons, so I took him to doctor after doctor looking for an answer. They made me feel like I was crazy when explaining what was happening.
After a few months the vomiting and symptoms got worse, I was at my wits end. I decided that I needed to seek another medical opinion outside of our home town, Cairns. I booked a flight to Sydney and planned to stay with my mum for support while we sourced another opinion
We had an answer, after a visit to the ED. Brock was diagnosed with a Rare Disease.
Unfortunately, two days before we were to fly to Sydney Brock was rushed through the Emergency Department at Cairns Hospital. Brock had fainted at home and the vomiting was really bad.
After numerous blood tests and scans we were initially told that Brock had a tumour pushing his insides out, their explanation for the odd shaped tummy. In that moment our lives were turned upside down as the thought of our baby boy having cancer was just too hard to fathom.
After what felt like a lifetime of waiting, the doctors returned to report that it was in fact ‘Nephrotic Syndrome’ not a tumour as they had first thought. This is a rare condition where the kidneys leak protein into the tissues around the body.
I was relieved to finally have a diagnoses, but not fully understanding what this meant for his future. The plan from here was to put him on steroids and immune suppressants to help control the disease.
Two Rare Diseases
Still not 100% we jumped on a flight for more answers.
We continued his treatment for 6 weeks, but we were not happy with the results, in my gut I knew something wasn’t 100% right.
Once again we booked flights to Sydney, this time we made it. Brock had come down with a fever, so we went straight to the Westmead Children’s Hospital.
Brock had more tests and this is when we were shocked to find out that he had ‘Autoimmune Hepatitis’ another rare disease.
In true Brock Style, the little fighter ‘just got on with it’ and took his medicines every day. This new treatment plan kept his two rare diseases under control for a few years.
Long Hospital Stays
We spent so much time in hospitals the staff became our 2nd family.
Unfortunately, as he got older the disease there were a lot more flare ups and a of time spent in hospital, the hospital staff became our family.
In 2016 Brock’s diseases took a lot more to control so once again we went off to the Westmead Children’s Hospital for a second opinion thinking we would be down there for around 1-2 weeks well in that time Brock got sicker and we ended up there for 8 weeks and when we came home he was still pretty much in hospital every day, we managed to bring him home Christmas Eve and Christmas day he only woke for 2 hours so I went back to researching different places overseas that may be able to help him.
Renewed Hope, a Family Holiday, and a Fundraising Campaign
I found the Mayo Clinic in America, they do a lot with rare diseases and other things. I contacted them, and they got back to me a few days later asking for Brock’s medical records for the last two years, so I applied for the records from 3 different hospitals that had been involved in his care. When the records turned up there was over 4000 pages so I sent it to them and a couple of weeks later we received an email back to so I needed to condense it as it was to much for them to read.
This period was a very busy period for us as we were going on a Family holiday on a cruise ship so I had no idea how to condense it as I did not want to leave out anything that could be important so on a A4 piece of paper I wrote his name, date of birth, the diseases he had and all the medications he was on and I emailed that to them.
So away we went on our family holiday and when we returned there was an email to say we had been accepted into the Mayo Clinic we were all so excited about that. We started looking at fundraising ideas so we could raise the money to get over there.
A Routine Trip
Brisbane Hospital for a Port Change, he took a turn for the worse.
Brock was back to daily visits to the hospital as his kidneys were constantly leaking. In this time his port started mucking up about ½ way through treatment so we organised to go to Brisbane to have a port change.
We arrived in Brisbane on the 22nd May 2017 and we have lots of doctors come and see us etc and then they said they would be doing the port change towards the end of the week, well on Thursday night Brock starting vomiting which was nothing unusual for him but it really only happened when he was very swollen and he was not that enlarged but when I was showering him he all of a sudden turned yellow and I called for the nurse and she look at him and contacted the doctors.
A Parents Hope
Life Support, Transplant, a normal life?
The doctors said give him a bag of fluids to try and get him to pass urine. By 11.00pm Brock had deteriorated and was screaming his back was really sore so by 1.00am he was put on life support and into induced coma this was the scariest time of my life.
It seemed Brock had his two major organs, his liver and his kidneys, stopped working. Even though his liver, from blood test, was producing the best results in years. At this time Brock started dialysis and he was a very yellow boy. On Saturday the 27th May Brock was put on the emergency transplant list and a few hours later we had one so Brock went to theatre late that night and had the transplant.
A few hours later we knew the transplant was working as he was coming back to a normal colour and we thought after this that Brock could be a real kid and run, play and ride his bike like the rest of kids his age.
He fought until the end
Shattered Dreams, Broken Hearts, in the Arms of the Angels
This dream we had of him being a “normal” boy did not last long as the new liver started to break down again and he went back to theatre to have a wash out etc so they could try and find what was going on. Brock ended up back in liver failure and also a very bad infection in his blood. Brock was having lots of blood products to keep him going but he never gave up he kept the fight going.
Even though on the 9th June they started giving him less blood products, so in ourselves we thought he was doing really well, but unfortunately on the 11th June 2017 we needed to turn the machines off that were keeping him alive, and even then he still did not give up, he was breathing on his own for a few minutes before he stopped breathing altogether.
Our boy had been taken by the angels.
“Brock’s fight might have come to and end on this earth. But we, his family, will continue to fight in his honour, by helping other families of children with rare diseases.”