A quick recap …
My son Lochie was diagnosed on January 28 2018 with ALL PH+ Leukaemia and was admitted immediately to the Royal Children’s Hospital.
The first time we were discharged was after our most intense and difficult stint in late June.
re-induction
Lochie had begun a period called re-induction; a part of his protocol which included a mixture of chemotherapy and steroids, most of which he had experienced during the first two months of his treatment.
We had learnt early that with every new phase of treatment came the added side effects to contest with. However, the fact that we were repeating an earlier phase of Lochie’s treatment, the doctors were confident, that we could complete most of the next phase at home.
In the 5 months that we had inhabited hospital, we had grown accustomed to the fact that expert advice was just the push of a nurse call button away.
Hospital had become my comfort bubble!
My thought process during the drive home from hospital that day in June was one of extreme opposites!
Delighted for Lochie to be coming home but terrified that his life was now solely in the hands of husband Andy and I.
What if there is an emergency?
The “what ifs?” consumed me.
We live in the outer eastern suburbs of Melbourne 45min to an hour away from the RCH . What if there is an emergency? What if Lochie gets really sick under our care? What if his temperature spikes? What if we get the medication dosage wrong? ….
Being home for the first couple of days was an adjustment for the four of us we had not been under the same roof for almost 6 months. It was so nice to be home nonetheless.
We cooked together, ate together, did all the things I had been longing for whilst being confined to the four walls of the hospital room.
Steroids make them so hungry
This feeling for me, I guess the honeymoon period you can call it, was short lived however. The intense pressure of caring for a child on steroids is hard to explain, it’s an endless motion of feed, eat sleep repeat.
Lochie was eating 9 adult meals a day, I was doing three big shops a week and I was hardly keeping up with the demand.
Steroids make them so hungry and play havoc with their demeanor.
Intense mood swings
Lochie’s mood swings were so intense, they had a ripple effect on the entire family, especially his younger brother Aidan, who could not understand why he was getting shouted at all the time.
In hindsight, being home was not what I had envisioned, it was better than being in hospital obviously, but it was hard, and stressful. I felt immense guilt because being home as a family of four was all I had hoped for, the previous 6 months.
But it was different, we had a critically ill son who we had to care for, administer vital drugs to and feed. We had come out of our safe bubble and the daily lives for all four of us could not have been any more different to pre January 2018.
Lochie lasted three weeks at home. Our time together was short lived but I felt a sense of relief once we were back. Lochie had become quite unwell and this was now the best possible place for him.
back to hospital
We spent another 4 weeks in hospital adjusting once again to hospital life it was an easier adjustment than home however, for all of us I think. I often pondered in that hospital room whether we had become slightly institutionalised.
home again
When Lochie was well enough to go home again, there was still worry and concern but it was different this time. We were all different.
Andy and I felt more relaxed and in control, Lochie seemed back to his old self and Aidan was loving having his big bro around.
We spent a lovely 9 days at home, Lochie was so happy and life felt normal. We went for walks during the day enjoying the fresh air and each other’s company, I soaked up every minute and reflected on how we used to do these things last year and whilst I participated, I never gave each experience with my kids the 100% they deserved.
“life is what happens to you when you’re busy doing other things”
As John Lennon once sang
expect the unexpected
With cancer, we have learnt to expect the unexpected!
Today, I brought Lochie into hospital for a routine blood transfusion, a day’s treatment and back home tonight. So we thought!
Lochie’s temperature has spiked and he has been admitted with a fever, for how long we do not know.
Who knows the journey ahead?
What I do know is that our second stint at home, albeit for just 9 days has given me back the taste of what life as a family at home is all about.
Words cannot explain!
Perhaps suffice to say ….. “I so long for more”
