On Feb 7 2017 Harry was diagnosed with Acute Lymphoblastic Leukaemia - Philadelphia Positive. This disease is ferociously aggressive, as was Harry's treatment Protocols. Two times he was in PICU (Paediatric Intensive Care) with a very uncertain future. Both times he battled his way back. His treatment left him in chronic pain and unable to walk. The following story is written by his mother Natasha, about his recovery, about his continued feeling of isolation and about her ferocious love for her son. Love Tanya
There is a saying that goes something like this, “And once the storm is over, you won’t know how you made it through, how you survived, or if the storm is really over. But one thing you know is that you are not the same person that went into that storm. You are forever changed.”
Harry finished his chemotherapy in February of this year, 2019.
There was no bell.
There was no big build up to Harry’s last chemo, no celebration, no photos of the last chemo.
It certainly wasn’t how I pictured it.
For those that don’t know, Harry ended up with the mother of all pneumonia’s 5 weeks before his scheduled end of treatment, putting him back into hospital, including PICU, for 5 weeks, fighting yet again another life threatening infection. So it was decided that Harry would not restart his chemotherapy, that he was done, five weeks early. His little body could not take anymore.
I remember standing in his hospital room, smiling, thinking that’s it, he is done then, no more chemo after 2 years of it. Yet, bitter sweet because as he lay in front of me struggling to breathe, using every abdominal muscle, chest sucked in, grunting as he tried to breathe, no improvement on the myriad of antibiotics he was on, my heart was broken.
This was his end of chemo.
He was finished and yet still fighting for his life. His survival still uncertain. The funny thing is, we couldn’t then remember when his last chemo was. I had to back track and work it out...February 7th his last chemotherapy, exactly 2 years from diagnosis day which was also on February 7th and also the birthday of his oncologist and my brother.
There is a funny thing about surviving this storm, and I don’t want to sound bitter, because one thing I am is forever grateful to the medical teams and my God that I still have Harry with me.
But I have guilt. Guilt because I am well aware that what I am writing about now, about survivorship battles, is hard for those who have lost their children to this disease. How dare I whine when I still have Harry here. But this is real and it’s bloody hard. I know I am not alone in how I feel.
I think to most people, your child finishing cancer treatment means you can go back to normal life, pick up where you left. I was hoping this too. But it’s not possible. I have guilt even saying this because I’m a positive, glass half full girl! I’m sure some do it better than others.
Maybe it depends on your child, their age and treatment. But not my child. It’s been the hardest road that never seems to end. Some days it seems the struggles outweigh the good. As parents, we live daily with anxiety and fear. We’ve learnt to use humour and jokes as way of coping in our daily lives.
One huge worry is that Harry hasn’t fit back into school, his first year of high school. His anxiety so severe that it literally disables him. We feel let down by the education system we are in. It’s now 3 years that Harry has not done proper school, a proper report card, proper assessment. We feel helpless, lost and on our own as parents. I can only imagine how Harry feels. How do you not worry about that? Everyone wants the best for their child.
It’s not Harry’s fault he got cancer. He should not be punished. Yet he is so smart. Smarter than school. He did Naplan testing last term and he got in the national average all the way across, despite missing school. That’s got to tell you something. But right now, Harry feels alone and isolated. He feels far removed from school. He feels a burden and a problem to them. These are his words.
“I feel distant from my friends”.
In his words, “like they are moving on”.
In their defence, he is hardly there so of course this potentially can happen. I get it. Harry tells me he feels dumb and a failure for not being able to reintegrate back into school.
My darling boy you are not a failure. My heart breaks. We will fix this for you.
Ongoing chronic health issues plague our children. They don’t just stop after treatment.
Harry gets regular severe back and leg pain. He can’t sit, stand or walk for too long. He relies on regular analgesia, massage and heat packs for relief. He has lost all stamina and endurance and gets short of breath very quickly.
Harry has chronic gut issues as a result of so many gut infections. Whilst he can now walk, he cannot run properly so he can’t do a lot of sports. Sleep is hard for him. His anxiety post treatment is a daily battle. We worry about his mental health. This is a 12 year old boy.
Going into this cancer battle we are told of what can happen down the track. We know that the chemotherapy can cause another cancer anytime and that our kids can relapse. But we hide this information during treatment, deep in the depths of our head somewhere.
We just want our kids well.
Once treatment ends, out that stuff pops shouting “remember me?” And it follows us around, every bloody day!
The heaviness in my chest, the anxiety and nausea I feel some days is real and crushing. Not every day, but many days. Some days I can’t breathe. Every bruise. Every headache. Every day Harry tells me he feels so tired. Every fever. In my head it’s relapse before everything else. I’m told this eases as time goes on, but it takes years. I hope so.
The simple cleaning out of their room and clothes is hard, even when they grow out of their clothes. I look at some clothes or special items and I can’t throw them or move them on. The what if’s go over and over in my head. What if I lose him one day and these are all I have left of him? Yes, I think that. So, I hold onto things in a special box as memories just in case.
So, what do we do? We try to live for today as best we can. We focus as much as we can on the good stuff (and there is plenty of good stuff too). We keep busy. I hug my children all the time that I’m sure they get sick of it. I tell them I love them multiple times a day.
There is a saying that says, “If you focus on the hurt you will continue to suffer. If you focus on the lesson you will continue to grow.” I love this. There is a lot to be thankful for and a lot to be positive about.
The bravery and courage shown not only by Harry but also all of us, his family...we are all strong.
The love and support shown to us from our village shows how blessed and fortunate we are.
The beautiful oncology families we have met and grown to love like our own.... we understand each other and we “get it”.
We learn new perspectives. What was important is not anymore. It’s not so important anymore what score my children achieve when they finish school. What I do care about, is that both my kids have tried their best and finish school happy, healthy and kind young adults. If we achieve this then our hearts will be fulfilled.
We learn the importance of giving back, helping those who helped us, both individuals and charities. We don’t ask for much or want much and we are thankful for a lot.
So, this is life after the storm. I understand fully why they said you would question if the storm really is over. It doesn’t feel over. Some days, I still feel in the midst of the storm.
One thing I do know is that Harry, my husband, my daughter and me, we are not the same people who walked into the storm.
We know that life is short and life can change in a moment. We live daily with this fear.
Our hearts are a little heavier....but that’s ok, this is our new normal and we will be ok.
The storm will wither out. We just have to walk in the puddles a little longer