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
also titled Sorry Mum for saying F#CK... lots
Don’t get me wrong childhood cancer sucks an untold hell but I refuse to #f*ckcancer and here’s why.
F*ck you is the last retort. It’s when you have no come back, are powerless, paralysed, spent and can’t think of a f*cking single solution, just angry reply. F*ck you is what you throw away when you’re done. When you’re throwing your hands up in surrender.
Cancer can f*ck me. I refuse to rest, I refuse to throw my hands up at him and give in. I will rage at him and every single time that f*cker throws me and mine to the ground I will get up, wipe away my tears, dust myself off and do something because surrender to this f*cker is not an option.
There is always something that you can do without throwing your hands and a hashtag in the air. Some ideas cost money, some ideas cost time, all of the ideas cost effort and require you to show up.
Below are two support structures: Support the child, support the family
Support the Child
When a child or teen with cancer is isolated at home or in hospital they are not necessarily (quite often not) isolated from visitors who are well. ASK if it’s OK to visit a sick child and actually do it as often as you can.
Sometimes the look of a child undergoing cancer treatment can be confronting. Rather than protecting yourself or your child from being uncomfortable seeing a friend sick try to approach the visit as a way to teach yourself or your child about difficulty and how to support that. Teach yourself or your child that being brave isn’t about NOT being afraid or challenged or uncomfortable; being brave is feeling all of those things and doing it anyway.
If you feel awkward visiting here are some ideas:
Make something ‘your thing’.
If you have a thing that is ‘your thing’ it makes visiting a delight for both you and the child.
If a child or teen with cancer is too sick for visitors, Facetime, send them texts and videos. STAY IN TOUCH. Social isolation as hard for some kids than some of their treatments.
Support for the Family
The moral of my soap box is that clicking like and share and compassionate comments collectively do provide support. They’re important for awareness and to cut through our isolation; we do need them and we do thank you. Did you feel there was a but coming?
If you want to do good deeds and make a significant difference in the life of a child with cancer it will take more time and effort than a hashtag and quite likely some confronting moments if you’re directly supporting a child or family.
The reward will be the opening of your life to great meaning and beauty. Standing aside a family fighting for a life in even in just the smallest way can make the most remarkable difference to both of your lives.
Visit some other blogs
Believing in Tomorrow: The 8 part series of 14 year old Tamlin's rare cancer diagnosis and treatment, in her own words
Our six year old daughters horrifically beautiful cancer diagnosis: how my own family's life opened up to great meaning and beauty during our daughters cancer diagnosis.
Eating Angry for Breakfast; you can't negotiate boundaries with a chid's illness so sometimes you just have to swallow your anger for breakfast.
On Sunday 27th October Motorcycle Clubs & social riders, escorted by the QLD Police will be touring North Brisbane collecting donations to the Bravery Box, for kids & teens with cancer. Departing Westfield Chermside 9am-9.30am they will finish at Warner Tavern for a FREE Family Fun Day; bouncing castles, food, music, dancing, bubbles, all the good fun.
Join us at the starting point to farewell our riders or join us at the finishing point for a Family Fun Day- or come to BOTH or you can register your street for at the rally to visit.
Starting Point - join us to farewell our riders.
Sunday 27th October
Family Fun Day! Finishing point. Watch as our riders thump into Warner Tavern for our Family Fun Day.
Sunday 27th October
12 noon:Warner Tavern
2 Everest Street
The Bravery Box help kids with cancer celebrate their courage. Part of our work is providing rewards for kids and teens receiving treatment at Qld Children's Hospital. Right after a painful or confronting procedure they're offered a prize from 'The Bravery Box'. Not only is this a reward but it gives our kids an opportunity to practice RECOVERY - moving from 'I'm hurt' to recovery is an important skill for our kids.
(from left) Lara, Madelyn, Laela. Lara and Laela are both leukaemia survivors and Miss Madelyn and her Mum are the driving force behind organising this toy rally.
I'd like to help on the DAY!
This form is to let organisers know you'd like the toy run to pass by your street / community group / workplace / school. Routes will be confirmed three days prior to the event. Applications close 20th October.
On Sunday 27th October Motorcycle Clubs & social riders, escorted by the QLD Police will be touring North Brisbane collecting donations to the Bravery Box, for kids & teens with cancer. Beginning at 9am at Chermside they will finish at Warner Tavern for a Family Fun Day commencing at 12 noon.
A community coming together to say 'not on your own' to kids with cancer.
Eat, drink and be merry - providing you're over 18 - this gig is FOR the kids, just don't BRING the kids.
Three years ago Keely Reid was unable to stand by and do NOTHING when her 6 year old 'niece' Lara Allan was diagnosed with Acute Lymphoblastic Leukaemia.
Brews, Bites & Beats was her very big SOMETHING. A massive annual party to celebrate, that while life can throw some pretty nasty plot twists at us, we can still DANCE, we can still be merry, we can still laugh.
In its third year, Brews, Bites & Beats has become a community of people who celebrate life together and raise some serious coin for The Kids Cancer Project.
We’ve grown up and out of school halls – this year we’re moving into the valley to the Warehouse – Cloudland’s sister venue, the old Family Nightclub.
If you were Irish jig-ing last year you won't be disappointed as Tartan Shamrock are making a repeat appearance. The ballady tunes of Caillin Malley are also back by popular demand.
Partying in the name of Kids Cancer Research has never been more awesome – your tickets this year include a 3-hour bar tab, eats and also… bucketloads of kids cancer research dollars.
The Kids Cancer Project are our recipient again this year – their gutsy goal of ERADICATING kids cancer gets us right in the feels.
If you or someone you know have something you'd like to include in our raffles or auctions we say 'Hurrah! You are all the colours of awesome!'. Get in touch with Tanya on email@example.com or Keely on firstname.lastname@example.org to let us know and we will arrange pick up and undying gratitude and love.
So far this event has raised over $10,000 for the Leukaemia Foundation in 2017, over $13,000 for The Kids Cancer Project and over $10,000 for Bravery Box in 2018.
Cancer, not the end of the story.