We liked the days when we didn’t know much about childhood cancers and when children with balding heads made us feel scared and we pitied the children and their families. We didn’t know about chemotherapy or central lines and we didn’t realise that weekly blood tests were needed. But now, when we pass a child whose hair is thin, brittle and balding, we smile to them through our breaking hearts.
Dexter’s cancer was hepatoblastoma. He was treated at the Childrens Hospital at Randwick, Sydney Kids. We think of his two main oncologists and his surgeon with heartfelt thanks and respect. They saved Dexter’s life.
Because it’s Childhood Cancer Awareness Month, we’ll share a few small memories of Dexter’s cancer journey. This is written to Dexter, as a letter for him, from his mother, Lenice. (Andrew’s fears and hopes and love are just as strong, they’ve just not been written down.)
It all started on the 21st of May 2012, just a week after your birthday.
We saw Dr K. for our regular check-up. (It was a year old premmie check-up) He was happy with you; with your progress and growth. Things were looking good for a change. But then, his face changed. He felt something in your liver. He said it was enlarged.
The call came on Monday. There was definitely a lump. We were being sent to Randwick Childrens’ Hospital for an MRI. We would be there overnight, because you had to go under a general anaesthetic.
We went to Sydney on the 6th June 2012. We waited and waited. We were admitted to the oncology ward and introduced to what turns out to be our home for a while.
7th of June saw us wait and wait and you were so patient! You fasted for over 20 hours! You did so well. You were meant to be one of the first to have the CT scan (clearer results than an MRI scan, apparently), but you kept getting bumped back.
8th June and Dr Toby confirmed our fears. You have a tumour in your liver and there was a nodule in your lung. How was this all possible? Hadn’t you had your share of medical issues and pain?
Dr T sent us home for the long weekend. The Friday was so strange; too similar to this time last year, when we were told about your brain damage. We didn’t want to see anyone. We just wanted to be on our own. Daddy put you in bed with us, and we held hands all night.
Wednesday 13th June 2012 - We were hoping for some good news for your 13 month birthday. We didn’t get it.
Dr T. came and confirmed the test results. You have Hepatoblastoma; liver cancer. Unfortunately, there is a lump in your lung, so that will have to be checked, too.
The surgeon came in and talked about the operation to insert your central line and to have a lung biopsy. You’ll have a 5cm cut in your rib area for the biopsy. They also have to take some of your lung out, but it will be less than 1%.
You had crashed. (Were no longer breathing) Daddy tried to call me, but I already had my phone on silent. So, I walked in to see you being bagged (resuscitated). It was not what I was expecting and was quite a shock. After the NICU, I thought I would never see that again. Your whole body was floppy and it moved up and down only with the pressure of their pumps.
I spent some time doing washing and when I came back, I was expecting you off the ventilator, so what do I walk back into? You… all floppy, with six or so people working on you and you being bagged! Twice in one day! Are you trying to kill me?! Your Dad was a bit shocked, but we both stayed and watched. They thought you might have to be re-intubated, or have CPAP, but in the end, an oxygen mask was all that was needed. They don’t know what caused that one!
You had some nuclear stuff injected for your kidney test.
The surgeon saw us. He’s happy with your progress. And, he gave us the first bit of good news yet; the lung nodules appear to be lymph nodes. They are perfectly normal and can be left alone! So, now when the chemotherapy starts, it shouldn’t be as intensive.
Dr Draga came and confirmed it is just lymph nodes and to discuss chemotherapy options. It looks like they have found another type of chemotherapy that might not cause hearing loss. (Dexter already has a vision impairment and the chemotherapy they were initially wanting to use usually leads to hearing loss.)
Once the chemotherapy starts, there are lots of precautions I need to take because of my pregnancy, especially when changing your nappies and cleaning your vomit. It makes me scared that we will lose some of our bond. I want to be able to hold you and comfort you and not be worried that you might throw up on me. When this realisation hit me, I couldn’t help but cry. I can’t even kiss you.
One cycle goes for 96 hours. Four days. So, the chemo will run continuously for the 96 hours.
It takes about seven days for the chemotherapy drugs to be out of your system. Then, it takes about 21-28 days for your body to kill everything off and regenerate to a normal level, and then we start again.
When they hung the chemotherapy bag up, I cried. I know you need it, but I'm so scared for you. I'm scared for the unknown of the next few months. I'm scared you won’t respond to treatment. I'm scared you’ll stop breathing!
Your tumour levels have dropped from 120,000 to 6,000, so that’s really good. But, they need to be under 8, so there’s still a little way to go!
I made sure we got lots of sloppy kisses and drool cuddles before the chemo started. I think that’s the hardest part; having to be so careful with you for those two weeks. It’s just not fair.
The hospital volunteer, Margaret, was so excited to see you! She kicked me out of the room twice, just so she could sit by you. I think you recognised her voice, too, because you looked towards her when she first spoke.
We got the call that there would be no surgery at this time. The tumour has shrunk, but not quite enough. They want to know they have it all before they do the surgery. But, they decided to amend the chemotherapy. This cycle will only be 48 hours and they aren’t using the secondary cancer causing drug. They will use a chemotherapy that can affect your heart muscle! It’s a bit of a no-win situation really!
Surgery - It was scary when I handed you over to Daddy, to take you in. That’s when it hit that you were having major surgery; you’d think it would have hit sooner, right?!
We waited and waited and waited… five and a half hours later, Dr Guy finally came to see us. He said it had gone well. You needed blood, but came out breathing on your own.
Daddy had just called me to say you were doing ok and when he went back in, you were being bagged again. It’s such a horrible sight!
You’ve got tubes going in your central line, your wrist and your ankle. You have a drain and a cannula. You’ve got an epidural. There are so many drugs and monitors. The alarms are so familiar. You still show pain and the hardest thing to see is when you do a silent cry. It’s heartbreaking. You can’t make any noise because of the ventilator and we can’t make it better for you.
In the ICU - You’re currently on ketamine, morphine, dexmedetomidine, saline with potassium, regular saline, TPN and lipids! It really is like being back in the NICU! You’re having antibiotics, too!
Your surgeon, Dr Henry, is very happy with you!
Not only is he happy for you to start eating solids, but he is pretty confident that, after checking the pathology reports, he was successful in cutting all the cancer out!
I’ve just noticed your hair growing back; it’s so cute and soft. But, it will fall out again, once we start your chemo again. I know it will grow back; I just miss you having hair.
(Dexter’s hair was shaved bald after it started falling out in chunks after his first round of chemotherapy.)
You had one lot of platelets after a week and the next day was horrible. You were sad all day and just wanted to be held. (Platelet transfusions were always painful for Dexter.)
I hate day three of chemotherapy! It’s so nasty; you don’t eat, you don’t drink and you have no energy. You threw up a few times today and we had to ask for the maxalon (pain relief); for some reason, they wouldn’t give it to you without us asking for it, which was just frustrating. You really picked up after you got it, though.
It was a little strange seeing them take down the last lot of chemo bags. When this all started, I couldn’t see the end, but then it was there.
You developed an egg allergy! Apparently, it’s quite common, post-chemo.
Knowing Dexter’s chemotherapy treatments could lead to leukaemia is frightening. Every bruise… every fever… every illness sees up wondering, in silent fear.
But, Dexter was amazingly patient and strong and we got to bring him home with us. We personally know families who no longer have their children, because cancer took them. So, every day, we know how lucky we are.
As Childhood Cancer Awareness Month draws to an end, we’d like to stop and think about all the children who have earned their wings. And, we’d like to offer strength and love to their families.