Childhood Cancer and Hendrix

Welcome to Childhood Cancer

How it all began

I am sorry to say that I knew very little about childhood cancer before Hendix. It's not that I had stuck my head in the sand, just that no children in my life had been diagnosed with cancer. And very few adults in my life had been diagnosed with cancer.

After watching several documentaries like what the health and forks over knives I honestly (and naively) believed I would never develop cancer.

Hendrix vs Childhood Cancer: Diagnosis

Our little Dude Hendrix born 18th March 2021. He was diagnosed with a rare and aggressive high risk, stage 4 cancer called rhabdomyosarcoma at 8 weeks of age on the 13th of May 2021. Chemotherapy treatment commenced three days later.

Hendrix getting chemo for the first time after his childhood cancer diagnosis

Hendrix a few weeks into receiving treatment for childhood cancer

Hendrix recovering in NICU after he died in the oncology ward

Hendrix getting an ECG in NICU the day after he died

Hendrix a few months into childhood cancer treatment

Hendrix had an extremely rare case which had spread to majority of his body at time of diagnosis. Meaning surgery and radiotherapy were not options. With over two hundred tumours on the external layer of his skin, fatty layers of his skin, layers between his organs, on his kidneys, in his liver, in his lungs, in his lymph nodes, in his bladder and in his bone marrow.

Hendrix vs Childhood Cancer: Treatment

Tissue samples of his tumours were sent down to Prism research clinic. Prism (or Zero) is a research facility that helps personalise the treatment protocols for each individual case of children's cancer. Unfortunately, this process takes months and we never did find out the results.

Below is the front and back of his PET scan. Dark spots being his tumours (excluding the brain, tongue and heart etc where there is constant activity in the cells.

Hendrix PET scan showing childhood cancer tumours

Hendrix PET scan showing childhood cancer tumours back

Hendrix vs Childhood Cancer: Laryngeal Spasm

At about 7:30am, while breastfeeding at the hospital, about to start his third cycle of chemo on 23rd June 2021. Hendrix had some milk go down the wrong way, causing him to choke and cough.

This triggered a laryngeal spasm. Causing him to choke, suffocate and turn blue in my arms. Hendrix was clinically dead for three minutes. A nearby Dr performed four rounds of CPR. One of the nurses ran out for the defibrillator. Just before they were about to use it, Hendrix started breathing again with assistance.

What happens when you die for three minutes?

After some time in PICU it became evident he was now having seizures. They were sporadic and could also be frequent. Lasting up to 10 minutes.

An MRI scan found he now also had brain damage to both left and right sides of his brain, due to the three minutes of no oxygen to the brain.

Hendrix vs Childhood Cancer: Remission

As Hendrix needed to be put under general anaesthetic for his brain to be checked, they took the opportunity to check on all of his tumours. They discovered they had drastically decreased.

On the 14th of July 2021, Hendrix had a second PET scan showing no cancer cells. Happy birtwday to me (my birthday week) - Hendrix was declared in remission. Below shows his original PET scan on the bottom and the more recent at the top (dark spots being the activity in his organs and his nappy full of the sugar solution they put into his body to show the cancer cells)

His original treatment protocol was to be completed as scheduled. An additional 12 months of another type of chemotherapy would be completed afterwards. To try and prevent relapse. Stage 4 high risk Rhabdomyosarcoma is high risk of relapse.

Hendrix vs Childhood Cancer: Relapse

On the 27th of September, Hendrix started to show what we thought were signs of his brain damage getting worse. Thinking we might possibly needing to tweak his seizure medication dose, I packed our hospital bags.

At about 2am on the 28th I took him into the ED. He got progressively worse and was obviously suffering a lot. Then at about 3PM, he ended up going under general anaesthesia for a scan. Unfortunately, the scan showed the cancer had returned and was now around his brain and down his spinal chord.

Relapse, now what?

We were given this information while he was still under, and told we had to decide what to do.

Our options were;

Leave him as is, letting the childhood cancer take him in the next day or two and never see him smile or even look us in th eye again.
Put a shunt in and drain it to an external bottle which would likely get infected.
Insert a shunt with a tube down his neck, into his abdomen, draining tot he spaces around his digestive organs.

We had the shunt put in, draining the cancer cells to his abdomen to give us a little more time with him. Make him more comfortable and also allow us to say goodbye. Hendrix relapse of childhood cancer after first brain surgery
That night was hard, he did not improve, he got worse, he was vomiting and suffering. It was stressful, I could see that the nursing staff also stressing over him.

The specialist team came in the next morning and thought something was wrong. They organised an emergency scan first thing the following morning. Results of the scan showed the shunt was not in properly. A kink was preventing proper draining. The pressure in his brain had not eased at all. Emergency brain surgery was organised.

That night after the second brain surgery he improved. For some reason, I woke at 1am. I found him awake. Cooeing and smilng at me for the first time in days, all I could do was laugh and cry.

Hendrix vs Childhood Cancer: Hospice

Two days later, we left for Hospice. We went to an amazing facility called Hummingbird House so we could spend some time with Hendrix.

It was a tough time. Hendrix did not bounce back well from the brain surgeries. Not sleeping well. Needing me to hold him 24/7. Taking a lot of medication to try and help him tolerate the pain.
Hendrix at Hummingbird House after his childhood cancer being declared terminal

Hendrix vs Childhood Cancer: Blocked shunt

After nearly two weeks he had improved a fair bit. We had a scare where he suddenly got very upset, started vomiting and went grey while screaming. The staff had to quickly come and do a sub cut medication to help ease the vomiting. Hendrix calmed down after about 15 minutes, sleeping on me in my vomit soaked pyjamas for hours.

Hendrix childhood cancer tumours blocked shunt recovery
After that morning we thought he would quickly deteriorate. At this stage the childhood cancer was supposed to have taken him. Our little fighter made a full recovery.

Our Oncologists theory is that the shunt got temporarily blocked with tumour cells. This eventually unblocked when pressure built up enough to dislodge the blockage(which was unexpected, we were advised the shunt was going to block and he would not last long once it did).

Blocked shunt, more surgery?

After another week at Hospice with no incidents, we spoke with our Oncologist again. He thought Hendrix would still have another couple of months with us. Armed with that information we decided to have his CVL surgically removed. The dressing was bothering him and he was constantly scratching at it. Plus he had gone most of his life without a bath due to having to keep the dressing completely dry.

Hendrix vs Childhood Cancer: Back to life

On 19/10/2021 we had Hendrix’s last surgery, to have the CVL removed, and left hospice the following day, going home to try and return to “normal” for Hendrix's big brother Zee.

Unfortunately, the surgery to have the CVL out was much more brutal than we anticipated. He was in allot of pain again. For days, he needed allot of pain medication and to constantly be in my arms (which I didn’t mind except for the sleep deprivation).

On the 27/10/2021 we could remove the dressing, meaning he got to have his first bath with his big brother. Hendrix was not sure how he felt about being in the bath. After a little while we got a few smiles while he was in there, he definitely preferred just being in my arms.

Hendrix vs Childhood Cancer: Near the end

The morning of 28/10/2021 Hendrix became extremely unsettled and clingy. By about 4pm he started vomiting and one of his eyes started to stop opening properly. We had a bluecare nurse come out and put a sub cut needle in, just in case we needed to give him anything intravenously overnight.

By about 10pm the vomiting and crying settled. He managed to snuggle me to sleep with an uneventful night just being cuddled up to me.

Hendrix last night of cuddles before childhood cancer took him away

The next morning on the 29/10/2021, he started to have seizures and wheeze when he breathed. His eye was still drooping, he wouldn’t talk, coo or smile, he would only cry in pain.

One of the Childrens hospital palliative care nurses came out that morning and confirmed my fear, he was now in the final stages of life. The wheezing we could hear when he breathed was his airways collapsing. His heart had started sending all blood flow to his brain to try and keep it going, so the rest of his body wasn’t functioning well.

By lunch time he had started to turned blue. He couldn’t control his body. Could not even blink. He was so medicated the only time he moved was when he had a seizure (every 10 mins or so) he would scream and lift his arms up.

Hendrix slowly suffering to death with childhood cancer

The nurse was on the phone to the Doctors at the hospital frequently while they tried different medications and doses to try and make Hendrix comfortable.

Eventually we managed to stop the bigger seizures, however, he could not move, blink, talk, smile. We had to put cream on his eyes as they were drying out. Water on his tongue as he wasn’t even swallowing. And cream on his lips to stop them from cracking and bleeding. Hendrix carried on his fight like this until about 4am.

Hendrix vs Childhood Cancer: We lost the fight

He started to seize again. Frantically we called the hospital nurse who had been with us until late into the night. She told us to give him the medications we had left and she was on her way back over. We gave him all the drugs. Cried. Let him know it was okay to leave us. It was his time to go and stop suffering.

At 5.02am on October 30th 2021 our gorgeous Hendrix took his final shuddering breath after an hour long seizure.
After suffering so much.
After only 7 months with us.
7 months full of love, pain, smiles, chemo, laughter, surgeries, joy, transfusions, affection and torture.
Hendrix Our happy little childhood cancer warrior
You do not know pain until you have watched your child suffer to death. And I hope you never do.

Because no child should go through what Hendrix went through.

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