Dads Cancer Journey - 4 years in the making!

Four years ago, at the beginning of March, my dad, Quentin, was hospitalised, because for the previous 6 weeks, his face had been causing him pain, and a lump was forming near his jaw.

For a quick summary, my dad had his eye removed at the age of four (4) due to rhabdomyosarcoma, a cancer that affects soft tissue, connective tissue, or bones. It is a rare cancer that often involves the area around the eye, although can appear in other areas of the body. It is most often found in young children, and although now days it can be treated in such a way that allows the patient to keep their eye, my dad developed this cancer during a time where the only option they had was to remove the eye and the surrounding tissue, and then hit it with radiation and chemotherapy. This surgery as a child also meant my dad had one of his quads removed, to fill in a lot of the tissue they needed to remove from my dads face when they removed the eye. The cancer had wrapped itself around his optic nerves, and weaved its way through his muscles.

My dads final surgery for his rhabdomyosarcoma was when he was twenty two (22) years old. After having countless surgeries, hospitalisations, dying on surgical tables, and so many scars, it was over. Although for many years he wore a false eye, he decided it was time to patch up that area, and he would live with only one eye for the rest of his life. It was finally over.

For years, there was no problems. He got married, and became a step-dad to my oldest brother, and went on to have three (3) children with my mum; Me, and my two younger brothers. My dad had no sensation on the left side of his face due to all the damage, and was often judged by the world due to his looks, but we all loved him dearly, as we still do.

There were some issues and concerns with the way his face caused problems for his teeth, and the way that his growth on that side of his face had been stunted due to all the chemo and radiation, but it was manageable and didn't affect his daily life.

In the early months of 2019, my dad started mentioning a pain in his jaw in the left side, which was extremly unusual since his lack of sensation in that side. After a few weeks, he finally got a doctors appointment with our trusted doctor, who sent him for further testing. He went to a hospital to get a CT scan, but the results were inconclusive, but they assumed it was an abscess and sent him home.

Dad at the hospital, waiting for a CT scan.

Since then, he went to get a fine needle aspiration, and run some other tests when they discovered that the lump they found. was a cancer.

My dad just a few weeks before his surgery, my mum, and me.

They did more tests to determine how far it had spread and how severe it was. We discovered all of this the day before my 18th birthday. You can imagine how much my family struggled with this news, being unsure of our fathers fate. My mother was devistated by this news, and it sent many of us in a downwards spiral with our mental health. A week later, we got a bit more news. My dad was diagnosed with Adenoid Cystic Carcinoma, another rare type of cancer that mostly occurs in the salivary glands. It would have been caught months prior, if my dad was able to feel that side of his face. What was strange is that this cancer has nothing to do with the rhabdomyosarcoma my dad had as a child. It was all purely coincidence that my dad managed to have another rare cancer in that part of his face. Unfortunately, the doctors were unsure whether my dad would be able to have radiotherapy, as his bones were likely already compromised from having it as a child, but the good news was that the cancer hadn't spread far, and surgery was an option, although the surgery was high risk.

They had so many things to consider with this surgery. They even called in my dads doctor from his childhood, who had long since retired, so that they knew exactly what they would see when they opened his face. My dad had surgery on the 23rd of April, 2019, where doctors worked for ten hours to remove all the cancer they could. Unfortunately, this meant undoing eighteen (18) years worth of reconstructive surgery from his childhood, as well as take out the left side of his jaw bone, that the cancer had compromised. They originally planned on taking a small bone from my dads leg, and replacing the jaw bone with it, but unfortunately they had to remove the left hinge of his jaw as well, meaning they had no way to attach another bone to replace it. They also had to take out another quad from his oppposite leg, to replace the one they had to remove from his face, as well as a skin flap to cover a part of skin that needed to be removed, and to maintain blood flow to that section of his face. After a ten hour surgery, and ten hours of radio silence from the hospital, my dad made it through with no major problems. They hoped they had removed all the cancer, but they couldn't be certain. Unfortunately, we were unhappy with a lot of what was done. My dad, understandably, has a large amount of fear when it comes to hospitals. Not only did the hospital pin him down and allow a student to try to place an oxygen tube down my dads throat while he was still awake, they allowed this student to try multiple times even after they got it wrong. This caused a lot of panic for my dad. When the doctor took over, he placed the tube on, but left the cap on it as they started to put my dad under general anesthesia. Passing out, and with no possibility of breathing, my dads last thoughts before the beginning of his surgery, was that he was going to die.

Not only that, when my dad woke up from his ten hour surgery, he had a nasal-gastric feeding tube in place. One that was not even meant to be used on people anymore, as they are thick, stiff, and described by doctors and nurses alike as "barbaric and cruel." There would be no reason for this tube, had the doctors not slipped, and cut a wound straight into my dads mouth. To prevent infection in this open wound, they needed him fed through a tube, but instead of going out and finding one that would make their patient feel more comfortable, they used one they had close by in the operating theatre. One that caused great discomfort and distress. I assure you, as his daughter, I was livid, and I was ready to take down the entire hospital, but there was nothing I could do but bring comfort to my dad, who was very drugged, and very tired.

Dad was home only a week after major surgery!

On the 30th April, Just seven (7) days after a major ten (10) hour surgery, my dad was back home, on high pain meds, but healing well, and on the mend. He wasn't predicted to be home for at least 2 weeks, but he was determined to come back home, where we was sure he would rest better. Unfortunately, this would not be the end. A few days after dad returned home, he was headed back to the hospital. He woke up from a nap, and his stitches and wound on his face from the surgery was leaking, a horrible infection had occured. He receieved antibiotics from our GP, but was quickly sent off to hospital where he stayed for three (3) days of IV antibiotics, and so they could monitor the infection. A few short months later, my dad was getting ready for radiotherapy. They weren't certain that it would do much, but they wanted to do the best they could, since they couldn't be certain it was all gone. By August, my dad had started radiotherapy, five (5) times a week, and would have thirty three (33) sessions all together. It wasn't easy, and it was a juggling act of different appointments, but in the end, he did it! We knew it would never truly be over. There would always be the risk of the cancer returning, and spreading to his brain or his lungs. There was now the increased risk of his skin breaking down due to the double dose of radiation, one from when he was a child, and the newer batch of radiation he had. In the last few months, my dad has been feeling pain in his jaw. His jaw was getting tighter and tighter, and he was losing the ability to open his mouth wide enough to eat food. After a few more scans, the doctors discovered that my dad has osteoradionecrosis, an unusual complication from radiotherapy to the head and neck that results in bone death. This caused a huge infection at the end of my dads jaw bone, which then created an abscess. The bone kept deteriorating, and the only choice was hyperbaric treatment.

Dad in hospital (Day 1) with a nasty infection and abscess in his jaw

After nearly a week in hospital on IV antibiotics, the infection was under control, but it would

never go away until the necrosis was healed.

Dads face a few days after it was drained, cleaned, and days after being on strong IV antibiotics.

They placed a PICC line into his right arm, where they would administer daily IV antibiotics by having a nurse come to our home, and he would start hyperbaric treatment as soon as possible.

Dads PICC line that goes from his right arm, all the way to his heart. The tube is 39cm long

So far, the plan is Iv antibiotics daily, Hyperbaric treatment five times a week for a month, and oral antibiotics for six months.

Hyperbaric dives are normally used for divers who have come from deep dives, and risen back up to the surface too quickly, and potentially develop decompresion sickness. In recent years, studies have shown that these treatments help increase bloodflow, which can help heal necrosis. On Monday the fourth (4) of September 2023, my dad had his first hyperbaric dive. Two hours in the chamber, Monday to Friday for minimum four weeks. So far, dad isn't liking tthe affects of the treatment, considering he feels sick shortly after leaving the chamber, but no large side affects yet.

Dad in the hyperbaric chamber

Dad in his fancy scrubs, and his cute little water bottle He is progressing well and we are trying to live our best lives while we wait for him to progress. I will keep everyone up to date with the progress as time goes on!

The day before his first hyperbaric treatment, we celebrated fathers day with dads new present, and home made crepes with sweet cream cheese spread, and fresh fruit.

Home made crepes for fathers day

Dads fathers day present! A Boba Fett helmet that lights up!

I see you. I hear you. I love you.