A Little Cowboys Journey
Friend’s members attending the recently held Region 4 Annual Conference were captivated by a special presentation from Guest Speaker Lisa Werner who spoke about her incredible and moving journey after her son Adam was diagnosed with a brain tumour.
“The first time I ever really thought about brain cancer was in 2015 when TV personality Carrie Bickmore used her Gold Logie acceptance speech to raise awareness about brain cancer. Her emotional yet informative speech was inspired by the death of her husband and included stats like 'every 5 hours someone is diagnosed with brain cancer' and '8 out of 10 people who are diagnosed will die from this horrible disease'. From this speech her charity Beanies for Brain Cancer was born. While I was touched by this speech and I greatly admire Carrie Bickmore, life moved on and I didn't really think about that speech again until my son Adam was sent for a CT scan and we heard the words "there is a mass on his brain and it doesn't look good"
Adam was generally a very bright, energetic, chatty child, he hated sleep though and was impossible to get to bed if there was something exciting going on. He had a good appetite and appreciated the finer things in life like fancy cheeses and smallgoods. He was mad about farming and tractors and was very adamant about becoming a farmer. He had a great start to Kindy and School. At the end of his reception year his teacher suggested that we get his eyes checked because he was having trouble seeing the board. The optometrist couldn't see any issues but suggested glasses with a very low magnification and another test in six months.
The glasses really didn't help Adam and this should have been our first clue that something wasn't right. By the middle of 2020 Adam started to have random headaches and vomiting but these were intermittent and cleared up with rest and fluids. We tried twice to get him into a doctor but due to Covid restrictions we could only access phone consults. Each time, we were told that it seemed like a simple virus and to let him rest and keep him hydrated.
Adams symptoms became worse towards the end of August 2020. He would go flat out and then crash. The week before his tumour was found was definitely up and down. Adam vomited on the Thursday night but was full of beans by Friday afternoon so we went ahead with our planned family road trip to Monash playground. We had a fantastic day and everyone slept well that night.
The following day Adam vomited and I spent the rest of the day in bed with him watching movies and dozing off. He didn't go to school on Monday or Tuesday and I had taken him to see my Chiropractor on Tuesday morning. The Chiro suggested that there might be an issue with his sinuses and that if he hadn't improved the next day then I should take him back to the doctor and insist on a face to face consult.
By Tuesday night he had sparked right up so Wednesday morning I sent him to school. He was a bit teary when I said goodbye and about 40 minutes later I got a phone call from the school to say that he had thrown up under the teachers desk. As I drove down to pick him up I called Tanunda Medical Centre to try to get an appointment, they didn't have any that day but I must have sounded pretty desperate so I was put through to the nurses in the treatment room and they double booked Adam for an appointment that afternoon. We saw Dr Rebecca Dickenson and I could tell straight away that she wasn't going to fob me off. She did a thorough examination and really was considering everything. She gave us a referral for a CT scan telling us that she wanted to rule out any big issues first. The following day, Thursday 3rd September, Adam had a CT scan. We were barely home from Benson's Radiology when I got a phone call from Tanunda Medical asking us to come in that afternoon. I felt sick and knew that something must be really wrong.
To hear the words "there is a mass on his brain and it doesn't look good" was gut wrenching. Nick was at work and I didn’t realise that he had left his phone at home. It took a bit to get hold of him and meanwhile I had called Mum and she was on her way.
By the time Mum and Nick arrived we had a plan. Adam was given a dose of anti-nausea meds and Dr Dickenson told us to go straight home and pack for at least a week in the Women's and Children's hospital. Our family stepped in quickly to support our son Jack, who has Autism, and Nicks two older children, Rhys and Mikhaila who live with us full time. Adam slept on the drive down which gave us a chance to call a few people and let them know what was happening.
When we got to the hospital, we were faced with the first hurdle in a pandemic hospital admission. Only one parent was allowed into emergency and Nick was left to pace on the footpath outside. He made firm friends with the security guard that night and we still get a hearty greeting every time we see him. Fortunately we didn't have to wait long to go through triage and after about an hour Nick was able to join us in emergency. By 11pm we were transferred to a room in the Kate Hill ward. I don't think I have ever been so glad to crawl into a hospital bed.
The following day, Friday 4th September was a full day of tests and scans, meeting therapists and specialists to get a pre surgery baseline. It was a mad scramble to get everything done before the weekend. Adam had his first of many MRI's and the final stop was the Ophthalmologist. Adam was tired but ate a hearty dinner as he was on anti-nausea meds and steroids, it was the first time in a really long time that he had felt really hungry. He fell asleep quite easily and at about 9pm Nick and I were both able to sneak out of the room to meet with Dr Amal Abou-Hamden to discuss what the tests had found and what the plan was.
It was in this meeting that the "mass" became a tumour in his right parietal lobe and the word Cancer was used. I was emotional and exhausted and very grateful for Nick who was asking questions and even taking notes. While Nick was obviously concerned, he was also fascinated by it all and still has a copy of that first MRI on his phone. He proudly shows it to anyone who will look as proof of his tough as nails son.
When Dr Amal showed us the MRI image, I felt sick, what it showed was Adams brain being pushed to one side by this sinister looking mass and a cloudy shadow around it. I still struggle to look at it. Dr Amal explained that they hoped to wait until at least Sunday morning to operate as they wanted to give Adam another 24 hours on steroids and a hearty diet to boost his strength. We signed the consent forms and went to bed expecting a very boring Saturday in hospital building Lego.
Adams body had other ideas and at about 5am on Saturday morning Adam began to vomit and complain of headaches, and for the next 5 hours we watched our little boy get worse and worse until he was screaming at us all to "get that naughty lump out of my head". It was a primal scream and will stick with me forever. The other moment that sticks with me from that day was the sheer relief that I felt when the surgical registrar walked in his room and told us that there was a theatre ready and they weren't waiting any longer.
Suddenly everyone was moving and we were on our way down the hall to theatre. It’s funny the little details that I remember from that day and to be honest, it was the most traumatic day in our entire journey.
Once Adam was in theatre we went back up to the ward to gather our thoughts and pack our stuff ready to spend the night in the Peadiatric Intensive Care Unit. The staff on Kate Hill are fantastic, they calmed us down and encouraged us to get out of the hospital, have a decent meal and just give ourselves some time to catch our breath. We were comforted by the text message updates coming direct from the operating theatre so we headed out of the city, grabbed some lunch and ended up at a friend's house out in the suburbs until we got the message to head back to the hospital.
While we were waiting to be let into PICU we were comforted by the plaque by the door showing that this ward was made possible by the generous donations from the Friends of the Women's and Children's Hospital. Having attended Greenock Auxiliary meetings as a child, and knowing how hard Granny, Mum and my sisters work to raise funds for this cause, it was a comforting reminder that even though our family couldn't be in the hospital with us, they were all still there in some way.
Adam was just waking up when we were let into PICU. He was really drowsy and took a long time to really wake up and stay awake. Once he did he was starving hungry and was most upset that he was only allowed to have ice chips and chunks of Zooper Doopers for the first hour or so. Once he was allowed a sandwich, his mood improved quite a bit and the chatter started.
Adam's body struggled to regulate temperature post surgery but with a heat blanket and some food, his temperature came up. Nick finally felt comfortable to leave Adelaide and head home to check on the rest of the family. I was fortunate enough to be able to sleep in one of the family rooms just outside of the PICU. Even though I had many offers of a bed near the hospital for the night, it was comforting to know that I was seconds away if Adam woke up upset.
Adam was well enough the next day (Sunday) and after an MRI we were cleared to move out of PICU and back to the Kate Hill ward. He was bright, chatty and curious, and ready to play with his new remote control tractor from his bed.
Adam's curiosity really made his hospital stays and treatment so much easier. The only thing he is still a little bit fearful of is needles but he has taken everything else in his stride. Adam is always too busy trying to figure out how things work to be afraid. He now knows the hospital so well that he gives random strangers directions.
Our next few days were filled with doctors rounds, therapy follow ups a little bit of rest and lots of walks down to the play area at the end of the ward. We found out more about the surgery and had a healthy dose of reality when we found out how close we came to losing our boy. The reason Adam went downhill so quickly before surgery was due to a haemorrhage on the brain. We were told that had we still been in the Barossa on that Saturday morning, Adam would not have made it to the Woman's and Children's Hospital. I think we were so relieved to have Adam alive and well that we didn't really dwell on that particular fact until much later on.
Due to Covid restrictions, we were very limited to how many visitors we could have per day and at any one time, so we were grateful for the play therapist and spiritual support team and also for our family and friends and mobile phones. We were fortunate to have some friends close by who dropped in food for me and treats for Adam and a stash of Freddo Frogs to keep the nurses happy. My best friend Pepper was on the other end of the phone whenever I needed her and her support was invaluable. Not just because she is an absolute terrific friend, but also because this was not her first rodeo. Pepper had supported her Nephew Henry through his own Cancer journey in a really hands on way, she knew the hospital as well as any Hematology/Oncology parent.
While we were well cared for in the Kate Hill ward and had been told to expect at least a 10 day stay, we were very grateful to be told only 4 days post surgery that maybe it was time for us to head for home. So with one last eye test and one last hospital feast, we were allowed home, just in time for Adams 7th birthday. Adam had defied expectations and the doctors were amazed at his resilience. There was no reason to keep Adam in hospital any longer. Dr Amal discharged Adam with strict instructions to keep still and quiet. I'm not really sure that Dr Amal realised what she was asking, but we managed pretty well for a few days but I couldn’t keep him away from the farm forever. We don't tell Dr Amal what Adam got up to after that.
Things went a little bit quiet after Adam was discharged. We were meant to be handed over to the Oncology team at this point. Adams tumour had been sent to pathology and we were discharged from hospital with a promise of results within the week. As with most aspects of Adams journey, things didn't quite go to plan. Pathology were baffled by Adams tumour, it didn't match any common tumours and therefore the Oncology team were unsure how to proceed with treatment.
We met our Oncologist, Dr Maria Kirby on the 23rd of September, by this time Adams tumour had been sent to Melbourne for further testing and we signed Adam up for a German study of Paediatric brain cancers. It was hoped that this study would give us a more conclusive answer as to what Adams tumour was and how it might behave.
We also got to meet our Cancer Care Nurse that day. Nurse Kate became a huge part of our journey, she was a fountain of knowledge and built a rapport with Adam immediately. We are very grateful for Dr Kirby and Nurse Kate's honest approach and great support.
After a visit to the Neurosurgeon at the end of September, Adam was cleared to return to school in Term 4 and at the Oncologists instruction we went home and got on with life, Adam celebrated with a tractor ride. October was a fairly quiet month, we had a few appointments all with positive outcomes and Adam returned to School to show off his wicked scar and his new remote control tractor.
On the 18th November, as the state was going into lockdown, we were learning about Chemotherapy and Radiotherapy. A second Canadian study had given Oncology an 87% match to an Intracranial Sarcoma. Adams tumour was aggressive and there was a chance for regrowth so preventative treatment was the recommended option. I think we were a bit blindsided by this news. When we were discharged from hospital, we were made to feel like everything would happen quite quickly. After two and a half months of no news, I think we were lulled into a false sense of security that Adam might be one of the lucky ones.
We set up our Christmas tree early and the Christmas shopping got done in record time because we really didn’t know what Chemo would bring. On the 30th November Adam was admitted to hospital to have his infusaport installed. The infusaport is a small button like gadget that sat on Adams ribcage with a line going up to his neck and then down into a large vein. This was accessed for every chemo round by inserting a needle which had a 45 degree bend in it. This needle had padding put around it to stop it from moving and was taped down until chemo was finished. Adam recovered well from surgery and was out of bed and playing with his tractors in record time.
The day after this surgery, Adam began round 1 of Chemotherapy. Adam coped with Chemo pretty well, day 1 always knocked him around, he would vomit once in the evening and then sleep it off until the next morning. Day 2 and three he was chatty and alert, he craved bacon and salt and vinegar chips throughout his treatment but other than that he didn’t have much of an appetite for hospital food. I often ended up down at the canteen because what he had ordered the night before was not what he felt like by that night.
Adam started to notice his hair falling out in the middle of December, We had prepared him as best we could for this so as soon as he noticed that he was losing hair he decided that it all needed to come off. We were driving home from my In-Laws one night and he declared that tonight was the night, so even though it was late, out came the clippers.
It was strange being in hospital for round two of Chemo, Adam was admitted in the week between Christmas and New Year, and so everything was a bit quiet. Again, Adam breezed through Chemo with minimal side affects, and with a bit injection training for Me, we were allowed out after 2 nights. I don’t know who hated that final injection more, myself or Adam, but we both agreed that it was better than another night in hospital.
January 2021 brought on another MRI and the start of Radiotherapy. At the start of January we had our first experience in the Royal Adelaide Hospital when Adam had his marker CT Scan and had his mask fitted. The Staff at the RAH were fantastic and I love that we live near a city where our major hospitals can work together to deliver the best patient care regardless of age. On the 21st January, Adam began the first of 31 doses of Radiotherapy. We travelled down to the RAH Monday to Friday for 6 weeks. Nick and I were able to either go together or take it in turns, and our friends and family joined us on the odd trip to mix things up a bit.
I think Adam was a breath of fresh air for the Radiotherapy staff, My understanding is that the don’t treat a lot of paediatric cases and the ones that they do treat generally require some kind of anaesthetic or sedation. Once again, Adams curiosity outweighed any fear that he had and we spent the next 6 weeks educating the hospital staff on country music and farming. Adam was able to listen to music while he was in the machine and each days treatment only lasted the length of a standard radio play song. So each day we picked a different song, most of them country music and everyone in the waiting room got an education as well.
We got a beautiful surprise on day 1 when we walked in to see Adams Radiotherapy mask had been turned into a work of Art by the lovely Nurse Briony. Briony had never met Adam but she had been told about this really cool farm kid who likes tractors and cows. Briony decorates kids masks in her own time and I really hope that she realises just how special her talent is. Another staff member who went above and beyond was Nurse Sophie who made an epic sticker chart which also doubled as a joke of the day chart. All of the jokes were farm themed and corresponded to the animal or farm theme that was pictured on the front of the pouch.
During Radiotherapy, Adam was also taking a low dose oral chemotherapy so we still had to go into the W&CH for regular check-ups and to collect his weekly Chemo. We got very good at waiting and making ourselves comfortable. Adams resilience amazed us all, I had requested later Radiotherapy appointments so that I could go to work most mornings and have a productive morning before that drive to Adelaide rather than trying to work while exhausted in the afternoon. It was also in our mind that if Adam was well enough he might manage a morning of school here and there but I don’t think that any of us expected him to attend school as much as he did.
Six weeks went by far quicker than expected. Adam had minimal side effects apart from a tan mark on the back of his head. He loved having his head rubbed in with sorbelene cream morning and night and his favourite part of radiotherapy was getting a chocolate from the reception staff if he used his best manners. It was bittersweet to say goodbye to the Radiotherapy team but we left with great memories and a lovely going away present.
On the 22nd of March we began round 3 of Chemotherapy. Each round lasts 21 days, this is made up of 3 days of Chemo which for Adam was made up of 3 drugs, Isofamide, Etoposide and Carboplatin (ICE). The final component of Adams treatment was a drug called Pegfilgrastim, which I was taught to administer at home so that we didn’t have to sit in a hospital room for another 24 hours for no reason other than to wait for the right time to administer this injection. The remaining 21 days is monitoring bloods and symptoms. We were fortunate to have Adam recover well enough each time to complete his last four round of Chemo back to back and by the end of May 2021 Adams treatment was complete.
Since then, Adam has had an MRI every 3 months and we have 3-6 monthly checkups with the Oncologist, Neurosurgeon, Opthomologist and dentist at the Womens and Childrens Hospital. On the 11th September Adam had day surgery to remove his infusaport which we were all excited about because it meant that we didn’t have to travel to Adelaide every 6 weeks for a port flush.
We have found through most of Adams treatment that the medical teams have been very conscious of how far we are travelling and find ways to minimise that travel. Because Adam was well enough, we were able to get most of his blood tests done locally and someone from Oncology would just call us to let us know that everything was ok.
Our time in hospital was different to many other families that we had spoken to prior to starting Chemo. Covid and its restrictions certainly changed many things for us which made it hard on our other children who were often unable to visit and Jack in particular had to learn to roll with the changes, which is really hard for a child with Autism.
We were blessed with Alison, our fantastic Social Worker and regular visits from Nurse Kate, but we didn’t get many face to face visits with the Childhood Cancer Association. Towards the end of Adams treatment as restrictions were lifting we had a visit from some superheros and footy players which certainly livened up our days, and we were lucky to get a few visits from the Hospital School teachers.
I couldn’t tell Adams story without mentioning two education superheroes. Steph Docherty was Adams Teacher for the duration of his treatment. She supported Adam so much and really went above and beyond to make him feel connected to the classroom. She worked tirelessly to get him as much support as she could and though she is no longer teaching at Greenock Primary, she continues to support us by providing reports for a recent education assessment and by just checking in via email from time to time.
The other teacher is Sue Ellis, Sue has taught or supported all four of our children through their primary school education. Sue is the Indonesian teacher at Greenock and also provides extra support for individual students when needed. Sue really supported Jack with his social and emotional development and made a point of checking in with him and making sure he was ok through this whole journey. Ronald McDonald Education program had provided GPS with funding for 40 hours of tutoring support for Adam and Sue has been the perfect person to step into this role, making Adams sessions engaging and all about tractors.
We are incredibly blessed to still have our vibrant, inquisitive boy and when I get sick of answering the 50th question of the day or roll my eyes at his insistence on wearing rubber boots EVERYWHERE, I remind myself how close we came to losing him.
I don’t think many people used the words ‘blessed’ and ‘brain tumour’ in the same sentence but I do. We are blessed to have a loving family supporting us, we are blessed to have faith to keep us strong, we are blessed to have access to all of the medical minds at the Womens and Childrens Hospital and the global medical community that it is connected to. We are blessed to have hard working volunteers such as yourselves to make the W&CH even better. Most of all we are blessed that we live in a time of modern medicine, giving the gift of life to our little cowboy”.
Thank you to Lisa, Nick and Adam for sharing their story and for all the hard working members of the Friends Auxiliary Division that raise funds to support families such as Lisa’s.
New members are always welcome within the auxiliary groups and anyone interested in joining can contact the Friends office on 8161 8445.
For more information about the Friends, or to make a donation please visit the website https://wchfriends.com.au/ or contact the office.