Please help us host a party for our town.
Dexter (Dexter’s webpage – lovedexter.weebly.com)
Prematurity and his first year
Last year (2012), our son Dexter was diagnosed with hepatoblastoma (liver cancer). Our hearts broke and we hardly had the energy to face the world. This was just one thing in a number of issues Dexter had faced in his 12 months of life. Dexter was born prematurely at 31 weeks, weighing just over 1.5 kilograms. He spent three months living in a Sydney neonatal intensive care unit, a two hour drive from our home. This resulted in our family being separated at a time when we should have been together. I stayed on the floor of a friend’s small unit, while my husband stayed at home for work commitments. Dexter’s fourth month was spent living in a neonatal intensive care unit in a local hospital.
A routine head ultrasound at one month old, detected his brain damage. He needed significant assistance with his breathing for at least three months. During this time, he endured numerous tests, x-rays and scans. He had difficulty putting on weight as he had an intolerance to anything except breast milk. He had severe reflux, which also prevented him from growing. He stopped breathing with both his two and four month immunisations.
Dexter spent a total of 122 days in three different hospitals. He spent his first father’s day in hospital. He came home weighing just over 3 kilograms. I spent all but two days sitting beside Dexter. On the two occasions I had a day off from the hospital, the following day bad news was given, such as his brain damage. Due to Dexter’s difficulty with feeding, I expressed breast milk for the four months he was in hospital and for two months following his discharge.
When he was ten months old, Dexter was diagnosed with cortical vision impairment. We are still not sure how well, or if, Dexter can see. At 12 months old, our son was diagnosed with cerebral palsy. But, due to his time in hospital, he still has not been given a specific cerebral palsy classification. Dexter has never followed the text books... always doing things his own way. As such, it is difficult to accurately diagnose him.
Dexter had long, thick eyelashes and quickly won the hearts of his nurses and doctors.
When Dexter was four months old, he came home wearing a breathing monitor, which clicked each time he breathed and alarmed each time he stopped breathing; a regular occurrence during the early days at home. Dexter’s determination and fighting spirit helped him overcome the prediction of him coming home attached to a feeding tube and oxygen prongs.
Just after Dexter’s first birthday, his paediatrician detected his enlarged liver. He sent us for blood tests and ultrasounds. These indicated he had a mass, needing treatment. We were sent to Sydney for a CT scan, and our worst fears were confirmed when the specialists spoke the word “cancer”. Lumps were also detected on Dexter’s lungs and he was scheduled for an immediate biopsy. Thankfully, these lumps were cleared as simply enlarged lymph nodes and not additional cancers.
Dexter had surgery (lung biopsy and insertion of his central line) in October 2012, which went to plan. Unfortunately, his recovery did not. Dexter was given pain relief, which he was allergic to and he stopped breathing. This was unexpected and Dexter needed to be resuscitated (twice in one day). This meant Dexter spent much longer than one night recovering in hospital.
Once he had recovered, his chemotherapy treatments began. Typical liver cancer treatments can cause permanent hearing loss in patients. With Dexter’s already diagnosed vision impairment, the thought of him losing his hearing as well was terrifying. We convinced his oncology team to devise an alternate treatment for our son. They developed a very individualised plan for him, consulting oncologists all around the world. The treatment they gave him was relatively new and he was closely monitored.
Dexter had four rounds of chemotherapy over the next four months. He received two treatments of 96 hours continual chemotherapy and two treatments of 48 hours. He became sick after his first round of chemotherapy and required four days hospitalisation and antibiotics.
After the first round of chemotherapy, Dexter’s hair fell out in chunks and our hearts broke with every strand. We took him to a local barber and had his head shaved. Dexter now looked like a cancer patient. His beautiful eyelashes and his eyebrows became thinner and thinner, until they were pretty much gone.
After four chemotherapy rounds, the surgeon was ready to operate. His surgery went perfectly. The predicted 24 hour ICU recovery period was drawn out to six days. Once again Dexter reacted to his pain medication and stopped breathing. He also developed numerous infections, which needed isolation and treatment. All together, Dexter spent 11 days in hospital, recovering from his surgery.
Once he was well enough, he started his final two rounds of chemotherapy. These were both 96 hour treatments. He required hospitalisation for platelet and blood transfusions after each treatment. We travelled to the local hospital weekly for blood tests and line care to ensure his chances of infection were minimal.
Following a scan in January 2013, Dexter was given the all clear and our hearts learned to sing again. He was scheduled to have his central line removed in February. A day after getting this call and the day before this final surgery was scheduled; Dexter developed an infection in the line. This resulted in an ambulance ride from our local hospital to Sydney. Instead of a simple day procedure, Dexter had another four days in hospital, to overcome the infection.
Throughout this eight month ordeal, Dexter rarely complained and never made a fuss. We can see how sick Dexter really was because we can see how much energy he now has.
As luck would have it, the day Dexter’s mass was detected, we discovered he would be a big brother. His sister, Charlotte was born in January 2013, a week before he was cleared of cancer. The pregnancy was stressful because we had endured many bad experiences with Dexter. To top it off, he was considered “cytotoxic” for almost two weeks during each of his chemotherapy treatments. His body fluids were therefore considered toxic to us and the unborn baby. Extra care was needed just to give him a hug and kisses were out of the question during this time.
What our community did
A fundraiser was planned for our son after his initial cancer diagnosis. It was planned so we could focus on Dexter and not worry about our bills. Being a small, coastal community, word soon spread about our little boy and the planned fundraiser. Donations started flooding in and our community began showering us with love and support. Dinners were prepared for us for the nights we returned from chemotherapy treatments. Groceries were dropped at our doorstep. Hospital care packages were delivered to help us through the long days and nights. Letters of support and love were sent from family, friends and strangers.
Not knowing how Dexter would cope with his chemotherapy and after being told his treatment only had a 60% success rate, the fundraiser was proposed, planned and held within two months. People in the community and further afield, donated significant prizes for the secret auction and countless donations were provided for the raffles. Tickets to the event were sold very quickly, and we needed to increase ticket numbers twice. People came from all over Australia to support us.
A local and very popular musician (“Woody”) offered to play at the venue for free. Two local men offered their skills and time to emcee the night. The venue was provided free of charge and food was provided at cost price. A local real estate provided an auctioneer which allowed the event to run very smoothly and professionally. The local newspaper wrote about Dexter on three occasions – once before the event and twice after the event. We have informed them that Dexter has now completed his chemotherapy and has been cleared of cancer.
It was hoped we would raise $15,000. To us, this seemed an unrealistic goal and well beyond our reach. Our local community reached so far into their pockets, and showered us with so much love and support that we actually raised well over our targeted amount.
We used facebook and a Dexter webpage to promote all of the people and businesses who helped us. We thanked them in every way we could... but we would love to give them more.
While Dexter’s 21 months have been filled with devastating news and heartbreak, he has filled our lives with love and shown us strength we may not otherwise have known. He is truly one of the special people... the ones who connect people and exude goodness. People love him, instantly... from surgeons, to ward nannies, from businessmen to truckies, strangers to his own family. He is special and we are lucky to have him. He generated so much interest from family and strangers, that a blog was established, so we could share his story with them.
Can you help us?
We would love to host a party for our town. We want to say “Thank You!”
We would love to invite everyone who supported us... everyone who loved our son... everyone who helped us get through the worst eight months of our lives.
Kiama, our town, has a pavilion which could hold 350 people. Around 200 people attended our fundraiser. We’d love to have our musician back, playing again and being paid. We’d like to invite the doctor who diagnosed his cancer, his surgeon who operated on him and his oncologists who researched in order to better cater to Dexter’s individualised chemotherapy treatment plan. We’d like to invite his nurses, who saw him on a weekly basis. We’d like to invite the barber, who shaved his hair. We’d like to invite our family and friends, who held us up and supported us through this awful time, to join us in a happy celebration.
Our backyard is too small... our barbeque is too small...
Ellen, please help us host a party for our town.
Lenice and Andrew, Dexter and Charlotte