Meet Our Amazing Boy, Connor
Our 2.5-year-old son, Connor, is the light in every room he enters. He started smiling and laughing very early on and hasn't stopped since. He has an incredibly cheeky, kind, and sweet personality that draws everyone in. The only time he would sit still is to read a book. He loves cuddles, especially with his 1 year old little brother, Lachie, who he was instantly smitten with. Right now, he should be running around, swimming in the pool, playing with his trains and dinosaurs, dancing to The Wiggles, asking us to read Bluey stories and getting ready for Santa, but instead, he is fighting the fight of his life.
The Day Our World Stopped
Just a few weeks ago, on Sunday, November 2nd, we brought Connor to Perth Children's Hospital (PCH) because he had been unwell for a few days and was dehydrated, lethargic, and couldn't keep anything down. We thought it was just a nasty bug and after some IV fluids we would be on our way home.
When they said they were going to do a CT scan just to cover all the bases we never thought it would turn into this nightmare. A couple of hours later we heard the words no parent should ever hear and in an instant our lives were changed forever..."we're sorry, the scan shows a large mass in the back of Connor's brain".
The MRI early the next day confirmed the worst: a large aggressive tumour (Medulloblastoma) in his cerebellum, with multiple spots already spread throughout his spine and in other areas of his brain. Our beautiful boy was immediately facing the battle of his life against aggressive metastatic cancer.
Connor’s Intensive Treatment Plan
Connor’s treatment journey is painful, intense and will span at least 8 to 12 months, requiring our family to live primarily as inpatients in the hospital.
Surgeries & Recovery:
Our brave little man has already undergone two major surgeries. A 10 hour procedure to remove the main mass and a follow-up surgery to place a permanent shunt due to fluid and pressure build-up in his brain. He also needed a third procedure to fix a wound leak and place his central line. He is recovering well, despite experiencing some Posterior Fossa Syndrome (PFS) deficits from the major surgery which are affecting his emotional regulation, swallowing, strength and coordination, including left side facial paralysis and a lazy eye. He is doing daily OT, Physio, Speech, and music therapy to recover.
High-Dose Chemotherapy:
The start of treatment begins this week, 5 weeks after we first found out. To begin Connor will face three rounds of the highest, most intense chemotherapy, each lasting 4-6 weeks. We expect to be in the hospital for a minimum of four continuous months before he may get a few days at home between the next round of treatments.
Future Complications: Due to the severity and aggressive nature of the treatment, Connor is highly likely to need hearing aids as one of the chemotherapy drugs is ototoxic and will permanently damage his hearing. However it's likely there will be other long term or permanent complications from the surgeries and chemo treatment.
The Need for Specialised Treatment: Proton Therapy
While the doctors are aiming to avoid or delay radiation, the aggressive, metastatic nature of his Medulloblastoma means we must be prepared for the highly likely need for alternative treatments if the chemo does not work effectively.
The most promising, targeted option is Proton Therapy, a specialised form of radiation treatment currently unavailable in Australia. The medical team has confirmed they can help us secure approval to get Connor the specialised treatment in the United States if needed.
Should Connor require radiation, this treatment provides the best chance of attacking the remaining cancer cells while preserving his quality of life and future development. The potential trip would involve weeks or months of treatment, travel, and accommodation.
How You Can Help Team Connor
We are asking for your help to keep our family united and support Connor through this fight.
This devastating news has completely upended our lives. While we are fortunate to have some support, the financial pressures surrounding this long-term fight, especially the potential need for overseas treatment, are immense. This initial goal will allow us to immediately focus on Connor's care without worrying about how to fund the necessary family support, the potential overseas travel costs, and his vital long-term rehabilitation.
We have three crucial areas of need:
Keeping Our Family Together for Proton Therapy:
The potential treatment abroad requires at least a 6 to 8 week stay. MTOP only covers Connor and one support person's basic expenses. We need to raise funds to cover the airfares, accommodation, and living expenses for April and his little brother, Lachie (1 year old), so our family of four can remain united during this critical time.
Intensive, Uncovered Therapy Needs:
Connor is currently experiencing Posterior Fossa Syndrome (PFS) deficits and may require ongoing, specialised Speech Therapy, Physiotherapy, and Occupational Therapy. We may need to access private, intensive sessions that are not fully covered by insurance to help him recover his motor skills and emotional regulation after the year or more of chemotherapy/radiation.
Medical Equipment & Family Support:
The highly aggressive chemotherapy/radiation treatment has a high risk of permanent side effects, including hearing loss. Funds will go towards purchasing Hearing Aids (highly likely to be needed) and other medical equipment not fully covered. We also need to cover daily necessities and support costs during the 8-12 months of inpatient hospital stays.
Every share, every thought, and every dollar helps us fight for Connor's future. We understand if you cannot donate but if you can share with friends and family it would mean the world to us. Your support provides us with the priceless gift of being able to focus on keeping our son alive, staying by his side throughout and ensuring he gets the best possible chance at a long, healthy life. Please know that we are eternally grateful and thank you for standing with us in this fight.
We will keep everyone updated on Connor's journey with regular updates on this page.
With love and thanks
Alex, April, Connor and Lachie