While many people look at their 15 year old daughters they may think to themselves, “I hope they don’t get their heart broken, and that they grow up to follow their dreams and experience all there is to offer.” Not to forget the thoughts of, “They better stop this attitude or my hair is going to fall out soon.” Yes this was us but this all changed on December 19 when my wife, daughter and I heard the words, “Jesse has cancer.” We were in a little bit of shock but strangely had a laugh due to our daughter saying, “I told you so. Now I’ve won the bet, I can get a nose ring.” This was the type of personality that carried our daughter for the next 3 ½ years. No tears for this diagnosis, just jokes and her supporting us. This is when our whirlwind journey began.
I went home to collect our then 11-year-old son and collect more clothes while my wife and Jesse began her chemo path. First round of cancer was one year of Trish and Jesse in Brisbane while Bailey and I would visit every fortnight. Chemo took a toll on her body and our girl was to remain in a wheelchair for several months before learning how to walk again. This was heartbreaking for Jesse as she loved dancing but used every opportunity she had to tease her mother with impromptu dance sessions. Jesse lost an incredible amount of weight and had to have a nasal tube. Doctors and nurses were amazed by her strength to keep a smile on her face and push toward a cancer-free life while supporting other cancer children along the way.
In the last three and a half years we have had an oven, fridge, TV, lawnmower and car die, four new car batteries, one alternator and two reminder notifications for bills. We have travelled more than 15,000 km and quit jobs. Our son has been in between two schools, lost a girlfriend and had not seen his mum and sister for about 18 months out of the last three and a half years. Plus we have celebrated two 15th birthdays, a sweet 16 and an 18th away from home, friends and family. This may seem overwhelming but throw cancer in to the mix and it takes an emotional, mental and physical toll. Cancer does not stop at treatment. Life does not pause for it. It does not discriminate.
Coming home in December 2016 was not the end of treatment, she still underwent daily oral chemo, monthly lumbar punctures and trips back and forth to Brisbane until we had the all clear in January 2017 and last oral chemo in April 2017. It was if a weight was lifted from our shoulders until July 2017, Jesse mentioned having headaches and blurry vision. Once again back to Brisbane via Flying Doctors and a diagnosis again of CANCER. As our daughter comforted her mother, she apologised for what was about to come. Our daughter was sorry that our family was once again going to be uprooted and all of us quit our jobs and move to Brisbane for a bone marrow transplant. Her donor was from overseas and we are forever grateful for their donation. This trip was made harder for our daughter as she had fallen in love for the first time and did not want to put her partner through this also. She was heartbroken by having to disrupt her brother’s life again. Six and a half months of isolation and painful treatment and we were able to come home in February.
Our life has provided us with many challenges and once again our crew had been hit again. On February 21, 2018, two weeks after coming home from bone marrow transplant, Jesse was in Brisbane for a routine appointment and we were informed she had contracted CMV (Cytomegalovirus). Not a great one to have with a low immune system. Sadly this has caused havoc with her lungs and kidneys. Her condition worsened over time and had badly damaged her lungs and kidneys which left her in ICU on an ECMO machine (lung bypass/life support) to oxygenate her blood to support her lungs and a dialysis machine for her kidneys. Jesse was also heavily sedated and intubated to keep the lungs open. The hospital had arranged for trial t-cells from America to assist with the healing process. Sadly after 6 weeks, we made the heavy hearted decision to turn off the machine our baby girl, our 18-year-old little woman was on. Her body was struggling and shutting down and surrounded by family and friends, we said goodbye to our ANGEL on April 29, 2018.
We have always been overwhelmed with the love and support we have received over the years and also now in this especially trying time, we are eternally grateful for the family, friends and strangers who become friends for this support. Although the future is unknown for us now, we will never forget the amazing young lady who touched so many lives with her zest for life.
This situation is something we wish would not have happened to us and the too many people diagnosed with cancer each year. I would truly appreciate everyone’s help to raise funds and awareness for this life-changing disease. As I do not have the hair for it, I will be growing my wild beard to shave to raise money to support families to help ease some of the burden during such a trying time. I will be shaving my beard off on March 16, 2019.
The link to donate is:- https://secure.leukaemiafoundation.org.au/registrant/FundraisingPage.aspx?RegistrationID=720994