“My advice would be ask loads of questions and stay off Dr Google!”
Meet Kate, a ferocious hard working mother who would do anything for her children. Four years ago she was diagnosed with Breast Cancer but refused to let this bring her down. During that time her young son Josh was also diagnosed with an AVM (Arterio Venous Malformation) and had to undergo invasive surgery where he was and still is at risk of losing his foot. This is a family who are true fighters, not only do they stick together but will do anything to help others in the community anyway possible. This is Kate’s carer story. Cassie x
My name is Kate and I am a working mum with two children Joshua 10 and Jenna 7. When Joshua was five he was diagnosed with an Arterio Venous Malformation or AVM in his left foot. Essentially this is an abnormal growth of blood vessels which causes significant pain, swelling, abnormal bone plate growth and grows rapidly without regular treatment. It can be life threatening.
The impact and cost
Being a carer has impacted on our lives significantly as Joshua’s medical treatment requires us to travel to Melbourne every three to six months dependant on test results. A few times we have had to do trips a couple of weeks apart as test results have not been good. This usually requires us separating as a family as financially we just cannot afford to travel and accommodate ourselves in Melbourne for long periods. This also has significantly impacted on our daughter Jenna who has developed anxiety around our family being separated. We have to take time off work, which for my husband is unpaid and means holding down regular employment is also tricky.
The children have missed ALOT of school which makes maintaining friendships difficult and Joshua has been subjected to bullying at the possibility of becoming an amputee. Joshua’s diagnosis has made our lives less carefree, we have to plan around each medical trip and our finances are geared around it! As a person I have become a fierce advocate for my son but in the process have probably neglected myself. Having to work means I have not been able to find time for physical exercise which was hugely important to me. I am still trying to work out how that fits so its a work in progress.
As a carer the positives I see is how my family pulls together when Joshua needs treatment interstate. Whether its school providing work, our parents cooking meals or lifts to the airport and friends volunteering to feed our dog nothing is too much trouble. The community in which we live is truly wonderful.
The greatest challenges we face as carers is the lack of understanding by medical professionals of Joshua’s condition in our home state. When he has blood clots or significant pain in his foot they treat the symptoms not the underlying cause. This also promotes a lack of empathy amongst some practitioners we come across as they are of the belief Joshua losing his foot is not a significant decision to make. Having a vascular team here in Adelaide would be fabulous and would alleviate a lot of stress but that is probably unrealistic. My biggest issue is having to fill out triplicate paperwork each time we are in Melbourne with the doctors and having to liaise with Womens and Childrens Hospital here in Adelaide around flights. Joshua’s condition is not likely to change so a streamlining of this process would be great.
Hopes for understanding
Medical professionals need to realise that parents are the best advocate for their child. They can give a clinical opinion but also need to be open about letting parents ask questions and making informed decisions. I know when I have gone to appointments with a list of questions its usually met with an eye roll or a sigh but it doesn’t bother me. I sometimes think trainee medical staff need to do a unit on patient advocacy!
My advice would be ask loads of questions and stay off DR GOOGLE! By all means do your research but make sure they are scholarly articles not unsolicited material. Depending on your child’s diagnosis if there is a Not For Profit organisation which can support you, reach out to them. Take another adult with you to appointments as quite often your head will be spinning and you’ll forget what is said. Take time to breathe. Sometimes tough decisions don’t have to be made immediately. Take a walk, have a cry just clear your head before you make those decisions.
The only other advice I would give is life goes on after diagnosis! Its a redefinition of life, a new version different to before but once you manage to master that you will laugh again. Take the time to smell the roses and check out of life when you can. An overnight stay away from home can do the mind wonders.