Help with costs such as emotional support; integrative doctors; nutritional supplements; alternative health treatments, and loss of income.
In August of 2021 our precious 2 year old was diagnosed with ATRT, a rare and very aggressive form of brain cancer. Fast forward to the start of 2022 and boy has he been through a lot!
He had his 3rd birthday in hospital
He has completed a gruelling 5 round Chemo regimen, he has hearing loss and will need hearing aides and is re-learning to walk
We had a set back on treatment where another lesion was found on his brain - devastating at first (it was inoperable due to guarantee of some level of permanent paralysis) but through seeking medical opinion overseas we look to be in a better place! As such, our path saw us in the US until roughly the end of April as we were granted govt funding for Proton radiation here as it is not available in NZ. Though our costs of living have increased a lot as a result of this and Dad has now run out of leave for the remainder of 2022.
As we venture further through treatment, we are also looking to seek the best possible maintenance Chemo for our son. This Cancer has a very very high relapse rate and while the standard protocol doesn't include maintenance Chemo, many Doctors overseas have been trialling different checkpoint inhibitors and other Chemo drugs with some success, usually at relapse but now often in an effort to avoid relapse. Our Doctors are working to come up with an agreeable plan but depending on how we move ahead, with the remaining uncertainty from the second lesion and the highly aggressive nature of ATRT, we need to ensure that we are still able to seek second opinions and be ready to potentially get overseas again at very little notice. A lot of kids relapse as little as 3 months out of treatment. I am currently looking into options and there is a very high chance that a drug we may need will not be available in NZ. Regardless, maintenance means we stay on this journey for at minimum another year and Barnaby continues to take life altering (and saving) medications.
We will keep pushing for our beautiful boy so that we can make sure we hit it right the first time, and so that we are prepared for any uncertainty.
Living expenses during medical treatment overseas
Bills and expenses at home
Further second opinions as we attempt to make the best possible choices for our sons treatment over the next 1 - 2 years
Radiation tick 16 April 2022
I want to start again by thanking all of you for your endless love and support. Today is a huge milestone for us, and Barnaby especially! This absolute superstar finished the radiation portion of his treatment this morning and rang the bell to show how hard he has worked these last 6 weeks. This feels like such a huge win! We are so proud of you Barnaby, you amazing wee dude ❤️
We are heading home to NZ next week and we are all beyond thrilled to be back on home turf soon. But the reminder prevails that the journey isn't over as we set up our first appointments back on the ward in Christchurch. Regardless, nothing could diminish how good it is to tick radiation off of Barnaby's plate - you have done it wee man, and we will all keep pushing forward with you 💙
Love ya Boogie xx