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
No evidence of disease 27 June 2022
And just like that, we can breathe a tiny bit more.
Barnaby had his first official MRI scan out of treatment last week. And today we had the greatest news confirmed, no evidence of disease.
He had his last round of Chemo just after Christmas and we finished radiation 9 weeks ago. We made a decision recently to not use any further Chemo, those closest to us may know that maintenance Chemo was something we pushed hard for initially, but in reality the evidence isn't there that it would do any more 'good' which actually means the toxicity of it could potentially only do harm, potentially a lot of harm. We have started a different journey, and we have faith that Barnaby sits in the best prognostic category to continue to beat this, so we are focussing on healing his body. The treatment he has had to have to get this far... It is a lot.
This kid is incredible, the kind of incredible that takes my breath away. He loves his nurses, he loves his people, he just loves loving. And that brilliant and beautiful nature just sums him up. Cancer can f right off because even in some of the darkest days, it never took your spirit Boog.
Barnaby we are endlessly proud of you.
I have learnt a lot about Cancer through our journey, one thing that sticks with me currently is that when it is invisible and you don't know its there, or you can't tell someone is fighting a battle, then you just don't know. Remember that, remember that you don't always know the pain some people are living with on the inside. Barnaby's hair has regrown and he doesn't have a central line... The obvious signs are fading but his story remains. And it is a big one.
Our journey doesn't end here, Cancer will be a part of our lives but it won't ever take us over. And while we kick it to the curb today, we have many scans ahead over the next 5 years to make sure it stays down.
My heart goes out to all of you fighting this battle for you, or for your loved ones.
We will be right here attempting to make some sense of wtf just happened this last year and most importantly, loving every day along with Barnaby and Ziggy 💚
And on that note we will take down this page and we sincerely hope to never need Give a Little again. But to those of you who have helped us, please know that your support has helped us through immensely stressful times. And that is so important.