20 March Update - Written by Kara
19 June 2021
It’s been 6 weeks since our lives changed forever. I’ll never forget the feeling, a day after being told Marcus had a stroke, when the doctor came in with a serious expression and closed the curtains around the hospital bed. Our stomachs dropped, we knew instantly that it was worse, and then the doctor told us that it wasn’t a stroke, it was a large brain tumour in Marcus’s right frontal lobe.
Last week we experienced a similar feeling. We met with Marcus’s oncologist to discuss his histology results and treatment plan. We were expecting a Grade 2 (of 4) Low-Grade Glioma, but histology confirmed a Grade 3 Astrocytoma, a high-grade malignant tumour. Unfortunately, the surgeons were not able to remove the entire orange sized tumour; part of it is too close to Marcus’s motor cortex and too dangerous to resect, so about 1cm remains. Because of this, Marcus is going to be having the most aggressive treatment currently funded in NZ. This is six weeks of radiation therapy alongside concurrent oral chemotherapy Temozolomide, followed by another six cycles of Temozolomide over six months.
Hearing this was like taking a sucker punch to the guts; we were winded for a while and we are just starting to breathe again. As can only be expected, last week was a mess. A dark week full of shock, grief, and painful emotions. Feeling like our future had been ripped out from beneath our feet - everything you assume is guaranteed to you in life when you are young. We are finding out earlier than some of our friends that this is not the case. Nothing is guaranteed. That is part of the process we have to go through, and there will be more dark days ahead, but this week has been better. The way forward for us is to accept the diagnosis, not the prognosis. We are choosing not to live based on other people’s stories. Ultimately, we will make our own story through this journey. We have chosen to focus on the next six months and put our energy into Marcus regaining his health.
On that note, Marcus is absolutely smashing his rehabilitation! He has gone from learning how to walk again in a harness with manual manipulation of his left leg, to walking in the harness without assistance, and is now out of the harness and learning how to walk short distances with a quad stick. Today, we got the go ahead to take outings on the weekends to wheelchair accessible places, which is very exciting since Marcus hasn’t seen the outside of a hospital for almost 2 months! We both can't wait until Marcus comes home for weekends and later comes home and continues his treatment as an outpatient. I am beyond proud and inspired by how hard Marcus is working towards his goals of coming home and regaining his health and fitness.
Highlights of the last few weeks include:
- When Marcus’s physio - having only worked on his leg until this point - lifted his right arm to teach me a stretch. The split second of shock and bewilderment on his face as Marcus lifted his own arm, before he realised he had the wrong arm, was absolutely priceless
- Having a shared dinner with special friends out in the lovely courtyard under the grape vines, it was the closest we have felt to “normal” in a while
- Marcus walking without the harness and being able to give him a standing up cuddle
- Being given the go ahead to go on day outings on the weekends
- I cleaned/water changed a 300L fish tank and all the discus were still alive when I got home
- Fur baby visits
Thank you to everyone who has given us support and positivity, visited, cooked meals and baking, donated to Marcus’s Givealittle page, and helped us in any way. Special thanks to the UCOL staff who dropped off a huge box of goodies today, that will keep Marcus going for a while!
Some things the gifted money has paid for so far include: Accommodation in Wellington, comfy clothes and pjs for Marcus, tech solutions to make things more accessible, books for my research, acupuncture, supplements Marcus will be taking, prescription CBD oil, and a consult with an integrative oncology practice overseas.
Marcus is starting radiation and chemotherapy next week. We are combining our strength and positivity, leaning on each other and our family and friends, and looking towards discovering our new normal at the other end. Please keep us in your thoughts, and keep sending positive vibes our way. xx