A marathon for Lachie Love's Bucket List!
Aunty Erin ran the Whangamatā 1/2 Marathon and Nikki and Husband Frank are running Queenstown 1/2 Marathon for Lachie’s bucket list.
Auckland
Lachie is 9, he has a terminal brainstem tumour called a diffuse intrinsic pontine glioma (DIPG). When diagnosed kids are usually given a prognosis of 9 months, and families are told to go home and make memories. It’s brutal and still there is no known cure. This fundraiser is to help give Lachie some fun experiences and create lasting memories for the family.
Diagnosed December 2022, Lachie is feisty and he has outlived the the 9 months. Lachie’s whānau, Mum Liesje, Dad Andy and younger bro Harry have been through the wringer.
In return for your donations Erin, Lachie’s Aunty is running the Whangamatā 1/2 in September and Nikki and Frank are running the Queenstown 1/2 Marathon on the 16th of November. Liesje is Nikki’s bestie. Lach and Finn, Nikki’s son are two months apart in age and Nikki’s twins Kate and Isla, and Harry are the same age.
We know things are tight right now, so we would appreciate even the smallest donations! ALL of the money goes to Liesje, Lachies mum, so far the money has already funded a trip to Melbourne for the while family. Since then there has been expeditions such as to museums, going to meet a gang of husky’s.
Nikki Fahey's involvement (page creator)
Lachies Mum Liesje and Nikki have been close friends for decades, Lachie and Nikki's son Finn are the same age and besties.
Use of funds
The money will go to bucket list adventures of the family's choosing, like travel/ a concert or outings of Lachs choosing, equipment and day to day expenses to cover the support he needs.
This is our other Givealittle page for the on-going costs for his treatment https://givealittle.co.nz/cause/lachie-needs-your-help
Latest update
MRI results 5 December 2024
We had our quarterly MRI yesterday and we got the results from quickly. Maybe it was because the Oncologist said he needed to talk to me alone, or that he started with "it isn't good".
The good news is that the tumour doesn’t look significantly different. However, there is a big cyst inside the tumour that has grown between the scans (seems larger than the tumour was at the last scan). They’re not sure about the options now.
The medical team could potentially drain the cyst but this has some risks and often cysts refill again in the future. They could possibly insert a catheter to help with draining if it refills. As it’s a cyst, it won’t respond to radiotherapy or steroids necessarily. It is also unclear what the impact might be for irradiation with the cyst there. And cysts can also become inflamed with radiotherapy.
The cyst can has the same impact as the tumour in terms of pressure on the brain, blood vessels and the system that drains the fluid for the brain (increasing the potential for hydroencephalitis again).
The medical team meet Friday to discuss options but the onc didn’t sound overly confident in any option (although noted that the options weren’t his area).
So we’re now we wait to find out if the back-up option for progression (reirradiation) is an option. In the mean time, we will plan an extra special birthday for Lachie (he turns 10 on the 17th of December) and Christmas (I'm thinking over the top Christmas lights and are welcome to suggestions!).
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