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Lachie Love needs your help!

  • MRI results

      5 December 2024
    Posted by: Liesje Love

    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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  • Updates and page is closing (we think!)

      15 November 2024
    Posted by: Liesje Love

    We just wanted to reach out and say that we are extremely, extremely grateful and overwhelmed by the support to date. Your donations have meant that we have been able to do so much over the last (almost) two years - a lot more than we thought we would be able to do - due to both your generous support and Lachie defying expectations! We are hoping for some more adventures soon and will be renovating a bathroom so that Lachie has somewhere he can bathe as at the moment that only bathroom that is accessible, isn't able to be used safetly by Lachie.

    If you want to follow along for updates on how we are doing and out next adventures, our amazing friends, Nikki and Frank, are running the Queenstown Marathon for Lachie tomorrow. You can get an update on how they are doing here https://givealittle.co.nz/cause/a-marathon-for-lachie-loves-bucket-list and probably future updates if we have reached the time limit for this page :-)

    Again, thank-you so much everyone, thanks to you Lachie has been in a supercar, swam with a dolphin, been to the Gold Coast and been on theme parks, had multiple trips and adventures around NZ, bought SO MANY nerf/X-shot guns (honestly, I think we need shares in Zuru) and lego (we had to get an extra bag on our last trip), taken his bestie away for a weekend, got a kitten, been able to access treatment that isn't funded and so much more. We couldn't have done it without you as our team behind us.

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  • Update!

      31 May 2024
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    Hey everyone, long time no update! Lachie is doing quite well given the circumstances. His latest MRI showed the tumour is stable which is amazing, we're so grateful for all this extra time we're getting with him. The oncologist told Liesje & Andy to book another holiday and make as many memories as they can, so they're looking at getting to Melbourne at the end of June to take Lach to the Harry Potter Hidden Forrest exhibition, among other things.

    Liesje's good friend Nikki is running a marathon in November, and Auntie E is running one in September, to try and help raise funds for his Melbourne trip, which is amazing, you can follow their updates over at Nikki's page - https://givealittle.co.nz/cause/a-marathon-for-lachie-loves-bucket-list - go ladies!!

    As always, thanks again for all your love and support, it's such a dark path to be walking but having you all behind us really does help!

    Nikki

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  • Dear Santa....

      11 December 2023
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    Merry Christmas to all of you who have followed us on this journey and supported our family. It's been a while since an update, so I'll start with some good news. Lachie had an MRI a couple of weeks back which showed the tumour has shrunk a little bit again, so something seems to be working with the supplements he's on! He's working hard at private physio and making progress with being able to take a few steps again, which is amazing to see. Unfortunately he's also having some big emotions and behaviours (who can blame him, he just wants to be a normal kid!), which has resulted in another smashed TV (TV number 3?).

    Lachie turns 9 on Sunday, a milestone we weren't sure he'd hit, so we'll be celebrating with all his friends and family in some way that Lachie can participate in, which I'm sure will involve Nerf Guns!

    We're coming up on 12 months since this nightmare began, and we're extremely grateful for all the time we get with him, considering that the average life expectancy is 9 months. 12 months off work for Andy to take care of Lachie full time would certainly have taken a higher toll financially if it weren't for all your generous donations, so once again thank you so much for your support!

    I hope everyone has a happy holiday period, enjoy time with your loved ones!

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  • Make-A-Wish Party

      31 July 2023
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    Hello everyone!

    Time for a quick update. Lachie is doing reasonably well, staying out of hospital and able to get out and about to do a few things.

    On Friday we had his Make-A-Wish party through the Make-A-Wish Foundation of New Zealand. He wanted a big party will all of his friends and family, so we all descended on Arena Albany for arcade games, slushies, pizzas, inflatable obstacle course and Nerf Wars! He's always loved Nerf Guns, and was super excited to hear he got to keep all of the guns! This is still something he regularly does, often using his Opa as target practice!

    He's working hard at physio to get more mobility, and recently acquired a walker to give him a bit more independence. At this stage there is no further treatment plan.

    Everyone knows the old saying "when it rains it pours", and unfortunately Liesje & Andy have been hit with something new to stress about. Their mortgage has always been with HSBC who have now withdrawn from the NZ Market, meaning they need to remortgage at a much higher rate, however, the renovations on the house aren't complete, meaning no CCC, Andy isn't working as he's full time carer for Lachie and Liesje is working less to spend time with him. There's also 'unusual' spending for bucket list items and extra medical expenses like private physio so they can't get a new lender. If anyone has any tips, please let us know!

    Once again we're extremely grateful for your support!

    Nikki

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    • 31/07/2023 by Trevor

      You could try Ian Woods Mortgages.A great guy to deal with.If anyone can help,then I’m sure it would be Ian

    • 01/08/2023 by Nicola Hunt

      Hi Nikki, Nicola here - If you have a moment to call in regard to the tips comment please call me - 0226569443 X

    • 01/08/2023 by Chris

      Hi Nikki, Chris here. I have been in touch with some friends at a bank and can put you in touch with them. Call me on 0212429447. Cheers

  • Another kick in the guts

      20 June 2023
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    Hello everyone,

    Time for another update, which is one we were hoping not to write. Despite Lachie being on a diet to bring his liver enzymes down, and Liesje & Andy doing everything they possibly can to get Lachie onto the chemo trial, it wasn't enough. His liver enzymes are still too high, therefore, he isn't able to participate in the PNOC022 trial. So for now, his next follow up at Starship is in mid August, unless he needs to go in earlier.

    We can explore importing the meds from Germany, but our oncologist won’t support this unless liver enzymes are normal. This is around $10k per month to import and also thought to be less effective than the trial drugs (which are two).

    If we go down the German route, then we won’t qualify for the third part of the trial which we may qualify for once there is progression (signs the tumour is growing). However, once we have progression, there may not be any slots left on the trial. So we may choose not not to get the drugs from German in favour of the thought to be more effective combo, only to find out we can’t be on it anywhere.

    So for now we carry on as is. No more scheduled visits to Starship but we will continue with private physio and plan some more adventures.

    Lachie is very pleased to not have any more bloods and the liver detoxify diet was loosened today as a reward… as you can see from the photo below he embraced it.

    Thank you again for your continued support!

    Nikki

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  • A bumpy ride, but finally a bit of good news

      2 June 2023
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    Hello everyone,

    We've been a bit quiet with updates while continuing on this journey with Lachie. It's been a rough ride for him, with a 9 day stay in hospital for respiratory issues, as well as losing all of his speech and mobility for a while. He's slowly been able to regain his speech again, with most of it able to be understood. He's also starting to be able to sit himself up again and much more controlled movement of his arms/hands, which is really good to see. He's even felt well enough to go in to school to see his friends and teachers while dropping Harry off for the day.

    Amazingly, his latest MRI has shown that the tumour has shrunk by 1cm on one side and .5cm on the other side - something we didn't expect due to the decline in his mobility etc! This means he qualifies to start the chemo trial next month, with the only thing standing in the way being his liver enzymes are too high. He's come off the steroids now and we are seeing a decline in those on his weekly bloodtests, so fingers crossed they come down enough!

    A spa is being set up at home for him to relax in to help with his muscle pains - water has always been his happy place.

    Thank you again for all the continued support!!

    Nikki

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    • 02/06/2023 by Gary

      I am so glad to see some improvement I hope you keep strong .

      There is always some hope. I have been through this journey myself & after radiation & cemo my tumour has reduced in size considerably

  • Update

      22 April 2023
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    Hello to all of Lachie's supporters! It's been a while since I've posted an update.

    It's been just over a month since radiation finished, and unfortunately it's been a bit of a rough ride for our boy. Lachie hadn't been feeling very well, was very tired and vomiting a lot. He had excess fluid in the brain as a side effect from the radiation, so had a shunt fitted to drain this away to relieve the pressure in his head. It has helped, but it's taken a couple of adjustments to it for it to be working as well as needed.

    Lachie's balance and mobility has declined, meaning he is now in a wheelchair and can't walk unassisted. He is also suffering from anxiety, which of course is understandable.

    The most recent MRI showed a change in the tumour, but the oncologists believe this to be pseudo progression, meaning still inflammation from the radiation. He's on a high dose of steroids to try and reduce the swelling and hopefully give him some balance and mobility back.

    On a positive note, he's been doing some pretty cool things when he's able to - feeding the lemurs at Willowbank Wildlife Reserve, as well as feeding Giraffes and patting rhinos at Orana Wildlife Park. He's had a private screening at Event Cinemas Albany for him and his friends to see the Mario movie, been on a jet boat ride at the Waimakariri River, and had a private flight over the city thanks to Steven Smith from Barfoot & Thompson, to name a few.

    We are still hopeful that the steroids will help him gain back some independence and enable him to do a few more things on his bucket list. If you haven't followed his bucket list page on facebook, the link is https://www.facebook.com/profile.php?id=100089298321738.

    Once again thank you so much for all your donations, they're enabling Liesje and Andy to spend time with Lachie to care for him, but also to make all of these memories possible for the family, for which we are deeply grateful.

    Nikki

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  • He did it!

      15 March 2023
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    Monday marked the last of Lachie's 30 radiotherapy sessions! The team at Auckland Hospital were amazing and patient with him to get him through his journey, which was challenging at times!

    Overall Lachie is doing pretty well, enjoying his time doing things he wants to do, and hopefully now that his treatment has finished, he'll be able to go to some different places and tick off some of the bucket list!

    For now we have to wait 4 weeks for another MRI to see what effect it has had on the tumour, which seems like an eternity. After that, there is the possibility of a chemo trial which would start in about 12 weeks, which Liesje & Andy are exploring.

    Once again thank you for all the love and support for our family, it's truly amazing to feel surrounded by such awesome people who are cheering for Lachie and our family during this journey.

    Nikki

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  • A rough couple of weeks

      6 March 2023
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    Hi everyone, thank you again for your continued love and support for our family!

    It's been a rough couple of weeks for Lachie, unfortunately the small doses of steroids didn't help him feel better, and his symptoms of hydrocephalus worsened, putting pressure on his brain.

    We tried a larger dose of steroids while he was hospitalized, but unfortunately, this didn't seem to help either. Last week he underwent surgery to have a shunt put into his brain, which drains the fluid build up back down into his stomach. The difference this has made has been huge, even just the next day he was a much happier kid!

    We have another 8 sessions of radiation to complete, then a 4 week wait for an MRI to see if it has shrunk the tumour down. Hopefully during this 4 week wait he still feels quite good and can get out and do some fun things.

    In the meantime we're enjoying as much time as we can as a family, with his Grandparents from Palmerston North coming to visit to spend some quality time with him.

    Nikki X

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    • 06/03/2023 by IRENE

      So sorry to hear Lachie's had a rough couple of weeks and has been feeling poorly, sending love to him and all of your family. We're all praying that the radiation will put paid to that darned tumour and that Lachie can make a miraculous recovery . xxxxxx

  • Half way!

      14 February 2023
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    Today marked half way through Lachie's radiation treatment, and most of the sessions he's handled like a champ! Fingers crossed the rest of the treatment goes smoothly - he isn't feeling too good at the moment, so we're trying a short does of steroids starting today to see if that makes him more comfortable.

    On Friday night we got to spend an awesome VIP evening at Eden Park in the World Cup Lounge for Ed Sheeran, including Limo & Hummer transfers there and back, all courtesy of Eden Park. It was great to tick that off Lachie's bucket list! The NZ Herald did an article yesterday to cover this - https://www.nzherald.co.nz/nz/ed-sheeran-red-carpet-concert-for-boy-with-incurable-brain-cancer/YL3SQGGUURHQBIJGEP3EOVCDN4/?fbclid=IwAR2-LTXGOOp6CoIuwWRR7-DSKCgmDI0_9VooCLBr--ibB-iVudVtS8Xz5Ak.

    I'll update more once we have more to tell - as always, thank you to each and every one of you for your support!

    Nikki x

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  • 1 week down!

      28 January 2023
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    Yesterday Lachie completed his first week of radiation therapy, and for the most part he was an absolute rockstar with the whole process! He had a bit of difficulty yesterday with it, but eventually did it with no problems. Fingers crossed the rest of the treatment goes smoothly and he doesn't suffer from side effects.

    The plan has changed from three weeks of radiation back to six weeks as originally planned, so 25 more sessions to go!

    This week he's enjoyed spending time with his cousins and friends, and also been to see the new Avatar movie with Andy.

    More adventures are planned for him, which will be documented on his facebook page that I posted in my previous update - please feel free to follow along there as well https://www.facebook.com/profile.php?id=100089298321738

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  • Lachie's Adventures

      19 January 2023
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    We are absolutely mind blown by the support for Lachie, Liesje, Andy & Harry, as well as the rest of the family. We never anticipated the level of love & support from people all over the world - friends, family & complete strangers. We can never express the gratitude we have for this, so a big thank you from the bottom of our hearts is all I can offer.

    This past week Lachie has been out and about enjoying time with family and friends before treatment starts next week.

    He's been horse riding at Muriwai, then off to Rotorua to go zip lining, luging and playing mini golf to name a few.

    We have created a facebook page to document all of his adventures, if you'd like to follow along there the link is https://www.facebook.com/profile.php?id=100089298321738.

    I will also continue to update this page as we continue on this journey.

    Much love from our family to you

    Nikki

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    • 19/01/2023 by Penelope Hayward

      I am so glad you are all out having fun - he looks as though he has grown two inches or more in the last couple of months. Sending loads of love and healing thoughts Pxx

  • Mask fitting day!

      12 January 2023
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    Once again, the support we've received for Lachie, Liesje, Andy & Harry, as well as our extended family has been incredible and overwhelming. The outpouring of love from friends/acquaintances & even complete strangers has been amazing. I'd love to go through and thank each and every one of you for your donations/shares/messages, but there are just too many to do this. So from the very bottom of our hearts, we offer our deepest gratitude for every single donation to Lachie's fund, whether it is big or small, we're extremely touched that you've donated to help Lachie live his best life for as long as possible.

    We've managed to secure Ed Sheeran tickets for him now, which he's very excited about! Thanks to everyone who sent messages offering their tickets!

    Lachie will embark on his radiation journey on the 23rd of January, and Liesje & Andy have opted for the 3 week course at a higher dose, which has the same effect but the side effects are thought to be shorter.

    We're hoping this will mean Lachie will be feeling pretty good by the end of February and able to go on some adventures here at home and overseas.

    Lachie had his mask fitting today, this is to keep his head in the right place during the radiation therapy.

    I will continue to post updates throughout his journey.

    Much love from us to you

    Nikki

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  • Next Steps

      7 January 2023

    First of all, on behalf of Liesje, Andy, Lachie & Harry, and our extended family, thank you. We're deeply grateful for all the love and support our family has been shown during the darkest of times, from all over the world. We appreciate all the messages of support and offers of help, and while you may not always get a reply, please know that Liesje & Andy are reading all of them.

    Liesje & Andy met with the oncologist and neurosurgeon yesterday, and go in on Wednesday for Lachie to have a mask fitting for his radiation therapy, which will start in a couple of weeks. He'll have six weeks of radiation as an outpatient, and rescan after a couple of weeks. The aim of radiation is to shrink the tumour down to give Lachie as much time as possible for him to enjoy life, however, the tumour will grow back and usually doesn't respond to a second round of radiation. The silver lining with this treatment is he gets to be at home doing what he enjoys, instead of being stuck in hospital.

    In terms of chemo, there is no real evidence of effectiveness for kids with DIPG, so it's always going to be a question of quality of life vs prolonging his life. There is a trial in Aussie that will be available here post radiotherapy which they will explore, plus look at any other trials elsewhere in the world.

    At the moment, Lachie isn't aware of what is going on, other than there's something going on that is affecting his vision, so he's still his normal full of life self. We hope to keep it that way as long as possible for obvious reasons.

    If you have any questions or ideas that may help, please feel free to contact me directly.

    I will continue to update this page as we navigate this nightmare.

    Nikki

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