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Willy’s journey with Neuroblastoma

  • Forever grateful

      14 June 2022
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    As this givealittle page is coming to an end very soon we would like to send a final message to say, from the bottom of our hearts, thank you.

    Thank you to everyone who has donated and supported us during this journey. Each of your messages have been read and received with so much love and gratitude it’s hard to put into words. Your donations have meant that we currently don’t have to worry as much about life’s financial stresses while looking after our precious boy. To know that there are so many caring, loving and generous people out there warms our hearts on the darkest of days.

    Willy arrived back in Nelson yesterday where he will stay for the next 9 days before flying back down to Christchurch for the big scan so see if his treatments are working. After this he will have his operation and radiotherapy.

    There’s still such a long way to go on our journey and we invite you to continue on this journey with us by following our facebook page – Willy’s Journey https://www.facebook.com/groups/526160722101710/ Any future fundraising that may take place will be posted on this fb group.

    Much love from

    Jake, Sarah and Baillie, and Willy.

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  • Update from Jake

      26 May 2022
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    Hi everyone, Jake here. Sorry it’s taken so long to do an update. I’m not very good at these types of things but I’ll give it a go. I can’t even begin to say how thankful I am for all the donations and kind messages. It means so much to me and allows me to keep spending every second week in Christchurch with Willy without having to stress to much about all things money related. I couldn’t do this without all the support, thank you.

    So much has happened since our last update. After Willy’s third round of chemo he was allowed to come back to Nelson for a few weeks. It was so good to have him back up here. He got to hang out with some friends and my mum and dad and have a bit of normal time. We did so much outdoors playing, zooming around the garden on his Yamaha and his electric bike and playing with trucks. He even gave me a haircut to match his. So much better than being in a hospital.

    He went back down to Christchurch and was straight back into his fourth round of chemo which he smashed. He’s still not getting nauseous and is still his happy Willy dog self.

    I met with the doctors this week and discussed what was next on the treatment plan. It’s a lot so hopefully I’ve got it all right. Willy will start his fifth round of chemo soon. In mid June he will have an MRI to look at the lump and see if his treatment has worked so far. Fingers crossed we see some positive results. After this Willy will have an operation to remove the lump. It will be quite a big surgery for the poor little guy and he will need about a month to recover from it. He will then have another PET scan and a bone marrow check then possibly have a sixth round of chemo. After this he will receive stem cell treatment then another two rounds of intensive chemo before starting radiation therapy. The radiation therapy will be every day for a month followed by a further 6 months of antibody treatment.

    He has his ups and downs but most days he is still smiling, joking, and wanting to get outdoors and do things. He is smashing his treatment and I’m so proud of him.

    I’ve added a few photos to the page from recently and also our time in Nelson.

    Thanks again for all the support and donations that everyone has made, some of you we haven’t even met but it honestly means so much to Willy and me that you can help us through his journey.

    Jake

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  • An update on Willy

      12 March 2022
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    Thank you to each and every one of you who has donated to this page. Every dollar that is raised means that there is one less thing for Sarah and Jake to worry about while navigating this new world of being away from home, loved ones, and work. While every message may not receive an individual response, they are all being read and are all hugely appreciated. Seeing the kindness and generosity from you all means the absolute world to Sarah and Jake.

    Over the last few weeks Willy has certainly experienced more than any child should in their lifetime. He has had a Hickman Line inserted into his neck which is a long term IV allowing easier application of medicine and an easier way to take blood. He has had 3 blood transfusions, a bone marrow aspiration, a kidney and heart test and had a PET scan which ascertains how far the cancer has spread. The results of the PET scan indicated that the cancer has spread to the majority of Willys bones including his skull, sternum, hips, left humerus, forearms, lower legs and T3 bone in his neck.

    He has completed his first round of chemo which he did over 5 days. He did so well and in cheeky Willy style he even told Sarah that he thought it was quite spicy.

    He has had a feeding tube put in to help him maintain a healthy weight and make it easier to give him oral medications and antibiotics when needed.

    It has also been ascertained that Willys tumour is approximately 103x69mm. Here’s hoping the chemo works its magic on this. The next step in this treatment will be harvesting stem cells.

    Throughout all if this Sarah and Jake have had to navigate the Covid world we are currently living in which has taken an unimaginable situation and made it 10 x harder. Not only are they all having to be tested regularly there is now a covid case on their ward and they are only allowing one person to be with Willy at a time and not allowing any visitors or support people to be with them. I can only imagine the strength it takes for Sarah and Jake to get through every day.

    Even though times have been really tough there have been a few moments of joy for Willy, mini golf with Sarah and Sam, nerf gun shooting practice with Jake, lolly cake, building LEGO and shooting the nurses with the thermometer cap. Keep it up Willy we love to see that big smile!

    Please keep the kindness, love and support coming for them all.

    Steph

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