Calum, Our Rae of Sunshine

28/06/2025

☀️ A little Calum update ☀️

Hello, it’s been a while since we posted and we thought we would let everyone know how Calum is doing. He is doing great and is full of energy and carry on- not much change there. 😂 His appetite is back and he is no longer on his feeds, he just has his ng tube for us to top him up with water. Calum has just finished p1 and had an amazing year being at school as much as possible.🥰

Calum finished all 12 cycles of BIT chemo in April and coped so well throughout all cycles with luckily minimal side effects. The tumour has responded amazingly and is dead and barely visible on scans, almost like a scar now.🥰🥰 Calum still has the same 2 stubborn bone spots, they show up less on scans which is positive. Calum’s consultant was really pleased with Calum’s response, for relapse it has been a really good response.🧡

Calum’s consultant had brought forward the idea of Calum taking part in a CAR-T clinical trial at great ormond street, to try tackle these bone spots and any lingering cells. After going through eligibility, consents , health checks, we are so happy to say that Calum will be going forward with the clinical trial. 🥰 We have already been to London and are going back this week for more tests and scans then hopefully begin the treatment next week. We will be in London for around 3/4 weeks. There have been many promising CAR-T trials for children with relapsed neuroblastoma.🧡

Calum has had immune system cells removed and they have been engineered in a lab to recognise and kill neuroblastoma cells. Calum will have 5 days of chemo to make space in his bloods for the cells and then the engineered cells will be given back to him. It is expected he will become quite unwell and will be tough on his body. It’s hard knowing we are putting him through more treatment but we hope that this will work for him. 🧡

We hope with everything we have that Calum can tolerate the cells, and that they will get busy working to rid Calum of these spots. This boy is made of some tough stuff, we keep fighting on. 🥰🧡

21/03/2025

🥳🥳🥳Happy 6th Birthday 🥳🥳🥳

Our boy is 6 today and we have celebrated with our families, celebrating Calum and the latest scan results which have been positive , yes!! Calum spent his birthday at hospital but we made up for it with a little family party once we were home🥰🧡🧡

Calum’s tumour still has no migb uptake - which hopefully means it could be dead. His bone spots remain but are lighting up less again so they are responding. Receiving positive results just keeps us pushing on, what an amazing little man you are, Calum! 🧡🧡🥳

Calum is showing us everyday how resilient, brave, kind and caring he is. We celebrate you today and your wonderful courage having to still fight 2 years on. All we can try to do is cling on to hope that one day you can enjoy life like you should be able to. But for now, you are doing an awesome job getting through this and are doing it living your life full of fun and a little bit of craziness. 🥰🧡🥰

15/02/2025

🎗️On international childhood cancer day, we think of all our brave little friends battling this cruel disease of cancer, going though things no child should have to endure and our little friends who have sadly lost their battle. 🎗️

Today is International Childhood Cancer Day.🎗️

Cancer doesn’t care who it hurts including babies, children and young people of all ages.

Today we want to send all our love and strength to everyone affected by Childhood Cancer, and pay tribute to our inspirational awesome medical staff who do everything they can and more to cure our children, and if that’s not possible make their ending as gentle and dignified as possible.💛

Today we celebrate our superheroes and we send our love to you all and remember Team Jak are here always for anyone facing this journey.💙💜💛

31/01/2025

Please, please if you can sign this petition and share. 🧡🧡🧡
Andy had to go back to work 6 weeks after Calums diagnosis due to financial pressures. There is no financial support for families of seriously ill children for at least 12 weeks and even after this, there are huge delays in processing child disability allowance. It’s Never You are doing amazing work trying to campaign for parents of seriously ill children to receive financial support from day 1. In the most horrific time imaginable it’s just awful that financial pressures put more stress onto parents who are fighting just to get through each day for their child. 🧡🧡🧡

📢 This is it! The BIG petition! 📢 We need as many signatures as possible to make a real impact. This is our chance to demand change, to stand up for parents of seriously ill children, and to push for the support they desperately need.

🚨 Sign it. Share it. Spread the word. 🚨

Every signature counts. Every share helps. Let’s make this happen.

https://petition.parliament.uk/petitions/700285

01/01/2025

✨ Happy New Year ✨

We are going into 2025 with some more positive news. Calum’s latest scan results have shown the tumour has shrunk again to 5mm, his consultant thinks it may now be dead. The 2 bone spots are lighting up less on the migb scan so we hope this is a positive sign of them starting to respond to the chemo. We are so relieved Calum’s body is coping with the chemo and the cancer is responding. He’s doing amazing.🥰🧡

Calum is generally well, apart from some side effects during the chemo cycle. He is full of energy, fun and just as crazy as ever. 🥰 We had a lovely Xmas at home and Calum even got to join in at his nativity at school, which was emotional to say the least!🥰🧡

The plan is to continue this treatment as it is working, he will have more scans after another 3 rounds. We’re hoping with all our might that it’s more positive news.🧡

Thank you as always, for the kind and warm wishes for Calum. 🧡🧡🧡

29/11/2024

🧡☀️🧡 A little update on Calum 🧡☀️🧡

Calum has been mostly well with some side effects from his chemo cycles. His previous scans showed further shrinkage of his tumour but the bone spots remained unchanged. He has another chemo round next week and then we will have scans the following week, his team will then evaluate what to do next. We are beyond relieved he is responding to the chemo so far. 🧡

We unfortunately had an inpatient stay from Sunday to Thursday as Calum had a nasty viral infection. He wouldn’t walk and we were petrified but he is back to his crazy self. We went from worrying of another relapse, to viral, to various checks for any autoimmune diseases to possible lime disease. Safe to say it’s been an awful few days of worrying but luckily it is looking like it was viral. 🧡

Calum has been amazing as always and taking everything in his stride. He never complains of having to go to hospital and continues to cause havoc while he is there. All the team there are amazing and join in on his pranks and his fun. We are so lucky he has built such a special bond with everyone there. 🧡

We made some amazing memories on our first family hol since diagnosis to centerparcs. Calum was sick his ng the second day so he had a few days of seeing his wee face without his tube. We were so kindly funded a dry suit by Logan’s fund which allowed Calum to swim in water for the first time in nearly 2 years🥹 It was truly magical to see his face so happy to be swimming again and we will hold those memories close to our hearts always. 🧡

We pray and hope we will have some more positive results from the next scans. As always, your kind words and wishes really do give us a boost. Thank you so much 🧡☀️🧡

15/10/2024

Another beautiful boy fighting neuroblastoma. We have became friends with Nicole and David and have watched brave Tommy go through the horrible treatments that Calum has been through. They are beginning to fundraise for maintenance options like we have🧡🧡
https://www.facebook.com/profile.php?id=61566855342901

Cheeky, car loving three year old, fighting stage 4 high risk Neuroblastoma 💛

📍https://gofund.me/f7f7434c

06/09/2024

🧡☀️🧡 Hi everyone 🧡☀️🧡

We would like to share the positive news from Calum’s latest scan results. His tumour has shrunk significantly and is no longer lighting up on the migb scan. His two spots on his bones are unchanged, but we knew with relapse that disease can be stubborn.

This is a positive response and we are relieved his body is responding and tolerating the treatment so far. He is doing really well with some side effects but is mostly his happy self, even starting school
and having fun with his friends.🥰

Calum is currently on his rest period before he starts his 4th cycle of chemo. He is taking it all in his stride as always, being super brave and full of carry on.

Thank you so much for all your kind thoughts and words as always. It really does help to keep us going.🧡

03/09/2024

🎗️September is Childhood Cancer Awareness Month. 🎗️

It is a grim reality that childhood cancer is regarded as rare so therefore receives a pitiful amount of funding to enable research. To increase cure rates, less life long side effects, to increase survival, childhood cancer needs more funding.

Solving Kids' Cancer manifesto is set out to try speed up research and call on the government to take actions to help.

03/08/2024

We often look back on our pictures and videos from this day and remember the day so well of how welcoming and caring everyone was.
How amazing to create this partnership with Ayrshire Cancer Support This is so special and will give families memories they can always cherish. 🧡☀️🧡

'𝗨𝗻𝗳𝗼𝗿𝗴𝗲𝘁𝘁𝗮𝗯𝗹𝗲 𝗲𝘅𝗽𝗲𝗿𝗶𝗲𝗻𝗰𝗲' 𝗳𝗼𝗿 𝘆𝗼𝘂𝗻𝗴 𝗰𝗮𝗻𝗰𝗲𝗿 𝘄𝗮𝗿𝗿𝗶𝗼𝗿𝘀 𝗮𝘁 𝗥𝘂𝗴𝗯𝘆 𝗣𝗮𝗿𝗸.

This season, The Killie Community will provide special mascot places for local young people affected by cancer. 💛

Read more - https://kilmarnockfc.co.uk/news/mascots-partnership-ayrshire-cancer-support 📰

"The young people that access our support services are often experiencing the most challenging circumstances, and for them to be able to come along on the day and have fun will be hugely welcome. Thank you Free Kicks Foundation and The Killie Community" - Craig Blackwood, Director of Care Services Ayrshire Cancer Support.

In our experience, mascot packages give children a chance to put any challenges they have been through to the back of their mind for a special day.” - Steve Thorpe, Free Kicks Foundation.

Ayrshire Cancer Support currently have 10 Mascot experiences up for grabs, on a first come, first services basis so to be in with a chance please contact Ayrshire Cancer Support on 01563 538008 or email cyp@ayrshirecs.org as soon as possible and the team will be in touch.

21/07/2024

🧡☀️ Hi everyone ☀️🧡

We would like to let everyone know that Calum’s end of treatment scans have shown a relapse, the cancer is back.

Everything was set for NYC, Calum has been NED since surgery and he has been well, we were completely shocked. Although we were always anxious for those results, we had hoped they would never come. We are utterly distraught but trying our best to be brave for our strong boy.

Relapses in neuroblastoma are stubborn and often resistant to treatment, often referred to as treatable rather than curable. Calum has finished one cycle of chemo and will have another before having scans to see the response. The plan is for 6 cycles if Calum can tolerate them and depending on response, then we reassess for what’s next.

There are clinical trials throughout the UK, Europe and America for treatments for relapse that calum may potentially be eligible for. We hope to use the funds raised to access these trials if he is eligible.

We thought we had beat this but is it truly a cruel and ruthless disease. Please keep Calum in your thoughts and hearts that he has the strength to fight again.

Thank you as always for the support and kind words, it truly helps.

19/06/2024

A day we are so incredibly grateful to have had , happy nursery graduation day, Calum🥳

Calum is nearing the end of his UK treatment and has just finished his last cycle of dinutuximab. He has 2 weeks of ret acid before having his final scans and tests.

It’s a whirlwind of emotions being at this point in his journey, especially thinking back to Calum’s diagnosis and not knowing what was to come. Calum has been so strong throughout and is a happy, energetic boy who loves to play with his buddies.🥰

With the help of Solving Kids Cancer, we are in touch with MSK and trying to finalise everything we need to hopefully get out to NY as soon as possible in the summer.

This wouldn’t have been possible without the hard work of so many, the kind words shared and the love and support we have felt throughout. We wish we had the words to truly express how grateful we are. Thank you 🧡☀️🧡