When Jak, my energetic 15-year-old son, first went to hospital struggling with chest pains, I was worried - but I never thought I was going to lose him. It was only when doctors started talking about taking bone marrow that I began to understand that our family would not be leaving the hospital unscathed.
It was cancer. At first they thought it was treatable, then they told me it was a rare, aggressive form that had little chance of a positive outcome. I was utterly devastated.
Through it all, Jak was a true inspiration. He just kept looking ahead and carried himself with such dignity and compassion. I was blown away by him in those moments, and I still am.
Everything was so hard to take in. All my energy was taken up trying to process my emotions and cope day-to-day. The last thing I would've expected to worry me was the financial impact of Jak's diagnosis. All I cared about was being there for my boy.
I had been working as a teacher and had recently moved to part-time while I set up my own business. Following the diagnosis, everything stopped and I focused on being there to care for Jak. I was getting some paid time off, but that didn't last long and was based on my reduced contract. So my outgoings very quickly overtook the money coming in.
The financial repercussions of a young cancer diagnosis are huge, but it's a tidal wave you don't see coming. You just aren't looking in that direction and you don't realise until it hits you.
We were eventually given the news that, despite the aggressive chemotherapy, Jak's cancer was not going to be cured. I was sitting with the consultant and I asked 'are we talking about months?' and she just looked at me in a certain way. I said 'weeks?' and she gave me that same look. At that moment I realised quite how quickly this was going to happen. I just wanted to get Jak home. He stayed with us for 10 more days before he passed away.
It's hard to describe the grief of losing a child. It's not something you can ever be prepared for. One thing I really wasn't ready for was returning to work. I couldn't imagine being there, working with children, while I was still trying to process my loss.
After Jak's death, I realised I would struggle to pay for his funeral. The costs are huge and I had no savings. Luckily, his football team raised money for us and I didn't have to face that. I just don't know what I would've done. Throughout all of this there was a part of me that just wanted to curl up and grieve, but I had to carry on.
I thought of my daughter and my role, as a single mother, of providing for her. If I didn't return to work, we would be in danger of missing mortgage payments and losing our home. I had to go back sooner than I was emotionally ready and it definitely took a heavy toll.
Throughout this experience, I was helped by CLIC Sargent, a charity that provides support for young cancer patients and their families. Their social worker helped me with the incredibly complicated benefits process and gave me a much-needed grant. Their research shows that during active treatment, parents spend an additional £600 per month on average as a result of their child's illness. Now they are petitioning the government to provide much-needed financial support right from the point of diagnosis.
I know there are other families like mine who are caught up in the whirlwind of childhood cancer. It turns a family's entire world upside down. From the moment he was diagnosed, Jak wanted to help people. Whether it was through his own blog, or just the people he spoke to about his experiences. We formed our own charity to continue his wishes, called Team Jak Hopefully he can inspire more people to take a longer look at the real costs of childhood cancer and see how we can get more support for those families forced into a reality so many people can't even imagine.
September is Child Cancer Awareness Month.
Guest posts
Guest post: "The financial repercussions of a young cancer diagnosis are huge"
KiranMumsnet · 26/09/2016 16:42
'Families of children with cancer get a lot of financial and extra support that families of children with other illnesses. That are just as critical just don't get. It's very unfair. My local hospital has a house for oncology children to stay in together with their families. Non oncology children can't use it. Drives me nuts.'
WTAF?! It blow my mind that a) people truly believe this b) are bitter about and jealous of these childrens' families.
Thank you, Allison, for sharing Jak with us.
On 25 November 2011, our then 8-year-old daughter was diagnosed with Acute Myeloid Leukaemia (AML). She needed immediate treatment and we were in patient from that night until 1 February of the next year, most of it in strict isolation.
My husband had to quit work immediately because we had a 5-year-old daughter and a 3-year-old son with autism at home and our daughter had to be treated at the nearest children's hospital which was 2 hours from our home. He was therefore ineligible for JSA. We had to wait 3 months to get DLA for our daughter (ironic because you can apply immediately if terminal, but she died less than 8 months later with no terminal diagnosis - she died of pneumonia following an allogenic stem cell transplant) and then claim gateway benefits.
We experienced financial disaster immediately and no, Toddler, we didn't get a golden ticket 
. My daughter had to be kept away from other children much of the time due to immuno-suppression. Many of these children are confined to hospital for months on end.
I had to live with her. It cost a fortune. She would take intense cravings and I would do anything to meet them because she was eating so very little as it was and losing weight. I had access to a microwave and kettle for me. So that's how I had to eat every single meal. I had to cart all our clothes to the launderette a mile away. And it was often. She soiled her clothes often due to the drugs she was on.
Then she died. You know that myth about how all children's funerals are free? It's just that, a myth. Her plot cost £1100. Her headstone cost £1900.
My husband had to go back to work 5 weeks later as debt had mounted and benefits stop in 8 weeks.
It took a huge toll on our already fragile mental health.
I am so very sorry for your loss, Allison. And thank you for bringing awareness to this issue.
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Yeah, you are, Toddler (an apt name). And you are using the guest post thread of a bereaved parent to do it. You continue to do so on this thread despite its being pointed out to you what poor taste that is in.
My child's protocol was intense, it had its own sort of stresses - she had 4 rounds of back to back chemo. Each round was all in-patient, 3 or more drugs through her Hickman line, 7-10 days. Strict iso for every single bit of it bar 6 days in the measly 7 months and 29 days she lived after the diagnosis. Because each one of those cycles was actually 4-6 weeks as we waited for her counts to rise again and then hit her with more. Then she had a 5th round of conditioning chemo for an allogenic stem cell transplant. And it killed her. Her blood was like pink water after she died.
Our stresses were different from even other children with cancer due to the nature of her disease and the nature of theirs.
But hey, continue to use the mother of a dead child's thread to keep banging on about your point.
I'm so sorry, Allison. It's a hard road we walk and again, thank you for sharing your son with us. My daughter's name is Aillidh. She was 9 when she died. 
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