Posted on Monday 10 September 2018
Phoebe’s story – Diagnosed with neuroblastoma under a year old
Phoebe was diagnosed with neuroblastoma when she was under a year old. Since being diagnosed in January 2016 she hasn’t really been off treatment, and the family have had to go to different hospitals to try different treatments. Travel has been one of the biggest costs for the family, as mum Naomi explains.
We found that car parking became a big thing for us – we could get a prepaid card to reduce the cost to £6 a day to park, but it’s still an additional expense. We’d have one of those cards on the go all the time.
We travelled up to Sheffield for a stem cell harvest. My husband had to book a hotel room because we couldn’t get him in to hospital accommodation. That cost us a couple of hundred pounds plus the fuel.
In February 2017 we were transferred to Birmingham hospital to go on a clinical trial. We travelled every three weeks for five days – going back and forward every day. There’s no parking at the children’s hospital so you have to park in an NCP car park. They do offer you a reduced rate but it still cost between £6.50 and £12 a day.
We had 12 cycles of chemotherapy before surgery and would estimate that it cost us around £1,000 in fuel and parking expenses. We have been lucky to be able to keep our jobs on reduced hours which has obviously helped. Our back up was the credit card. Through CLIC Sargent we were able to get three grants: one from Macmillan and two from local charities. That probably covered around £650 – £700 of the additional costs for parking and fuel.
Phoebe's mum Naomi
Before Phoebe’s diagnosis we were financially okay but things change when your child has cancer.
Support from CLIC Sargent
Our CLIC Sargent social workers, Anne and Kate, have helped us to maintain some sort of financial normality at least. We have to be more careful than before – the financial freedom we were fortunate to have is no longer there.
Our savings that were for future things like university for the girls or moving house are no longer safe and we aren’t able to save at the moment.
I sometimes feel bad to accept charity as I think there are others in worse situations but without the help we have had we would have struggled a lot more. Hopefully when this is all finally over we can pick it back up and get back to doing things as a family.
It’s the not knowing, you daren’t do anything because you don’t know if you’re going to end up as an inpatient again. We cut back on little things now. We’ve cut back on clubs and things like that. Amélie, our other daughter, did gymnastics before and was going to start dance classes but we’ve stopped these. There are other things that she doesn’t get the chance to do unless it’s free.
Phoebe’s recent scans show that she’s responding and we are giving treatment at home. She’s currently tube fed so she can take it down her tube every day. It’s great that she’s responding but we will then have to move on to more treatment. We’re not sure what yet, it could be the immunotherapy drug that has been approved by NICE recently or radiotherapy.
We never anticipated how long this would go on for, it will be three years in January 2019. Realistically we don’t know how much longer it could be. With neuroblastoma, once you suffer a relapse your world changes. It sounds ridiculous to say but you can almost become comfortable with a diagnosis because you know the treatment plan you’re on and what you’re supposed to be doing. But then relapse pulls the rug out from under your feet again and any security you’ve built up crumbles. It completely took our breath away.
We live scan to scan now, there’s no real protocol for Phoebe’s treatment. At the moment she has very few side effects and is generally doing well. She’s growing and her mobility is starting to improve. If she didn’t have her tube in for feeding sometimes you wouldn’t even think she’s unwell.
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CLIC Sargent is the UK’s leading cancer charity for children and young people, and their families.
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