Mandy kindly shares her son Peter’s story:
“Our son, Peter, was diagnosed with Neuroblastoma in January 2019.
Prior to his diagnosis he was a fit, healthy, energetic eight year old, but in the month running up to his diagnosis, he started to complain of back ache.
We thought we had a rational explanation for it. He had been under the care of a podiatrist for tip-toe walking and then he broke his big toe playing football which forced him to walk on his heels.
The back ache began just after his toe healed up and we rationalised that it was due to him walking differently for two weeks. But the back ache persisted.
On Christmas Eve 2018, he was upset and couldn’t get to sleep because his back hurt and he had tingles running up and down his leg. The day after Boxing Day, he couldn’t keep up on a family walk. We took him to the GP that afternoon. Her words: ‘We don’t like to see back ache in young children’.
She made a referral for blood tests but gave us the green light to continue with a holiday to see family in Edinburgh for New Year.
We didn’t make it back home for the blood tests.
Peter’s symptoms escalated to wobbly walking, losing his balance and struggling to go up and down stairs. On New Year’s Eve 2018 we took him to my mum’s GP who immediately referred us to A&E.
There, Peter was seen by a registrar and then a consultant and then he was having an MRI, all in the space of two hours. It was incredibly scary.
When the news came that he had a growth in his chest, and that a small part of it was pressing on his spinal cord, and that he was being admitted to hospital, we didn’t know what to think.
No one said cancer at that stage.
Three days after being admitted, the part of the tumour pressing on Peter’s spine caused a spinal cord injury, leaving him with no sensation or movement below his chest.
He had an emergency operation to remove the bit of the tumour causing the compression and the next week or so was filled with intense physio and frequent testing to see if he would recover from the injury.
Finally, twelve days after being admitted, we received the good news that Peter’s condition was stable enough for him to move to Manchester Children’s Hospital, closer to home, but the devastating news that the growth was cancer.
Peter was transferred to Ward 84 at Manchester Children’s by ambulance on a Saturday in the middle of January 2019.
I remember feeling completely disorientated for the first couple of days: a new hospital, a new ward, new nurses, physios, doctors, consultants.
But I also remember one of the nurses bringing us our Milly Bag and being overwhelmed by the kindness and thought and care that had been put into it. It was a perfect mix of help and comfort.
Peter spent six months in hospital, unable to go home between chemo treatments because he was still having intensive rehabilitation for his spinal cord injury.
His Milly’s rainbow blanket and elephant stayed on his bed the whole time.
His Neuroblastoma was localised in his chest so his treatment was shorter than it might have been. He had chemo, surgery, radiotherapy and maintenance treatment finishing altogether in February 2020, eight months after coming home from hospital.
Unfortunately, the story didn’t end there. Peter relapsed in August 2020 with a tumour on his skull bone and this time the cancer had spread to his bone marrow and pelvis.
He spent a year going in and out of Ward 84 Day case for treatment, sometimes returning to Ward 84/86 for inpatient stays.
Our Milly Bag was exactly what we needed for hospital stays and the rainbow blanket and elephant went every time too.
Three years later, we have just had the amazing news this summer that the disease still visible on Peter’s scans is no longer active and he is effectively in remission again.
He is still on treatment for another six months and regular scans will continue for the foreseeable. He hasn’t fully recovered from the spinal cord injury but he has learned how to adapt to it and is as active and energetic as a full-time manual wheelchair user as he ever was before injury.
We go forwards with hope, knowing that future Neuroblastoma relapse is possible but thankful to be back in a place right now where Peter is healthy and well.
And we will always be thankful for the day we were handed our Milly’s bag, because it’s not just a bag, it is smiles and treats and help and comfort and, more than anything, a caring heart just at the moment you need it.”
