Friday 4th February was World Cancer Day. Ironically, this was the day our world changed literally overnight as we found out that our child has cancer. More specifically, our little boy has B-Cell Acute Lymphoblastic Leukaemia (ALL). This is rare, less than 500 children per year are diagnosed with it however if you are going to get leukaemia, this is the one you want.
The last few weeks have been an absolute whirlwind because ALL develops in a matter of weeks so they get on with treatment as fast as possible. Our little Dinosaur has gone through so much since he was diagnosed (7 blood transfusions, 3 operations, countless blood tests, an ECG, chest x-rays and he’s well into chemo) but this is very much the beginning, we’ve got a long road ahead of us before he gets the all-clear.
How It Started
On New Years’ Eve, the Dinosaur had a positive PCR test and developed symptoms of covid later that day. After he had completed his isolation and had gotten rid of covid he never seemed to get better. We were convinced he had long covid. For the following few weeks, he was displaying these symptoms:
- Pale in colour
- Feeling the cold more
- Lips turning blue when chilly
- Loss of appetite
- Lack of interest in normal activities
- Bruises for no reason
- Knee pain and refusal to walk
- Lack of comprehension at times
- Unusually bad temper
- Falling asleep easily in strange places like the preschool garden
- Generally not himself
As we were worried he apparently wasn’t recovering from covid, I took him to the GP a couple of times, spoke with NHS 111 a couple of times and had a trip to our local Urgent Care Centre.
On Wednesday 2nd February 2022 he was sent home from nursery with a temperature and he was even more out of sorts. On Thursday 3rd February 2022 he was feeling really tired and hot. On Friday 4th February 2022 he refused to get up because he was too tired, he also had a high temperature. I kept checking on him throughout the day and waking him up and making him talk to me. At lunchtime, I noticed he had what appeared a red meningitis type rash on his thigh that didn’t fade when I did the glass test. I took him straight to our local A&E.
In A&E, he was treated with salbutamol and sent up to the paediatric assessment unit. In PAU I explained all the symptoms to the doctor who was assessing him. He then went a got another doctor. Again I explained every single symptom he had been displaying over the last few weeks. The senior doctor was concerned about these symptoms and performed a thorough physical exam, sent Dinosaur for an x-ray and ordered extensive blood tests.
Dinosaur and I were then moved to a bay while we waited for the results to come back. At about 9:30 pm a doctor and 2 nurses came to talk to me. As soon as I saw them and the looks on their faces, I knew something was terribly wrong. This was the moment the doctor told me that all the signs were pointing to leukaemia and that as soon as I was ready, we were being moved to the children’s oncology ward.
My heart skipped a beat. I immediately felt sick. I burst into tears. The very first thought that went through my head was “F**K YOU BORIS! I’m sitting here ALONE being told my child has cancer while you are denying that your cheese and wine parties were wrong!” The second thought that went through my head and then came out of my mouth was “But he’s only 4!” The nurses were absolutely fabulous, they got me a drink and a sick bowl just in case. They asked if I wanted them to call someone. Then it dawned on me that I was the only one who knew. I or a nurse would have to phone Daddy Dino and break the news to him. I felt sick again. How on earth do you tell your spouse that your child has cancer?!? I knew I had to tell him myself, in my mind, it would be far worse coming from a stranger.
I managed to calm myself a little and gathered together our things. We were then led out of the PAU and round to the children’s oncology ward and shown to a room. The Dinosaur was busy playing with his tablet so I took the opportunity to hide in the ensuite and phone Daddy Dino to break the news to him that our child has cancer. As it was a Friday night, he was at home with the Unicorn so I told him to help her pack a bag so she could go for a sleepover at Nanny & Grandad’s house. Next, I called my Mum and asked her to go to my house, pick up the Unicorn and Daddy Dino, take the Unicorn to her house for a sleepover and then drive Daddy Dino the 45-minute journey to the hospital.
While I had been doing this the doctors had been busy. They immediately got in touch with Bristol Children’s Hospital as this is the closest children’s cancer centre to us and both hospitals have been brilliant. Over that weekend we stayed at our local hospital and they followed an initial treatment plan from Bristol. The Dinosaur received a red blood cell transfusion and a platelet transfusion, IV antibiotics and fluids. On Sunday 6th February 2022 he was transferred to Bristol Children’s Hospital so that he could be formally diagnosed and start treatment.
The Journey Really Begins
On Monday 7th February 2022 the Dinosaur had a small operation to get a bone marrow sample so that it could be tested to confirm exactly which type of leukaemia he has so they knew which drug cocktail to start him on.
On Tuesday 8th February 2022 it was confirmed that he has B-Cell Acute Lymphoblastic Leukaemia (ALL). If you’re going to get leukaemia then this is the one you want as it’s the most common. This made it official. Our child has cancer.
Our child has cancer… what a bombshell.
On Wednesday 9th February 2022 the Dinosaur had another operation to carry out a lumbar puncture, have a Cathaport fitted (this is a central line which means he won’t need to keep having cannulas and will have more freedom of movement), another bone marrow aspiration and intrathecal chemotherapy (medicine injected into the spinal fluid).
Supporting The Family
Needless to say, receiving a diagnosis of cancer is pretty shocking and necessitates drastic changes to the family dynamic literally overnight. If your relative/friend/colleague’s child has been diagnosed with cancer, there are a number of ways you can help to support the whole family from the initial few days and beyond:
- Know what to say and what not to say (read more here)
- Provide practical support such as prepare some meals, offer lifts or take care of pets
- Send a gift – for the child, for siblings, for the parents
- Be there to listen
- Be a shoulder to cry on
Looking To The Future
All the consultants are extremely positive and are all talking about when he’s a teenager and an adult and how long he’ll need to have checkups to make sure it doesn’t come back so we’re feeling really positive.
He spent the first 2 weeks in Bristol to start the intensive phase of the chemotherapy and then he was allowed home to continue treatment as an outpatient.
His treatment will be quite intense for the first 6 months or so but the majority of it will be done as day trips to the hospital. After that, he’ll continue receiving treatment for approximately another 18 months or so and then he should be fit and well again. He will continue to have routine checkups well into adulthood.