Children’s Cancer Awareness Month

I want to tell you a story about my friend Katy and her little boy Ezekiel.

One day, when Ezekiel was just 2 years old, he developed a “bit of a lump” in his abdomen, it just showed up out nowhere. It was right sided, painless and quite firm.

Katy thought he was maybe constipated, though it was a bit high up for that.

To be sure, she went to the GP who sent them up to hospital…just to get checked out.

But Ezekiel was admitted that night and the doctor wrote in the notes that he didn’t want anyone pressing too hard or even examining the swelling…”just incase”, he said.

The next day Ezekiel had an ultrasound. “He was quite happy”, his mum, Katy, recalls “he thought it was an adventure in the hospital and was quite excited. In fact, that night I had to stop him from jumping on the hospital bed!”

His blood tests (including kidney function) were all normal. The doctor was surprised by that.

The next day the sonographer asked Ezekiel’s parents if they knew what they were looking for, when Katy said “no” the sonographer looked away. Katy says it was at that point that she knew something was wrong with her little boy.

A couple of hours later they were waiting in his room, Katy was very anxious. “I think I knew something was wrong but I didn’t want to admit it to myself. I remember asking Stephen (Ezekiel’s Dad) “What if it’s something serious?” and him saying “It won’t be.” To which I replied “But what if it is?” and his response is one that I’ll never forget. He said “Then we’ll face it together. As a family.”

Minutes later their doctor came into the room with another doctor, a nurses and a couple of other people.

That’s when Katy and Stephen were told every parent’s worst nightmare. Ezekiel‘s ultrasound has confirmed a diagnosis of Wilms Tumour. Ezekiel was just two.

They were told that treatment would involved chemotherapy, a radical nephrectomy (kidney removal) and then most likely more chemotherapy and possibly radiotherapy afterwards, depending on the staging of the tumour. This wouldn’t be determined until after his operation.

“They left us to talk shortly after that and to think about what they’d said. We then had to make some of the most difficult phonecalls of our lives and tell our families that our beautiful little boy had cancer.” Katy recalls.

Over the next few days Ezekiel was transferred to Sick Kids in Edinburgh, where he had an MRI, port insertion, a biopsy and was started on Enoxaparin which was used to thin his blood as part of the tumour had started to grow out of his kidney and up the Inferior Vena Cava (the main vein running from the kidney to the heart). They were there for 6 days, after which Ezekiel started chemotherapy.

After each of the first 3 doses of chemotherapy, Ezekiel was admitted to hospital with a fever. Each time there was no sign of infection and his doctors concluded it must be the tumour reacting to the attack from the chemo.

A few weeks after chemotherapy started Ezekiel underwent a big operation where they removed his kidney and slit the IVC open to remove the tongue of tumour that was making its way up the IVC. It was very close to little Ezekiel’s liver so a liver surgeon was brought in from The Royal as well as a paediatric kidney surgeon from Leeds.

Ezekiel then had 27 weeks of post-op chemotherapy which is given to make sure any remaining cancer cells are killed off and to reduce the risk of relapse too. He was admitted a few times with infections and anaemia, etc. His sickness became very difficult to control and he lost a lot of weight during this time. His core muscles were affected too so he became quite clumsy and with his blood thinning injections he would bleed a lot when he fell over! There was still a clot in his IVC after the operation so he stayed on the Enoxaparin after he finished chemo.

In December 2018 he was pronounced ‘in remission’ and has remained cancer-free for the past 9 months, since then. He has clinic visits once a month, ultrasounds once a month, chest xrays every 2 months and MRIs every 3 months. He’s had a few longer term side-effect from chemo but nothing terrible.

Ezekiel turned four last week and has started nursery. He has been in remisison for 9 months now and is slowly gaining weight and readjusting to life after isolation. He goes to birthday parties, rides his bike, likes to swim and is able to do everything now that other 4 year old likes to do.

September is children’s cancer awareness month. Please share Ezekiel’s story. Not just for me, but for his loving parents Katy and Stephen and for ever other child with cancer and their families.

CHILDREN’S CANCER FACTS….from Ezekiel’s mum…

Here are some statistics around childhood cancer and what they mean.

FACT:4 out of 5 children who are diagnosed with cancer will survive.

REALITY: These statistics only take into account children who survive past 5 years. If a child relapses and dies, they’re still considered a survivor. The real statistics are much lower but “4 out of 5” sounds better. Also, most cancer-related deaths in children are not classed as cancer-deaths because the death certificate usually reads along the lines of whatever ended their life. For example, if Ezekiel died from a respiratory virus during treatment (which he almost did) the cause of death of his birth certificate would read “Corona virus” rather than “Corona virus caused my lowered immune system due to chemotherapy treatment for cancer” so the official stats don’t take that into consideration either.

FACT: big charities like Cancer Research UK only give about 1% of funding to paediatric cancers. That’s 1% for ALL children’s cancers.

FACT: Most of the chemotherapy drugs used I the UK were developed in the 60s, 70s and 80s for adults (the ones used for Ezekiel were developed in 1963 and 1964) The children get a watered down version of these drugs because it works but they also come with the usual harsh side-effects and can actually cause cancer, later on in life.

FACT: more than 95% of children who have had chemo/radiation in their early years will develop a serious health condition by the time they’re 45 as a result of their treatment.

FACT: 30-45% of parents who’s child has been treated for cancer will develop symptoms of PTSD.

FACT: Only 4 medications have EVER been developed and FDA approved for use on children

FACT: Childhood cancer caused more deaths than any other disease. Its not rare.

“Cancer isn’t easy for a lot of people to talk about. But childhood cancer is even more difficult to comprehend, it’s difficult to consider and its difficult to talk about. So people just don’t. They avoid the subject, they avoid the parents, and they avoid the reality of what could happen to their child. Friends become strangers and strangers become friends.” – Katy

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I’m so glad I met Katy…she is a stranger that became a friend and she has a special place in my heart.xx

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