We had never heard of Hodgkin’s lymphoma.
So when it was said in the same breath as our oldest son’s name, we didn’t know what to say. We knew it was serious, but our minds were racing.
Just two weeks earlier, we had been sent away from the emergency room without medication.
Now, after getting a second opinion, we were told the worst news for any parent. Our boy had cancer.
We were heartbroken and scared. Not only because we knew that we now had a big battle ahead of us, but also because Levi is autistic and this would be a new challenge for all of us.
For the first 18 For months, Levi seemed like a typical little boy. Then he started acting differently from other children.
While his classmates began to recognize words and even string sentences together, Levi seemed to be moving in the opposite direction.
It was as if the words he had learned systematically disappeared from his brain until eventually he was virtually non-verbal again.
The nursery staff also thought there might be something wrong with his hearing because he was reacting to things, but we knew his hearing was fine – he turned quickly when he heard music he liked or when he heard something going on. a packet of chips was ready. Open!
At the time we suspected he was on the autism spectrum and needed learning support.
Getting a diagnosis was a gradual process, but it allowed us to adapt to what Levi needed to make life as easy as possible for all of us. We received help from speech therapists and he went to a special school from the age of three.
Over the years we all adapted as Levi grew. He remained non-verbal, but we had to try to find ways to communicate with him – that challenge still exists.
At first we realized that we had to ask him questions several times and change the types of questions – and we started using sign language and applied behavior analysis (ABA).
If you don’t communicate well with him, he will say he is fine, but if you can read his facial expressions well, he will tell you more. It could be a twitch or a look, and you have to examine that every time to know what he means.
He was always a big boy, and this made it harder to care for him as he got older, especially since he could hurt himself or others.
Then, just before he turned 17, he pointed to his groin and hip and told us there was pain.
Levi has a high pain threshold, so this was extremely concerning. We had also noticed that he was losing weight.
He loved being outside and exploring, so we weren’t concerned at first, especially since he was still eating. But no matter how much he ate, the weight continued to drop at an unhealthy rate.
We made arrangements with his doctor, a pediatrician and then a physiotherapist who recommended an osteopath.
Our instincts told us something was wrong and the osteopath arranged for a private MRI scan to rule out our concerns that it could be something serious.
However, the scan showed that the blood in Levi’s bone marrow did not look good. When the results came in, he had to go straight to the hospital for further examination.
His blood count was low in the emergency room, but he was discharged without medication.
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He was transferred to UCLH where he was diagnosed with Hodgkin’s lymphoma.
It was hard to tell Levi because he just wanted to go back to school and we had to tell him in a way he would understand.
We would say, “Levi is very sick” – and we could see the wheels turning in his head. We needed repetition and reassurance for him and he would understand. And then we had to remind him again, because he just wanted to leave.
Levi’s treatment began immediately, although it was far from easy.
He was taken to UCLH because they could treat him as a young adult with special needs, but one of us always made sure he stayed with him in hospital; The lack of routine and uncertainty in particular caused him difficulty.
The procedures themselves are not exactly autism-friendly. We were constantly explaining new things to him and helping him get through the next day. For example, he had to sit still for 45 minutes or an hour for scans. If he moved, it would take about twenty minutes.
We would say, “Levi is very sick” – and we could see the wheels turning in his head.
The steroids he was taking sometimes made him more aggressive, and he also pulled out his PICC line twice.
We tried to reassure him as best we could and tell him what happened next, but cancer is an unpredictable disease and the timing of his treatment can change at short notice.
We did our best to get him to tell us how he felt, ask if he was in pain, or differentiate between symptoms, but we also had to pay close attention to side effects. Sometimes we even lay with him to see if he was shaking.
But the support we received was incredible.
We are confident that it was only thanks to the tremendous team at the hospital, the family and the staff at Levi’s School that we got through it.
Levi’s brother Shomi was also great. Even though he was studying for his GCSE exams, he always supported his brother. He has since admitted that he kept to himself during Levi’s treatment because he didn’t want to worry us or cause any additional problems.
And despite all the grueling treatments and difficult times, Levi remained so positive the entire time.
Sure he had bad days, but on the days he asked for a hug or his favorite chicken and fries, we knew he was happy. On those days he smiled.
And when Levi laughs, it’s contagious.
When Levi finished his treatment – something he was fully aware of thanks to a tracker that counted the days – he went back to school a few weeks later.
And earlier this year, Levi was told he was in remission, which was a huge relief. We are so grateful that we made it through all of this.
He now has a check-up every three months, but that doesn’t stop him. He is now enjoying his walks again and knows he feels better because he still has energy.
But while some of the challenges he faced during his treatment are unique, some of the things we faced will be familiar to other families living with cancer.
It’s not always easy for children and teens to express their feelings, especially for people with autism. That is why it is so important that doctors and nurses ask the right questions in the right way.
They should take the time to get to know their patients‘ Snitches, like Levi with his looks, and ask how they are doing to get the real answers.
Every person affected by cancer needs to be listened to, no matter how difficult it is for them to communicate.
Our experience has taught us that when we are worried, we should always accelerate. We will always insist on checks and care for our son and others like him – this is crucial to saving lives.
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Source: Metro
Source: Metro
I am a highly experienced and well-connected journalist, with a focus on healthcare news. I have worked for several major news outlets, and currently work as an author at 24 news recorder. My work has been featured in many prestigious publications, and I have a wide network of contacts in the healthcare industry. I am highly passionate about my work, and strive to provide accurate and timely information to my readers.
