Exploring the Shock Waves that are Created when a Child is Diagnosed with Cancer.

When Felix was diagnosed with Cancer in January 2016 it sent shock waves throughout our family, friends and community.

These are the voices that I want to be heard.  How did our closest friends feel, what did they think, how did it affect them?  How did our parents cope seeing not only their grandchild suffering but their children suffering such emotional pain and distress?  What about Felix’s teacher, his classmates and the school community?  How were they able to explain his absence, reassure the children, make things OK?

Then there are the Aunties, Uncles and Cousins – how did they explain to their children that their cousin was so poorly?  How did the Postie feel delivering cards and parcels from well wishers?  Then there is his football manager, football team and friends.  I can’t imagine how they felt.  Beyond these people, there are our virtual friends.  Friends who have supported Felix from afar but we’ve never met.  How did the ordeal that Felix was going through affect them?

These are the stories I would love to share.  I already have a list of wonderful people who want to share their story and tell the world about how Childhood Cancer affects not just the child but the whole family and the wider community.  Having just read the first two blogs that I have been sent I find myself in tears – I now know how some of you guys feel after reading my blogs!

If you would like to share your story to the world and make our shout about Childhood Cancer as loud as we can, please do get in touch.  My email is mrskabrown@yahoo.co.uk.

Let’s do all we can to raise awareness about the shock waves of Childhood Cancer.

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8 thoughts on “Exploring the Shock Waves that are Created when a Child is Diagnosed with Cancer.

  1. Hello Mrs Brown

    My name is Rosie and I’m from a very small village in Wales.

    My 9yr old son Isaiah was diagnosed with cancer on the 14th of July this year but it was not until the 4th of August that they found the right type after being misdiagnosed with Hodgkin’s lymphoma. Isaiah has Epithelioid sarcoma in the neck, it is so rare in children that he is only the second child to have it in the neck in the whole world and the only one who’s alive with it.
    For over a year he complained of intense neck pain which was put down to a sport injury and muscle spasms even when he developed a knot a size of a ping pong ball it was put down as swelling due to the injury but we noticed the knot was growing to the point it was now the size of a golf ball but it wasn’t until a second knot developed that they sent him for a CT where cancer was found.

    I remember when the knot developed I knew it was much more serious than just a sports injury but I thought it could of been anything but cancer likee you see the adverts on Tv but it still seemed so far away like it’s something so rare something in a bad nightmare something they use as a charity campaign. I felt awful for the kids who did go through it and would donate money if I saw it online etc but never did I think it would happen to my little boy. Where I live cancer is thought to be a old people’s illness it’s really really unheard of here for children to have cancer and that’s why it took so long for him to be diagnosed because even the doctors struggled to believe it.

    “I’m sorry but the scans shows the knots are cancerous tumors” “your son has cancer” Were the words the doctors said. We were brought into this grey cramped clinical room and two doctors with grave expressions on their faces explained everything using big medical terms most of them went over my head as it felt like I had just left my body like I could see myself sat in the chair with my son on my lap and my husband sitting next to us, I could see our stony expressions and our tears trying to escape, I could see my son’s puzzled expression I could see it all but I couldn’t do anything I felt helpless it was like I was floating. I wanted to scream and shout and cry but I just couldn’t I was just numb I was nodding like I understood everything that was being said but truly I was just going through the motions.

    I held my son’s hand while they stabbed him with needles, I calmed his fears and so did my husband even though we wanted someone to calm our fears. Once the biopsy was done we were told they were sure it was Hodgkins Lymphoma and a treatment plan was drawled up straight away. We were told Hodgkins Lymphoma was a treatable cancer and that it was most common in teenagers but this did not crush Isaiah’s chances of a full recovery.

    We went home and before we told anyone else we had to explain it to Isaiah first as we knew he did not truly understand what was happening so we sat down and explained what cancer was generally to him. Tears were shred but we did not breakdown completely…we couldn’t not when we had him staring us down like we had all the answers and strength he needed to get through it. So we put our feelings aside and answered all his questions even the hard ones, the ones you would never wish to come of your child’s mouth.

    Once he was asleep I rang my parents and my husband rang his, we calmed their fears and answered all of their questions and promised they could visit soon. Trying not to beg my mam to come round that very moment because I was scared and needed my mammy despite being 32years old all I wanted was my mam to hold me and tell me it will be alright because that’s what mammy’s do. Isaiah’s little brother is only 14months old so we didn’t have to explain to him which we were thankful for as we have read stories about the pain siblings through with it all.

    We didn’t tell anyone else that night as it was already pretty late and we were all exhausted, it was not until the boys went to bed that I and my husband just broke. I was in the kitchen doing the washing up and I just broke, curled up on the floor and cried like earth shattering sobs. I didn’t sleep that night my mind full to the brim with panic, upcomming appointments, worries of how’s we were going to tell everyone else, extended family so my siblings, cousins grandparents, friends, church friends, his school, his friends, his Rugby coach and teammates, neighbours.

    The hardest person to tell was his old social worker, both boys are adopted and this social worker has been a best friend, a protector, a hero and a mammy figure to Isaiah she loves him just as much as we do, it was heartbreaking to see her just break we have tried very hard to be there for her and believe it or not we felt guilty for making her hurt so badly even though we knew it was out of our control. Slowly we went through the motions of telling everyone but also keeping things as normal as we could for Isaiah.

    3yrs ago me and my husband lost our biological son at 7yrs old due to a hit and run driver it is a pain I can’t even describe to you it’s a pain I wish for no parent to go through, me, my husband and the rest of our family are still dealing with strong grief and I feared now with this it would put us back and for me personally the many days of treatments have sent me back to 3yrs ago the feelings of lost and helplessness returned full force. Despite us still recovering everyone has pulled together to help Isaiah through this because I know Jude (son) if he was still here would be fully disappointed if I just rolled over and surrendered when Isaiah needs me the most.

    Treatment started with a low dosage of chemotherapy and radiation, despite it being a low dosage the chemotherapy truly took everything out of him, it was horrific seeing him fight through the side effects, I hate that kids don’t have enough treatments options so they are forced to have adult outdated treatments that are enough to make full grown men cry in pain let alone frail kids. It does not feel right that we are being made to cure this posionus disease with more posion.

    Time went on and we were just getting used to our “new normal” treatments, new diets, steroids, ANC counts, medical masks and bowel movements diaries. Then one day we got a phone call from his oncologist saying “we have been looking over his bloods and scans again and we have made a mistake can you come in straight away” I was adamant that this was my dream coming true that we were going to get there and that they were going to tell us that he didn’t have cancer that they made a mistake and it was actually something else…unrealistic I know but what else could they of wanted to say?

    So we got there and there was a new doctors standing there with other doctors behind him I remember feeling so puzzled yet I knew this was not my dream. Isaiah’s Oncologist explained that Isaiah’s cancer was not responding to the treatment and that the bloods was not exactly matching the ones of other Hodgkins Lymphoma patients. he kept apologising that’s what I really remember that he looked distraught and kept saying they never really see kids with cancer so mistakes would happen at times. The new doctor stepped forward and explained he was a Oncologist that specifies in sarcoma which is a cancer that effects the bone and soft tissue. He said he would be taking over Isaiah’s case as Isaiah has a very very rare aggressive form of cancer called Epithelioid sarcoma he explained that he has never heard of it in neck of children before and the rest of the team expressed they had not heard of The cancer at all let alone in the neck. He’s the only person in our district to have this kind of cancer and was thought to be the only child with it in the neck in the whole world.

    Again I was distraught…I thought they were going to tell me he didn’t have cancer but no….one of the doctors even asked if we wanted to skip to hospice as they honestly didn’t know what they could do. They told us not only does he have cancer but he has a more rare and aggressive kind than originally thought…it was like he was being diganosedall over again. A new treatment plan was draw up our new Oncologist admitted that he has never treated anyone with this cancer before let alone a child so this would possibly be a trial and error something u don’t want to hear when your child is involved. But we didn’t have any choice so we had to trust him. After many confidence calls it was agreed He would have 30 rounds of radation straight away and he would have a change in chemotherapy called doxorubicin which is a common chemo mix used on children. After more scans it was also agreed that he would have surgery to remove the tumors and reconstruct the neck as his largest tumor which messaured about 7inches and a half has wrapped itself round his spinal column and is as close as you can get to the spinal cord without touching it.
    So again me and my husband had to start telling me the new diagnosis and the grave prognosis which came with it, it was like a bad nightmare I was living again and again. “I thought it was more treatable” “what do you mean they got it wrong?” “How do you know they have it right this time” “I’ve never heard of that” “it can’t be…I’m so sorry” was all things said by family and friends after we told them the new type of cancer diagnosis he was given.

    I never felt so alone in my life, thinking my son was the only child in the world with this cancer, couldn’t even be sure the treatment would work as he was like their gunipig. I researched for hours and hours finding nothing at all about ES in children and hardly anything in it being in adults either. There was articles about 70yr olds having it in the neck but different locations and 1 article about a teen with it in their hand but that was it. It wasn’t until I found contact of a mother who had lost her son in 2015 to the exact same cancer in the exact same place the rumour is pretty much the same size and his too was wrapped round the spinal collumn and had the surgery they plan Isaiah to have. I’m still in contact with her and despite the fear I felt after finding out her son had died from it but that was overpowered by the hope that Isaiah was not alone. She is from the USA and I’m still in contact with her, she’s been so helpful and has even given me loads of useful information to pass onto our medical team to better help Isaiah I suppose it’s the same feeling you get when you find another mother of a child with Felix’s cancer. She runs a foundation called the Elijah foundation which is helping find safer treatments for children especially ones who have ES so that’s amazing.

    Isaiah was taken off doxorubicin as sarcoma is not known in responding well to chemotherapy which upset me as Isaiah had to go through terrible side effects. Doxorubicin was so harsh on his small body one night it made him so unwell that he hallucinated seeing my late son who he never met, his temp reached 109F and he could not keep anything down. The chemotherapy had suspressed his diagram which has resulted in weakens respiratory muscles so he was taken off the chemotherapy straight away.

    Isaiah has finished his 30 rounds of radiation which he had every week day. Sadly it was unsuccessful and scans showed it hardly shrunk the tumours so now he will have another 10 rounds in the same location with the help of a chemotherapy pill called Temodar which is used with radation to make it more successful, he’s also on steroids to help with his resspiratory system and immune system. His surgery has been scheduled for the 4th of December at Great Omond street hospital in England, London it is estimated to take 12 hours.

    We are now just getting used to life of Sarcoma despite the heartaches we are finally finding our footing though we are always ready for those curve balls cancer likes to throw at us. As any mam in this situation I started searching for others in similar situations and I came across your blogs which I have read and every single one have made me cry… tears of relief, tears of pain, tears of hope and tears of joy. Your blogs truly inspire me to get through this time, you and Felix both show so much strength that I’m almost jealous of it, your blogs give me a friend when I can’t find any who really understands.
    Cancer effects the whole family and that includes friends too, Isaiah’s friends and cousins are all learning things they really shouldn’t at their age, they know Isaiah can not play rugby anymore, they know he gets tired easily, they know what to do and what to look out for if Isaiah becomes unwell they know that after his surgery Isaiah is going to need lots of rest they know that Isaiah will not be in school to see the new school year. all this yet they are taking it all in their stride yet sometimes they break because they are scared for their friend/cousin. Some want to come round all the time to see andslme are more weary because they are anxious to see their friend as if he has changed somehow.
    My parents hurt like you said in your blog they hurt for Isaiah but also they hurt for their babies (me and my husband) they are hurting because we are hurting. My church friends some of them are even beginning to question god because they can’t understand why any god would give something so cruel to a small innocent child who has already gone through so much. Cancer indeed does effect everyone that patients meets.

    I have many unpublished blogs I have written since the death of my son Jude and now blogs about Isaiah’s cancer and it was not until now that I have thought about sharing some and if I do you will be the first person I let know.
    Thank you so much for shining a light on childhood cancer, something so unknown something so misunderstood even by myself before July. I wish you and your family nothing but the best and all the love in the world all the way from wales. I’m not the only one..

    Your blogs have saved me so thank you ♥️

    Best Wishes
    Rosie

    I tried to email you provided but it kept bouncing back so please don’t fear to contact me via my email which is: RosieDriscoll550@yahoo.com

    Liked by 1 person

  2. Wow, that comment is such a powerful read – just about holding it together here! Talk about motivation for why we do what we do though eh?

    Like

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