Your story

 Tell us your child’s  story on here.

 

14 thoughts on “Your story

  1. My Chloe’s story
    On 2nd of October 2007 Our daughter Chloe age 4 and a half started to pass blood in her urine

    so we called the NHS helpline.

    They thought it was another urine infection and that we should go and see her doctor.

    The next morning we went to see the doctor; he thought it was a urine infection too.

    He sent off some of Chloe’s urine for testing which would take a few day’s to get the results.

    Later that day after Chloe got in from school, Chloe started to pass more and more blood when she went to the toilet.

    I looked at her tummy when I was getting her changed, it looked really big.

    We took her to hospital and they thought it was a urine infection too but wanted to keep us in for tests.

    Chloe had some bloods taken around 11 pm.

    The next morning there was a ward round around 9/10 Am.

    The doctor asked a few questions and then felt Chloe’s tummy.

    Little while later Chloe, her dad and my self was asked to go into a little side room, there were 3 doctors and one nurse there.

    One doctor started to talk with big words like they do; I did not know what they were on about.

    I asked them what is it and the next word was Tumour.

    I have never felt so much pain .

    The pain did not go away for a very long time.

    After the chat they wanted Chloe to have a scan so she did plus another one around mid night…

    The next day we were taken to GOSH for? For a week or two!.

    That was the start of op’s ,Chemo, Radio ,x-ray’s , scan’s, urine infection’s, hair loss, loss of strength in leg’s, problem’s with loss of appetite and so on.

    Chloe was stage 3 but later in her treatment we were told the cancer had spread to her lung.But radio did its magic thank god. Chloe is now 4 years in remission and is doing well.

  2. With my campaign work ,please have contacted me on line or posted their stories on my campaign site.Here is a few of their stories that have been posted on my campaign page over the last few years.

    Jill Berladyn
    I think you are doing an amazing job here Tracy. I lost my son who had a brain tumour just before his 9th birthday and I had no idea of how many children there are out there suffering with a variety of cancers until I was suddenly faced with it. People/parents need to become more aware and know what signs to look for…, as we all know the sooner this condition can be diagnosed, the better the chances of survival and recovery is. All the very best in your campaign. Please listen everyone.
    I would just like to add, when children are very young they cannot explain very well how they feel and so for parents to be aware of the signs could really save a life by catching the cancers early!!!

    See more 23 June 2010 at 22:01

  3. Jillian Motley
    Hi Tracy. Do you know one thing that really surprised me when my son was diagnosed with having a Wilms Tumour, that not one other parent asked what the symptoms were. As parents we can’t afford to bury our heads in the sand where our childrens’ health is concerned. I hope your campaign goes a long, long way xxx
    08 May 2010 at 17:34

    Jillian Motley
    I agree, some people!!! I only took Laurence to the Docs because he was ‘weeing’ a lot and his tumour showed up on the bladder scan. According to the Prof & Docs, ‘weeing’ a lot is not normally a symptom…but it’s stopped since he had his kidney & tumour removed…so now they’ve had to take notice. Little things like this would normally be overlooked; I know everyone at the time told me it was just what kids did because they liked to look in different loos; it was a “boy thing” etc etc…luckily I followed my instincts because if I’d listened to them, I’d not have taken him to the Doctors. Just snippets of information like this in a brochure would raise some awareness and could save lives xxx

    08 May 2010 at 17:50 ·
    Julie x

  4. Laura Sandys MP
    i think that what Tracey is doing bringing so many families together is wonderful and i support her work on behalf of her daughter Chloe and so many other mum’s.
    Laura MP

  5. Amy Harrison
    our little man was diagnosed at 4!! 3 and half years of daily chemo, bone marrows, lumbar punctures, blood and platelet transfusions, numerous too many to count, hospital stays, pnuemonia, steroids.
    You all know the processes, and yes I agree more should be discussed about Cancer, Jackson was given 8 weeks to live, but …he is here in remission, he is stubborn and a fighter and we are grateful for everyday, he has just turned 10!
    Our thoughts are with you all that have lost family and friends, we know of many, bless you all.
    Humbling x
    See more25 July 2009 at 17:20

  6. Katie Drinkwater
    I AGREE!, My brother WORREN DRINKWATER fought a long hard battle against cancer , My family learnt a lot over that time as regards to different cancer types and ways to treat the cancer. My mum looked after my little brother and nursed him, we did not want worren in a hospice, so my mum sat through classes as such, …she learnt every procedure that was used to care for Worren.
    We lost Worren 12/07/2004 he was nine years old, it has been very hard to cope without him but personally I feel my strength to carry on is because of him and his fighting spirit and great memories.
    I do remember that during the time my brother was unwell, a doctor was brought into Worrens primary school to explain to the class about Worrens illness , I think that some sort of booklet should be available to the public ,

    All the bestx

    16 July 2009 at 07:33

  7. Michaela Pettet Was Bolton
    In july 2010 my son at 15months was diagnosed with a wilms tumour, I was distrought, couldn’t focus, he started on chemo 2 weeks later had a months worth then a rest for scans to which they told me the chemo did no good but still went ahead with the operation. They removed a 12 inch tumour from his tiny body. Had further chemo and thankfully we have just reached 9 months in remission. He is my fighter. X
    · · 29 August at 23:39

  8. Becky Lewis
    it took ten months to diagnose my son,he was 2 weeks from death. and the symtoms should of been so obvious to the doctors. he had a rare cancer. i was so angry that it took so long. he had advanced npc by that stage ,tumours in every cavity in his head and neck. im pleased to say his in remission and starts college tomorrow . well done tracey with what u r doing.x

  9. Vicky Lianne Clifton
    Love your idea Tracy. An inspiration. x
    Hi Tracy. Hope your well. Im sorry Ive took over and done a disscussion, id wrote too much and it wouldnt let me post on the wall. Hope you dont mind. I have just come across your page and think its a great idea. My son Riley, just turned 4, was diagnosed at Queens Med…ical Centre in Nottingham with Wilms on April 26th 2010 (3 years old at the time), luckily he was a low stage one and after 6 weeks of chemo and a huge operation followed by a further 6 weeks chemo he got the all clear in August 2010. Rileys doing really well, hairs growing back lovely and putting back on the weight he lost but as youve stated the fear never goes away. Weve just had his 2 monthly check up this week and still all clear which is fantastic but them check ups are a stressful time as you must know. My Grandma always says, as my mums had Breast cancer and now my son with Wilms….. “If you’ve never had cancer, you spend your life worrying you’ll get it and if you’ve had cancer, you spend your life worrying it’ll come back” So true! When we first got Rileys diagnosis I felt my world had fell apart, my son with cancer??? why??? It was no ones fault but my anger firstly was for the consultant, he gave me the news therefor in my eyes in my shock and hurt it was his fault. As time went on i blamed myself, Im his mum, I should have known right?? Now life is getting calmer and a little more normal I dont blame anyone. However I do think that if more parents knew each and every childhood cancer that exhisted, causes(if known), signs and symptoms, cancer wouldnt get to them high stages and we wouldnt have as many loosing their fights. We were given few booklets and information, like you told to look online. My son this year was told he had cancer….. i knew what cancer was but when they said Wilms…. this I had no idea what it was. Why? Ive met so many mums along Rileys journey and have heard Non- Hodkins Lyphoma, Ewings, Neuroblastoma… I could go on! Untill My son had cancer and I was on a childrens cancer ward WHY had I not heard of most childhood cancers?! This is why your booklet is a fantastic idea and I wish you all the luck in the world. Vicky x

  10. Jayne Dunford
    Hi Tracey what you do is fantastic. My son is 11 years old and has been in remission now 4 months but we were told twice that my sons lumps were just gland problems. After looking up on the internet and speaking to other poeple like your self we were not happy with this so we paid to go private for yet another opinio…n and my son was in theater with 48 hours and started his chemo with 2 weeks of seeing the doctor he had Hodgkins lymphoma parents need all the help and information they can get. You have our support 150%.
    15 August 2010 at 22:46

  11. Lucy Cauldwell:
    December 21, 2011 at 11:20 am
    Hi Tracey, My son Callum was diagnosed with stage 3 intermediate wilms tumour when he was 5 yrs old but he had no symptoms, none at all… we went through 5 wks of chemo to try and shrink the tumor before they could operate which was in his left kidney which didn’t work, so they went ahead and removed it they followed this up with chemotherepy and radiotherepy ….He is now 8 yrs old and we are now 21 mths off of treatment and we are in remission, good luck to you and chloe and keep up the good work xx

  12. Clair Walsh:
    November 9, 2012 at 9:21 pm
    Hi Tracy,
    I don’t have a sick child, however, my husband has a brain tumour which was diagnosed when I was 7 months pregnant. I can’t imagine how parents cope in your situation. Its simply hideous to feel so helpless and not know where to turn. I wish I could afford to donate but now my hubby doesn’t work as the breadwinner and I struggle on part time work. I read you have a Facebook page. I couldn’t see a link but if you could post one I would encourage our friends to donate on his behalf towards your goal. You and your family are amazing and until you’ve been in the boat I don’t think people understand how hard it is. I’m so happy that your daughters treatment has been successful. Well done Chloe, what an amazing creature you are.
    Clair Walsh xx

  13. Audra Mitchell
    Hi Tracy , My daughter Sarah has been in remission 2 yrs past in february ( stage 3 wilms ) and she got her last scan after a year and a half of check ups and had her last x ray in January , we go every 4 months and its just her , height, weight and blood pressure they do now , and the doc has a feel at her tummy ,neck and under arms , we are only with the doc for about 10 mins , i was very scared at first as this was our securty blanket , but sarah is not as nervous and high… at going now , my main worry is that they could not feel sarahs tumour through her tummy as it was that high up on her kidney , so she did not even have a fat tummy , so i guess thats always at the back of my mind ,u just need to have faith in the docs , but u will always worry no matter what anyone says , hope everything continues the way its going just now for u xx

  14. Amy Lou

    It was over Christmas 2003, when we had been noticing a change in Jack, usually he was very hyperactive, never wanting to stop, but this had changed in the last few weeks, we initially put this down to him starting school, reception year, being exhausted with the parties for christmas and the overall excitement, little did we know.

    Over Christmas day & Boxing day Jack was still quiet he complained he did not feel too well, so we asked if he wanted some Calopl, he said yes, he then had a lay down and rested for a bit, his sister was only 9 months old, Daisy, she was crawling about everywhere, and the other cousins were still playing with all their gifts.

    After christmas, my parents (Amys’, Jacks mum) came to see us again, to see if Jack was any better, as we had celebrated Christmas over their house, We mentioned that he still is not right and we thought he had played a bit rough as he had many bruises over his legs, that he also looked shattered as he had black rings under his eyes, my mum asked to see him. When Mum and Dad saw him, they agreed he did not look at all well, Kevin and I said we would take him to the Dr’s on Monday, my mum said she wanted to ring the emergency Dr’s just to “run it past them”, we heard her speaking in the hall and she mentioned to the Dr, that alot of the symptoms looked like Leukaemia, he agreed Jack needed blood tests done to rule this out and to go to the Dr’s on Monday, if Jack got worse to bring him up. Monday came, we took him to the Dr’s he did not seem too alerted, we asked if Jack looked pale, he said he did not know Jack enough to say yes or no, we said we wanted blood tests done to see what was wrong, as we know him and he is not well. We finally received the blood forms, Kevin dropped me at work and then took Jack for the blood tests, by 10.30, I received a phone call at work from my Dad saying that the Dr has rung and they want us to take Jack straight to the Childrens Ward, he had already rung Kevin who was on his way to pick me up. When we arrived, the Drs were waiting for us, at the door, Dad was there so was Mum, she is a midwife so just came around to the ward when phoned. We were then told, the blood tests show it is highly likely Jack has Leukaemia, however he needs to go to a London Hospital to have this verified as soon as possible.
    To be honest the room was at a stand still, Jack was playing so was Daisy, Mum was crying, Dad was crying, Kevin was crying, I just remember asking questions, I do not think it initially hit me. Phone calls were then made, I do not know by whom, but to Kevins Mum, Kevins Daughter Leah, my Sister, my Brother, friends.

    We were ambulanced to the Royal London Hospital, where again they were waiting for us, my Dad kept hold of Daisy at home, Mum and Kevin followed behind the ambulance in the car, we were explained that Jack needed to have Bone Marrow Aspirations done to verify the diagnosis and lumber punctures as until this is actioned, they are not willing to confirm anything, they wheeled him down to theatre and he was sedated, that was very scary, 45 minutes later we had our little man back, sound asleep, but back, we now had to wait until the following day to find out the diagnosis, that was a very very long night.
    The next day at about 11.00a.m Kevin and I were asked into a private room, where we were told, Jack definately had Cancer, in the form of Leukaemia, then it hit home. We wrote down all we were being told, well as much as possible, drugs, side effects, Jack possibly being wheelchair bound for part of his treatment, steroids, loss of hair, sickness, hospitalisations, length of treatment, success rates, relapses, brain Cancer, testicular cancer, risks of chicken pox, measles, pnuemonia, these could kill him, boys having 3 years treatment girls having 2 years, everything, then Kevin asked “How long would Jack have had if we had not taken him to the Drs and requested blood tests?” to which we received the reply that is haunting, a moment we will never forget. “Jack with the Cancer in the stage it is, he could easily be in a coma, he will have approximately 8 weeks life expectancy if he does not receive any treatment”, to which we replied, “then he may not see his 5th Birthday!” we were then asked to agree/disagree to Jack receiving the Chemotherapy and the whole other host of drugs, for us, we said yes, yes, yes, go ahead, start it now, dont wait, I signed the relevant forms. We were then told they will also test Jack to see if it could possibly be in our family genes, what about Daisy? We were in the room for about 45 minutes, a nurse came and said Jack is getting very upset he wants Mummy and Daddy, our lives had totally changed our normality gone, we now had to go back to Jacks room and talk to Jack, our fight had only just begun!

    Jack is currently in remission, to be told that was amazing, Jack is stubborn and a fighter, if he wasnt he would not be here, he still has alot of problems, he is awaitng ed psych, physiotherapy, orthapedics, he has had his sessions with psycholigists and counsellors. Jacks education has been dramatically effected so had his social skills, however, we count our blessings every single day that we still have him here!!!! It so easily could have been so differnet xxxxxxxxxx we also thank he amazing Dr’s in London and our family and friends that have stuck by us through this, you know people more than ever when something threatens your family xxxxxxx
    30 July 2009 at 22:37

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