The look of relief.

The look of relief.

“Life is different when we discover what is deeply important to us” (Stephen Covey).

Yesterday was Jack’s 12th time in the MRI machine and god knows how many times under the X-ray machine. His last MRI was 6 months ago and so the team at Alder Hey had a good timeframe to review changes in the images and to see how well the treatment had been working.  We are all completely relieved to report that there has been marked improvements on the skull and hip lesions he presented with back in February this year marking the start of his relapse.  This doesn’t change the course of treatment, he will continue to take oral chemotherapy until Spring 2020 when we are hopeful he will ‘ring the bell’ and close door on this chapter of his life.

Unfortunately, one of the drugs he has been taking orally (methotrexate) has made his liver work extra hard and his bilirubin levels are at the point that the team advise to stop treatment to give his body time to recover.  I noticed the whites of his eyes were ever so slightly yellow a few weeks ago and raised it with the team who have been monitoring it since.  He will have bloods again in 2 weeks time which will determine whether they can start administering it again.

A few weeks back in clinic, you might remember me saying he had walked clean in to a door (while walking the corridor with his headphones on and iPad in his hands!) and he banged his face and the area on his chest with his port-a-cath.  Since then it hasn’t ‘bled back’ properly, this is a test the nurses do before administering any drugs in to a port or central line.  We had to go for x-ray to check it was in the right position.  Jack’s consultant had suggested that we could maybe remove his port during maintenance treatment as it’s not needed.  I had asked to wait until the results of the scans yesterday before we agreed.  Jack’s favourite nurse Tash (and the only one who could successfully access his port without him screaming the ward down) had the pleasure of doing the last flush and we told him he could have it out.  As you can see by his face, this meant more than anything to him.  I’d be lieing if I didn’t say I am a little apprehensive about it but seeing his little relieved face made me realise it was the right move.

I’ve just got back from meeting his teacher for parents evening, I honestly couldn’t be prouder.  He is achieving more than many children at his age who don’t have half the perceived challenges he has had since starting school.  He’s excelling in all areas, is popular and caring and has a great attitude to work and school.

Hearing Mr Roberts’ words was a perfectly timed boost for me personally as tomorrow I too am enrolling back at school.  A few years ago Lee and I started to explore the possibility of creating an organisation that would provide support to families and children in a similar position to us.  It’s no secret that we have always approached Jack’s treatment with an air of optimism and positivity.  We felt that this had not only helped us to cope with what our bay was going through but also helped Jack’s ability to cope with the treatment and reciover so well from the bad days.  We agreed that we could show others how self-development and self-care in the form of mindfulness, meditation and other holistic practices could help their families too. We discussed offering one to one coaching, peer to peer support and a safe place to explore feelings and methods of overcoming the psychological barriers that arise when parenting a sick kid.  The aim is that the project will improve the mental well-being of families and patients who are involved in a long term treatment protocol for a variety of conditions.

In April this year I quit my job and applied for a place on The Lloyds Bank Social Entrepreneurs Start Up Programme, in partnership with the School for Social Entrepreneurs and partly funded by Big Lottery Fund.  There were 150 applications; a group interview, panel interview and Dragon’s Den style pitch and I was delighted to be one of the final 20 ‘Social Entrepreneurs’ with a place on this years’ programme.  I have a lot of learning to do but I have the most inspiring mentor in my 7 year old hero, and darling son.  If he can approach life with such vigour and determination (after all the shit its thrown at him so far) then Mummy can buckle up, get her head down and create an amazing social enterprise that will help other families to grow out of their challenges like a beautiful big Positivitree.

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Day 30, Childhood Cancer Awareness Month. The Mums.

I had absolutely no idea how this month was going to pan out. I’ve never participated so actively in an awareness raising campaign before. I had totally underestimated the time, the emotion and the energy of would take to do.

I am sat here as an emotionally and physically tired and weak woman. The commitment was a lot greater than I anticipated and I am suffering as a result.

This isn’t a pity party though, i’d go through the suffering a million times over if I knew that the project was guaranteed to make a difference. In fact I WILL go through it again, and again because I am DETERMINED to make a bloody difference.

We have shared 34 unique stories this month of children who have gone through some of the absolute worst that life has to offer. 34 stories exclusively shared by their Mum’s. It wasn’t that I only asked mum’s to share. I asked some private groups which have a mixed membership but it just so happened that it was all women that came forward.

I felt it was only right to honour them in the last post of the month. Their unique experiences in the club nobody asked to join have been seen close to 100,000 times across two social platforms. 35 ordinary women, joining forces in order to share their story and raise awareness and the profile of paediatric cancer. It worked too, we have had interest from the media, we have had people coming out and sharing their experiences too and we have educated other people and each other on the broad spectrum of diseases that falls under the ‘Childhood Cancer’ banner.

I am humbled, grateful and in awe of what we have achieved together and I want to thank every one of you from the bottom of my heart, for helping me to do this.

Some of you had never written or shared your story before and you all did it beautifully.

Some of you have set up charities in memory of your babies, you inspire me to create an organisation that will help parents like you.

I read a quote the other day that summarises this project really nicely “turn your wounds in to wisdom”…..And I think you’ll agree, we absolutely have.

Day 29 Childhood Cancer Awareness Month. Emma’s story; Rhabdomyosarcoma.

As this is the last story I’m sharing for CCAM 2018 there was only one it could be. If you know ANYONE who has been through treatment for cancer in the last few years, regardless of their age, the chances are they had a unified goal. That goal is to ring the end of treatment bell.

I have always admired the Payton’s and we sponsored Bell Number 50 a couple of years ago in memory of my Grandad Terry.

Here is the incredible story of how they used their experience as childhood cancers parents to start one of the best known cancer-related charities in the country today.

Tracey Payton shares today’s story;

“Hearing the words, “Your child has cancer” is unimaginable for any parent. To then be told that they face months, or even years, of agonising treatment is beyond belief. In September 2013, we were told that our beautiful, happy 8-year-old daughter had a rare form of cancer called Rhabdomyosarcoma, which had wrapped itself around her cheekbone. Following this, she endured months of chemo, an 8-hour operation and NHS funded Proton Beam Therapy at ProCure in Oklahoma. At the time of diagnosis, the end of her treatment seemed like a pipe-dream.

Flying to Oklahoma and being so far away from our support network of friends, family and Ward 84 at Royal Manchester Children’s Hospital was a daunting prospect, but we decided to make the most of our time there and started to look on the internet at ‘things to do’ while we were there. It was while we were online that we came across the ProCure ‘End of Treatment Bell’. It was a brass bell which had been placed by a family who were treated there, and everybody got to ring it at the end of their treatment. We couldn’t wait. This was our target; this was our hope; this was our goal.

Emma had 23 rounds of PBT and rang the bell on March 5th, 2014.

When we returned to RMCH for Emma’s penultimate chemotherapy session, we showed Emma’s video to Helen Jackson, the ward manager. She loved the symbolism of the bell and agreed to use it if we had one made. Emma was the first ringer of the bell on April 9th, 2014 when her last chemo ended. We had another made for the Day Case Unit so that children who weren’t having treatment as an in-patient could also celebrate the end of their treatment.

Two months later, we attended a fundraiser and met Diane, who runs the Beads of Courage programme in the UK. We introduced ourselves and told her how much we loved Emma’s beads and how grateful we were for them. Afterwards, we showed her the video of Emma ringing the bell and she offered to help us to place them into children’s hospitals via The Maria Watt Foundation.

In September 2014, we were ready to send out our first bell. Initially, we offered the bells to children’s oncology units, but it soon became apparent that adults wanted to ring them too and so we extended our offer to all cancer wards.

Four years on, we have sent out 175 bells to wards all over the UK, Australia, New Zealand, USA and Dubai. We have raised around £40,000 which has been used to fund further bells. We receive thousands of photos and videos to share on our Facebook page, with such wonderful messages about how the bell gave families something to aim for. We are thrilled that our little idea gives hope to families every day and that it gives them something to aim for. We are forever grateful for the support we received and continue to receive.

Thank you

Day 28, Childhood Cancer Awareness Month. Jack Rogan; Ewing Sarcoma

Jack Rogan

Jack was diagnosed with Ewing sarcoma when he was just 11 years old. Jack’s Auntie, Claire, has shared their story with us to help raise awareness of primary bone cancer.

Jack had pain in his arm since November 2016, which we initially thought to be a rugby strain injury but it became gradually worse.

He would suffer with frequent pain, which was significantly worse at night and at times felt like he had a fever.

Jack’s life has altered completely since he was diagnosed with Ewing sarcoma in 2017. He started high school in September and did all of a couple of days. He has constant hospital admissions and appointments. Jack is currently having treatment and has completed his preoperative chemo, which made him very poorly. In March, he underwent limb sparing surgery at the Royal Orthopaedic Hospital in Birmingham and had his arm bone removed. Following the surgery, he is now currently having further chemo.

Jack’s chemotherapy has made him very ill. He has ended up back in hospital due to infections and neutropenia (Low levels of white blood cells). The limb sparing surgery was a big challenge for Jack as well as the rehabilitation he is currently going through.

Jack has received amazing support from people around him, even strangers, their kindness goes a long way.

I worried about how he would cope with the treatment as even to get blood was an ordeal. Now, he just takes it in his stride, he is so brave and courageous. It is still early days for Jack and he is still battling so his life is changing every day.

When days are dark and incredibly tough Jack gets through it, his strength and determination is amazing! Even when things are incredibly tough he keeps going.

Sometimes it feels like it is ten steps back, but then a little bit of good news comes your way and this keeps you going!

Awareness is so important! Jack had pain in his arm for nearly ten months. He had numerous visits to the GP and Hospital. He had symptoms yet no one picked up on them. My sister, his mum never gave up and kept going….She trusted her instinct and knew something was wrong.

If his cancer had been diagnosed earlier he would have been out of the end of this battle now – instead of still tackling it!

Day 27, Childhood Cancer Awareness Month. Ruan’s story; Malignant Rhabdoid Tumour (MRT)

Ruan James Shaker was born just a few days before Christmas 2016, four days shy of his due date. He came into the world after a straightforward water birth weighing a healthy 9lbs 6oz. Once home he continued to thrive and we felt unbelievably lucky to have him in our lives. His laid-back nature provided an overwhelming sense of calm. He brought a new dimension to our family, which we all (including his sister, Isla) benefited from. While I was pregnant we often talked about how much more chaotic our lives were bound to become with two children, but strangely the opposite was true. Ru centred us. He was a healthy, happy baby and a joy to be around. I know this might seem like mother’s love talking or rose-tinted glasses, but I often commented to Sasha (my husband) how much more relaxed and content I felt. Ru had brought something very special to our family. His big brown eyes seemed so much wiser than their age, and it was somehow reassuring to gaze into them.

Just six short months later came a date that will forever be etched in our families history. Friday 16th June, after three weeks of GP visits, health visitor appointments, out-of-hours doctor visits and trips to our local A&E, we were now in the Intensive Care Unit (PICU) at Great Ormond Street Hospital (GOSH). In the three short days we had been there Ru had already been intubated, had an MRI scan, had a PIC line inserted (for chemo drugs to be administered through) and had his biopsy operation. Already in his short cancer journey we had heard the words ‘this operation is extremely high-risk, we have only had 25 of this type in the history of GOSH’. The biopsy stage is usually relatively straightforward, but because of the location and size of Ru’s tumour the intubation and biopsy were going to bring their own set of problems. The anaesthetists and consultants could not predict how Ru’s airways would cope with intubation. However, there was no decision to be made – as without a biopsy there would be no diagnosis, and without diagnosis we wouldn’t know which beast we were facing. The operation went ahead and Ru surprised everyone by coping remarkably well with it all. At 7pm the following day we were taken into a meeting room to hear the results. Nothing could have prepared us for what we were about to hear. Not only did our beautiful Ru have a malignant tumour in his chest, but an extremely rare type of paediatric cancer with very little information available and a ‘dismal prognosis’. Cases of survival were in the vast minority.

The next few hours went by in a blur of disbelief, anger and tears. Early the following morning we woke after a couple of hours of broken sleep and headed back to the hospital, knowing that our son needed us and we needed to fight for his chance of a future, no matter how slim that chance might have been. In the two months that followed – we armed ourselves with research, schooled ourselves in medical terminology and threw ourselves into a world of consultant meetings, intensive care and chemotherapy treatment. We spent only a few short weeks on the oncology ward, as most of our 10 weeks in GOSH were spent in PICU with Ru fighting the secondary problems that the tumour was causing. He had an emergency operation with the hope of resecting the full tumour, but it wasn’t possible and it fell to chemotherapy to try and get rid of the remaining bulk.

The tumour was stabilised with chemotherapy but our consultant believed that the deterioration in Ru’s lungs was a clear sign of disease progression. His breathing was getting much more laboured and he was needing more and more oxygen to keep his lungs inflated. Devastatingly in the early hours of Wednesday 16th August, his little body had been struggling for too long and he could not carry on. Ru’s oxygen saturation crashed, and though the medical team tried to revive him there was nothing more that could be done. Our beautiful son took his last breath in our arms, in a hospital room surrounded by love, in the same way he had come into the world just eight short months before. I will forever remember the deep sadness that moment brought, from that day on our lives have changed and our son had been robbed of his future.

Ruan was a complete gift to us and his future should have been laid out in front of him for him to explore and for us to enjoy. Although he was just a few days shy of 8 months when he passed away, I know that our beautiful boy was thoughtful, kind and the most loving son I could ever have wished for. I will forever cherish every kiss, every cuddle and every minute of his short life. I will remember how he would look up at us, his eyes filled with love, holding your gaze for as long as you would let him.

The months have passed by in a blur of grief and attempts at readjustment to life. These months have taught me that like Ru, our grief will always be part of our family now, present in the happy times as well as the sad. Emotions may come and go and some days are harder than others but I also know that we owe it to Ru to try and help fight this battle, for him and all the children still fighting this cruel and indiscriminate disease.

Our lives have fallen into three categories, before cancer, during cancer and after cancer. Every day brings its own challenges but we are determined to remember Ru in all that we do and to give his sister the best possible childhood. My hope is that in setting up a fund in Ru’s name we might help families like us who get thrown into a battle with a paediatric cancer. We do this to support the great work that Grace Kelly Ladybird Trust are already doing and in the hope that other families will have some light to aim for and a chance of a future with their children and free from cancer.”

Day 26, Childhood Cancer and Histio Awareness Month. Rayaan’s story; LCH.

On 18th January 2014 we welcomed our first child, a perfect baby boy named Rayaan Brown. He brought so much joy into our lives. As new parents we delighted over every ‘first’ and every milestone Rayaan reached. He was a chubby, happy and playful little boy with the most calm and gentle nature. Before we knew it, Rayaan’s 1st birthday approached and we celebrated with all of his friends. Everything was perfect.
Just two weeks after his birthday, on Saturday 31st January 2015 our lives changed forever. Rayaan woke up lethargic and unlike his usual playful self. Unable to drink his milk and visible lack of energy we knew something wasn’t right, so we took him to the walk in medical centre and waited to be seen.
Whilst in the waiting room, Rayaan was crying and seemed unsettled. We were trying to comfort him, but within a few minutes the unimaginable happened. He suddenly became unconscious. We were calling his name over and over again, but he did not respond. That horrifying moment sent us into complete shock and we could not comprehend what had just happened. We screamed for help and suddenly Rayaan was lying on the floor of the waiting room with all the doctors surrounding
him, giving urgent medical treatment.

His heart was still beating, but he couldn’t breathe properly.
We felt numb and confused and didn’t know what to do. Everyone in the waiting room watched on and paramedics arrived on the scene after what felt like eternity. They could not stabilise Rayaan because they didn’t have medical equipment small enough for him and in their words had to ‘scoop and run’ to get him to hospital.

Within a few hours Rayaan went from waking up at home with mummy and daddy, dancing to music on the drive up, to now lying sedated in a hospital bed. He was surrounded by tubes and a ventilator to help him breathe.

We were heartbroken and there were no answers.

We were initially informed that Rayaan had pneumonia, but once further CT scans were taken we learnt that it was something much more serious. They sat us down to show the scan of his lungs which showed severe cystic lung damage, not just in one lung – but BOTH lungs were severely damaged. The consultants told us they had never seen anything like this before. They were stunned as Rayaan looked so healthy and had no history of illness.

We just wanted to hold him and take him home so everything would be okay, but we couldn’t. Things rapidly got worse over the following days when both of Rayaan’s lungs collapsed and emergency surgery was needed to help him breathe. They were unable to perform a biopsy of his lungs as he was too unstable, so had to biopsy some mild rashes he had on his skin. These had previously been dismissed as eczema by GP’s.
We were finally given a diagnosis of Langerhans Cell Histiocytosis (LCH) which is a rare blood cancer.  Treatment was started immediately and involved giving steroids and chemotherapy. Rayaan’s case was described by the consultant as a ‘rare presentation of a rare disease’. Maybe only 1-2 per million of cases like his. We had to stay at the hospital from that day onwards. Rayaan was taken off the ventilator after two weeks and showed so much strength when he woke up. We got to hold his handand even feed him and make him laugh. We would read stories all the time so he could hear our voice even when he was sedated and we always had music playing in his room.

He still smiled in spite of so much suffering and we held onto every single moment together trying to distract him from all the medical treatment. He remained so calm and gave us hope, but we only got him back for a short while.
After three weeks, further CT scans showed that the treatment was not working and Rayaan’s lungs were not healing. The chemotherapy also meant that his immune system was unable to fight infections anymore. He suffered further lung collapses and had to have multiple surgeries and drains in his chest to help him breathe. When we were losing hope, we reached out to consultants worldwide including Dr McClain at Texas Children’s hospital. He offered alternative treatment options and never gave up. All of the staff at Princess Margaret Hospital in Perth did everything that they could, but the LCH was too advanced and we were running out of time.

Despite all efforts, our little boy fought with everything that he had left, but he was just a baby and he was getting tired. On the morning of Sunday 15th March 2015 Rayaan passed away peacefully in our arms, just 6 weeks after diagnosis. It was mother’s day.  A day we will never ever forget.  As part of his everlasting legacy and a vision to keep his name and memory alive, we have set up the Rayaan Brown Foundation. It was officially registered as a charity in the UK in 2018 and we hope to achieve extraordinary things in memory of our amazing little boy.

Please support us on this journey on our facebook page: http://www.facebook.com/rayaanbrownfoundation and on Instagram @rayaanbrownfoundation

Day 26,Childhood Cancer & Histio Awareness Month. George’s story; Langerhans Cell Histiocytosis.

Becky shares little George’s story;

“On the 30th March 2014 (Mother’s Day) George was born,  he was absolutely perfect, beautiful but spotty.   The midwife wasn’t sure of the spots so we waited for the doctor,  the doctor came and was convinced it was baby rash so off home we went.   The next day a midwife came out and sent us to the doctor then to children’s A&E thinking it could possibly be chicken pox.  We were sent home again being told it was baby rash.
Over the next few weeks midwives and health visitors would tell us different things it could be, with one even comparing it scabies.
But George was healthy and we were happy.    Over the next few months his skin got worse,   we were told it was eczema.
He had the worst nappy rash and would scream when we changed him and his thick cradle cap.  We could clear it all away at night and by the morning it would be back.    We were given a range of different creams to try.
August 2014 the ear infections started to,  we were given drops, antibiotics and nothing seemed to work.   We got to the point the doctor was making us an appointment every 2 weeks because he wasn’t sure the things he would give us would work either.  He said the infection looked like one found in adults and was rare in children, so was very puzzled by George.
He referred us to a specialist Ear Nose and Throat consultant and we were waiting when the lump appeared behind his right ear.  So, off we went back to the doctors.   At this point George had started to be sick after some of his meals.  Again we thought nothing of it, he was weaning at the time and we assumed it was a change in food.   The doctor sent us to a&e where we saw an ENT specialist at last.   This doctor asked us to come back the next day to see his colleague.   When we did they weren’t convinced it was his mastoid and seemed to think it was a swelling of his skin because the skin behind his ear was so sore.   They sent us off with the promise of another check up in a few weeks.
It was in the next few weeks we noticed a change in George at 7 months he had been cruising the furniture and we were convinced he was going to walk,  this had stopped and he would just sit and watch.  He was starting to be sick after every meal and every milk feed,  he was having his weight checked weekly because he had dropped from the 75th centile to the 25th.   This is when we noticed the lump was bigger.   The local doctor sent us back up to a&e and George lay on the bed watching but never moved.   He never moved as they as the took bloods,  cried but it seemed like he didn’t have the energy move.   I begged the nurse not to send us home again and she promised I wouldn’t leave till we had answers.
My mum, Dad and partner took it in turns sitting with us while the other had our older child.
That night theY admitted us, it was the 29th November and George was 8 months old.
The did a CT scan in the middle of the night and the next morning the doctor told us this lump had made a hole in his skull and was pressing on his brain.   We were sent to Birmingham children’s hospital so they could run more tests and perform a biopsy.
The surgeon who performed the biopsy was lovely and came to see George before he went home.  He was explaining how the operation had gone and told us he thought it was cancer.   My world stopped and to be honest the whole time around that is still a blur.   I can remember my Mum telling me it was OK, and me panicking cos Dan was back in Stoke with Harry and that I needed to tell him.   Luckily I had a good support network at home and three of them happened to be there with me that day and they took control of telling Dan the devastating news.    I remember the next day I spent the day crying as I needed to get it out before my older son who was only 2yrs old at the time was coming and I needed be fine for him.   We had been in Birmingham for 4 days and it was the first time I was going see him.
While he was there Georges doctor came up see us and told it wasn’t cancer it was LCH.   I remember feeling relived but we were told he still need wigglys in and still needed chemo and we were moving to the oncology ward.
However as the time went on we failed to see how George was any different to the other children there.
George started his chemo and steroids and responded really well.  The lump reduced by half nearly straight away and the doctors were happy.  After 2 weeks at Birmingham we were sent home to have shared care with Stoke hospital.
George’s first chemo did not go as expected, he was starting with a temperature and they kept us there to see if it spiked.   I remember another oncology mum telling us to strip his clothes and open a  window to try and cool him down, but it didn’t work and we were admitted again.   I was devastated again, I had only had 1 day with Harry and now I was going away again.   George was still being breastfed so there was no other option than for me to stay with him.
This pattern continued on; George would have chemo, spike a temp and be admitted.   Then in January just after George had finished his initial 6 weeks treatment the lump returned.
After weeks of tests it was confirmed he had relapsed and a plan was put together to start a different, stronger Chemo. It took two months to confirm the relapse and figure the treatment as the doctors at Stoke had never seen an LCH relapse during treatment before. The strong treatment worked and we are now 2 years disease free. George has lost his hearing in his right ear where the LCH was as it ate away at all the bones in his ear. But he is happy, healthy and the strongest boy I know.”