“We send love, strength and support to all families going through other rare illnesses - please reach out for support. With individual rare condition cases worldwide, there are no forums or anything to become a part of and discuss with families that have been through it, and with no treatment guidelines already known about, it can make it really hard when doctors themselves aren't certain on what the best plan is, so any form of support is definitely needed - I believe this charity will be a huge help to families.”
Story: Noah’s journey began on his 2nd birthday when he was taken to his local hospital and was found to have 2 viruses - rhino-enterovirus and metapneumovirus.
He was struggling breathing and ended up being moved to the high dependency ward. When admitted to Leeds Children’s Hospital Noah had no appetite, was losing weight and had a huge mass in his abdomen.
Originally thought to have neuroblastoma cancer, Noah was diagnosed with a rare disease called Lymphatic Malformation.
During 2022 Noah had two operations of sclerotherapy treatment to try and shrink the mass. In December Noah had successful surgery and the mass was removed.
Diagnosis: Lymphatic Malformation.
When Diagnosed: 2021.
Treatment and Outcome: Noah is recovering from his surgery.
Support in our community: Noah’s mum Collette commented “We're looking forward to supporting you in your fundraising events in the future to help raise funds for this amazing charity.”
Collette goes on to tell Noah's story in her own words…
Noah's journey began on his 2nd birthday, in December 2021. He and his sister were full of cold and woke up sounding awful. Noah had little interest in his presents as he was too poorly. The day progressed and he didn't seem too bad, then went downhill, so we got an appointment for them both through 111 and headed off to have them seen. Both needed admitting for different reasons. Once they'd been seen at HRI, midnight struck and half an hour later, our daughter was allowed to be discharged with antibiotics. Noah, however, needed more than that. We ended up in hospital for around a week, as they found he had 2 viruses - rhino-enterovirus and metapneumovirus. He was struggling breathing and ended up being moved to the high dependency ward. We thought maybe because of lockdown and the fact he hadn't been exposed to germs his whole life, that this was a repercussion of contracting the germs that had come home from school with his sister.
Once home we finally thought we could get him better and recovered and look forward to Christmas. Unfortunately, on Christmas day Noah took a turn for the worst - his tummy was blown out so huge and felt rock hard. We tried everything thinking it may be something simple like trapped wind, but nothing helped. He was in pain and spent the whole day flaked out on the sofa with hot water bottles and dosed on medicine, he didn't get to open any of his presents as he was just so poorly and had no interest at all. We knew something wasn't right, but not once did we expect it to be something really serious. Boxing day came and he was no better. We rung 111 to explain and get some advice, because his breathing was now being affected, they sent an ambulance. Noah and me climbed on board and went to our local hospital A&E so he could be assessed.
They did some standard tests and monitored him overnight, as well as x-rays and an ultrasound the next morning. After that a group of doctors came in and asked me to get my husband to come in. I knew then that this was serious. My stomach turned and the tears started. This was the beginning of the worst time of our lives. I shakily called Steve to ask him to come in asap. Whilst waiting for him another doctor appeared, he was trying his best not to say anything, until I asked if they thought it was something bad. He said they were looking for tumours. A word that no parent wants to hear.
When Steve arrived, the doctors explained how they thought it was cancer but that because it was a bank holiday, they thought it best to transfer us straight to Leeds Children’s Hospital to the children's cancer ward. That they would be better equipped for doing the MRI and could do a more detailed one than waiting for one in our local hospital to be done. I don't remember much else from that conversation, I crumbled, Steve felt angry that this was happening to our little boy, yet we had to pull ourselves together for walking back into the room our children were in.
Leeds Children’s Hospital
When we arrived on the cancer ward we were shown to the bed that Noah would be staying in, but were told very little. No tests would be happening that day (27th Dec) because it was a bank holiday and low staffing alongside a waiting list meant they'd need to ring and see when Noah could be taken for his MRI scan.
I'm not alone in saying this was the very worst part of the journey. The unknown. Seeing your baby so sad, scared, with my husband and other child having to find a hotel for the night so that they were nearby. I remember this next bit so clearly and it still upsets me.
A doctor in green came in to talk about the kind of treatment that would be needed. I asked quite clearly "so is it definitely cancer?" To which her reply sticks with me "yes, it would be a miracle if it isn't!" That she sees these all the time. She then proceeded to tell me the survival rate on this group of cancers. This broke me.
Looking back, she was clearly trying to be positive, but it didn't come across to me like that at that time.
I don't remember much about the next few days. It was a lot of cannulas, blood tests, keeping him dosed with pain relief. Trying to find out when the big tests would be, only to keep being told of the backlog due to the Christmas holidays. Noah was barely eating and seemed to be deteriorating badly. He was bed bound and losing weight rapidly. We had been told it was cancer, but because it wasn't an official diagnosis, it entailed a lot of waiting, isolation. With only one parent allowed on the ward we did a parent swap every day. It was extremely tough on us all and I do recall feeling very low, crying my eyes out whilst stroking his gorgeous hair and face as he slept, thinking how I was losing my little boy and he needed someone with him always. Just typing this still makes me cry that I had these thoughts running through my head, that there was a part of me that needed to stay here for Amelia, but how could I also continue life without Noah too?
New year's eve came and we still knew no more. I was in the hotel and started having a panic attack. I had anxiety through the roof and felt so scared and alone. Fireworks going off outside, many out celebrating the new year, and my world had fallen apart.
When the day of the MRI came around I crumbled to the ground after having my small 2yr old son put to sleep in my arms for the first time. He was so scared and upset and tried to fight them as they did it. He went floppy instantly and I was rushed to lay him down, kiss his head and get out the room quickly. This broke me seeing him that way, and also that I was having to leave my son and trust that he'd be looked after.
When the doctors finally had results to discuss with us, they showed us the huge mass in his abdomen area (17cm x 12cm x 10cm) - which they'd already got a rough size from via ultrasound that they'd done a few days prior to the MRI. They told us that they no longer thought it was cancer, but a rare disease called Lymphatic Malformation, which they think is coming from his bowel mesentery. They discussed how possible surgery to try and remove it may be an option, but that they'd likely need to try and shrink it first, with it being so huge, and also that they'd possibly need to remove some bowel if they do the surgery.
Steve and I were having to communicate via text so that whichever parent was getting this information, could try to keep the other updated as only one of us was allowed at any one time, and siblings were a big no. We were left with loads of questions that we accumulated between us and tried to jot down ready for the next doctor’s rounds. I'd like to say we were relieved by this, but really it just opened a whole new door of researching this disease ourselves and questions on what happens next, and how life threatening it was.
It was hard to believe that this was no longer the neuroblastoma that they initially thought. This plays havoc on your mind. Whilst we're very grateful that it turned out not to be, it's still very difficult because Noah has an extremely rare case, meaning the doctors don't know enough about it to be able to give a set plan on what happens next.
One year on
During 2022, after many visits to Leeds Children’s Hospital, Noah had two operations of sclerotherapy treatment to try and shrink the mass (there are hundreds of cysts together, and they have targeted the big ones to drain fluid from and shrink, the smaller ones they can't do as it would be too risky if they missed the cyst when injecting the treatment).
In November 2022, we had to be admitted as Noah wasn't able to keep fluids down, and they thought it was best to have him in for assessment in case he needed a drip, to prevent him from dehydrating. On this occasion Noah was moved to Ward L50 where he continued his drip and was monitored until discharge.
Whilst on this ward, we found out about The Millie Wright Children's Charity. We read the leaflets, searched online and found out more about this amazing family. We were saddened to see that Millie had lost her fight and that this charity was set up in her memory - we had really hoped the outcome was different. However, her family have made the biggest difference in creating this charity.
In December 2022 Noah had surgery to remove the Lymphatic malformation - this has been a success!