Aaron’s Story

If you would like to make a donation please follow this link: GO FUND ME PAGE

Hugs, kisses and rainbow wishes" for Aaron. Keep strong and keep looking for rainbows in the sky and keep those hopes up high.

 

Hello everyone, we are raising money for a true Little Star who has been having a tough time and continues to fight a battle everyday. His name is Aaron, he is a lovely little boy who has attended Little Stars Deeside Nursery since he was a few months old. He was just 4 in November. He is an absolute pleasure to have and has been so excited about starting school this September.

 

Over Easter, Aaron’s parents noticed that he was trying to smile, his face was lopsided. His left side would remain expressionless where his right would try and form a smile. His parents didn't think anything more of it to be honest, they thought that he was just pretending to be a Pirate!! But then, on Easter Saturday he started to vomit. As he became more distressed, he was showing the same lopsided expression.

 

Initially, they were sent to the community hospital in Deeside, where a doctor diagnosed Bells Palsy. He then referred them straight to the Children's Ward in Chester, where the doctors confirmed the same diagnosis.

 

Easter Monday, Aaron was sick again. Tuesday, his parents felt Aaron was well enough to go out for a walk. That was when they saw a massive change in his coordination. The best way they could describe it, was Aaron was walking like a drunk person unable to stay in a straight line, with his legs wide apart. They went straight back to the Children's Ward in Chester.

 

On Wednesday 17th, Aaron had a series of MRI scans, which devastatingly showed there was a tumour at the back of his brain, that was pushing on vital nerves, resulting in the physical problems he had been experiencing. From there, he was referred to Alder Hey Children's Hospital in Liverpool, to the specialist neurological ward.

 

They were told that an operation to try and remove the tumour had been planned for the following day. The Surgeon explained in more detail about the tumour. It was big ... 4 by 4.5cm.

 

On Friday 17th April, Aaron had the surgery. He was under for 10 hours whilst the dedicated team of Surgeons, Doctors and Nurses at Alder Hey worked tirelessly to operate and remove 100% of the tumour successfully. Further scans confirmed Aaron’s spine amazingly shown no further growths.

 

However, after the operation Aaron had a bit of a set back and was quite sick and had some swelling to his head. He had a CT scan that showed that there was a leakage of fluid. And devastatingly, the results of the tumour was confirmed as Ependymoma, which is cancerous. It is a very rare tumour, that only 50 children a year are diagnosed with it. It is also very fast growing.

 

Aaron needed another scan on his spine, he will also need 4 weeks of specialist radiotherapy which will be in Manchester. His parents have been told it gives a 60% chance of the cancer not coming back, as unfortunately, it could come back anywhere in the head or spine. There is a clinical study that Aaron can be entered into, in which chemotherapy can be offered, and increase his chances over the 60%, but it is only 50/50 that this will be given.

 

Over the following week Aaron continued to be a superstar whilst at hospital, he saw a speech therapist who was pleased that he was saying key words, and able to move his tongue well. He is still too poorly to try any food or drink because of the issues he has with swallowing. Physio have been doing a few sitting up exercises with him, and they will continue each day to do a little more. It’s very likely that Aaron will still be tube fed for a while.

 

His speech is coming along, and his parents have been given some symbol cards to help Aaron explain what he needs. He seems to be saying a little more each day and he has been able to sit in his chair for a little bit longer as the days go by, he even got to go out onto the balcony for some fresh air. They only do about 15 minutes with him as it still does make him very tired. Aaron’s facial muscle weakness is continuing to improve slightly, and they are starting to see hints of his gorgeous smile returning. The doctors were pleased with his progress, but continued to monitor the swelling on the back of his head, as it was getting a little worse.

 

By the end of April Aaron had a bit of a setback. The doctors thought that he had picked up a chest infection. They took his bloods which showed that an infection was present, and he had a chest x-ray. They thought he might have fluid leaking from the wound on his head, so they gave him an extra stitch to avoid him having to go and have it drained. He had a spike in his heart rate and a temperature. He was given 2 sets of antibiotics as he waited for results from the bloods, and thankfully the COVID-19 test came back negative.

 

Which now bring us to May, Aaron had an MRI and lumbar puncture. He also had to have a procedure to drain the fluid from his head as it began leaking again. This was done via the lumbar puncture. The fluid that was taken from the spine showed that this is where the infection had been. The doctors said that it is a form of meningitis that has come from having the surgery.

 

However, the antibiotics he was on was doing the job, and he is going to need these for another 7-10 days. The results on the spinal scan was clear.

 

Aaron will now need 33 treatments of proton beam radiotherapy, Monday to Friday for 6 1/2 weeks. They want to do this as soon as he is better and out of hospital.

 

Sadly, the last week Aaron has been sick quite a bit, and needed help with oxygen. But as a true little star Aaron continued to show us his strength. He was wanting to get out of bed and have a little play which was amazing. But unfortunately, they had an issue with his lumbar drain, it stopped working properly. It was found that there was a blockage in the line and it needed to be flushed. Because there was no fluid draining, his head started to swell again.

 

The doctors wanted Aaron to have another CT scan, but when they got down to the scanning area, Aaron refused to lie on the bed. As you can imagine he has been through quite an ordeal already. Instead, they performed a procedure back in his room where they drained the fluid by syringing it out. The lumbar drain is now working again, but they want to look at removing it this Sunday.

 

He's also going to be having the procedure to fit a central line. He may also be having a stomach feed tube instead of what he has now through the nose.

 

Even though the sample of the spinal fluid they took last week was full of infection, they cannot detect any unusual cells, so they are confident that there are no other cancerous cells. The doctors are also saying that the infection that Aaron has had is now unknown, so are performing more tests on the fluid to try and find out what it is. Whatever the infection was/is the antibiotics appear to be working.

 

Aaron, and his parents Nicola and Lee have been through a terrible time and we want them to know we are all here supporting them through it keeping them in our thoughts.

 

Aaron’s Little Stars family have organised a fundraising idea to show we are thinking of them and how much we care by creating knitted rainbows to share throughout the community to wear as badges, display in our homes or windows, hang in our cars or simply as a keepsake. At the same time we are asking for a donation where all the money will be sent to Aaron and his family.

 

Please help, and join us by making a donation for a rainbow, no matter how small. Every single penny will make a difference. All the funds raised will go straight to Aaron and his family for extra costs they have through travel, and other essentials and anything Aaron may need to cheer him up.

Thank you x x x

(Since last message 8th May)

 

Aaron’s parents have been by each other’s sides supporting each other through this nightmare. Your support messages and thoughts means a lot to them. With decisions to be made that no parent should have to face.

 

Trying to come to the decision wether to enter Aaron into a clinical trail for the 50/50 chance to be offered chemotherapy after radiotherapy. This was to see if it helps reduce the potential risk of relapse. The drugs used are ones that are used in other childhood cancers, and chemotherapy would have been the only option if Aaron had been any younger. They were told that it is best to give the better treatment now. But as you can imagine still a difficult decision as chemotherapy comes with another set of risks on top of those they already need to accept for radiotherapy. Our thoughts and prayers are with them constantly.

 

Aaron continued struggling with the sickness but the dieticians were trying to see how much feed Aaron could tolerate every hour. The procedures that Aaron needed for the central line and possible shunt to drain the fluid in the head was looked at for Tuesday 12th May.

 

11th May - Aaron had his lumbar drain removed, and the swelling on his head was being monitored. The doctors were hoping that they wouldn’t need to fit a shunt. Aaron was still struggling with sickness. The dietician changed his feeding plan again to see if that helped at all. Aaron did also manage to get out and sit on the balcony for a little while.

 

He had a central line fitted, the procedure went well, he also had a peg in his stomach for his feeds.

 

Christies in Manchester wanted to see Aaron Monday 18th May. But that was only if Aaron was discharged by Sunday 17th as he would have to travel to Manchester on the Sunday night. There was little concern with the team at Alder Hey as to wether he was physically fit to do this.

 

The travel would be for the planning of the proton beam radiotherapy treatment, with the expectation that in 3 weeks time Aaron would start the treatment. There is potential that if Aaron lost out on the proton beam, he would have to have photon beam instead. All this depended on how Aaron responded over the next couple of days, and wether it would be safe to transfer him to Manchester.

 

Aaron is also having physio and speech therapy whilst at Alder Hey.

 

Aaron needed the fluid in his head syringing again on 14th May. He had a positive step forward, and actually took a few licks of a yoghurt, and has been saying that he is hungry, which is amazing. They also moved him off isolation.

 

The plan for transfer to Christie’s should have 3 weeks between planning and when radiotherapy starts. The only concern is the swelling from fluid. That needs to be kept down so as not to affect the actual proton treatment as syringing it out can't always be the option. The nurse explained and reassured that if it stays soft it’s ok, but if it goes hard then they would have a problem.

 

Unfortunately Aaron ended up back in theatre Friday 15th at night. There was too much fluid build up in his head, so they decided to reopen the wound and try and repair any holes. They also drained the excess fluid, but put him back on the lumbar drain. Aarons parents were told, travelling to Manchester as originally planned was now highly unlikely.

 

It was another hurdle they had to contend with. This type of issue is common after such major surgery. There is also a chance that this repair might not resolve everything.

 

Aaron continued to struggle with his temperature, and had to have more bloods. He was sent for a CT scan and a x-ray on his chest. The CT scan came back clear, but the chest x-ray showed a shadow which meant there was an infection. The doctor checked on Aaron, and saw that there was fluid leaking from his back where the lumbar drain was fitted. She patched that up, and took a sample of the fluid. That sample came back showing infection, so Aaron was back on the same antibiotics for 7-10 days, as he was before.

 

Another doctor was really pleased with Aaron’s CT scan as it showed that the ventricles in Aaron's head have returned to normal size. If the repair they did in theatre Friday didn’t work to stop the fluid, then it will now be possible to fit a shunt in Aaron's head. They still hope that they dont have to though.

 

Christies have now been able to push back the appointment for Aaron in Manchester.

 

As Aaron then had a bit of a setback, he started with a rash underneath his chin that had broken skin, so he was given cream for that. Then his lumbar drain was leaking from his back, so that needed patching up. The physio and nurses were concerned that he was always lying on his right side and not moving his neck, but understandably he kept telling the physio to go away.

 

By now Aaron’s parents started seeing a glimpse of his beautiful little smile returning and like a true superstar he has been sitting up and playing for a bit too. 

 

Aaron’s parents are happy for his news to be shared and thanked you all for being so unbelievably kind. Nicola (Mum) said “she can’t thank us all enough.”

 

We just want the family to know we send our love and “hugs, kisses and rainbow wishes for Aaron” Thank you for sharing photos of your displayed rainbows and Aaron’s friends holding their rainbows, it’s nice for Aaron’s family to see the support they have and know we are all thinking of them. ⭐️

 

 

Ellen Lloyd-Wilson

(Since last message 22nd May)

 

Since the last update, Aaron and his family have been on a roller coaster of emotions. Aaron continues to be our Little Star giving the best fight he can. ⭐️

 

There has been times that Aaron has got fed up with everything he has to deal with, like the time when he refused to go in the CT scanner and who can blame him. The relaxant the nurses gave him on that day had the opposite effect of what was meant to happen, and he ended up been walking around the ward and playing in the different play areas, which must have been a wonderful sight for his parents, watching their little boy having a play. Aaron has had some good days too. Where he was able to go and play outside on the hospital balcony area. His parents said it was so lovely to see him happy.

 

The following morning they were leaving early in the morning for Christie’s and hoping to get an idea when treatment can start. Tuesday 26th May and Nicola and Lee thought the visit to Christie’s wasn't going to happen!! Their ambulance was booked for 7am but it didn't turn up, so they missed their 9am appointment. However, Christie’s moved some appointments around so they were seen later that day.

 

They met with the Oncologist and a key nurse and went through consent. They also met the General anesthetic team, play specialists and nurses who were all really nice. Aaron coped with the journey really well. He fell asleep for most of the journey. They were told to return on Friday 29th May for bloods and scans, but this time hoping to travel in their own car.

 

Aaron then had a positive few days, getting on really well. He loves being outside playing, and going for little walks, he even managed to go all the way from the ward to the car park and go for a little drive in the car. This meant Nicola and Lee were going to be able to take Aaron to Christies themselves in their own car.

 

The team at Alder Hey were talking about discharging Aaron, which would be fantastic news. They just needed to see how much longer Aaron needed to be on antibiotics for. They were also hoping they would be able to do a day release over the weekend where the family could go home for a few hours. Everything was looking really positive.

 

Then on Friday 29th May they had a really good day at Christie’s. Both CT and MRI scans went really well, and Aaron made an immediate impression on the staff there. They set a start date for treatment which would be 18th June.

 

However, over the weekend, sadly they weren’t able to go home on day release, they stayed at Alder Hey. The infectious diseases team who were deciding which antibiotics Aaron was taking wanted to review his case on Monday to see whether he needed to continue with the medication for a while longer, or whether they can be stopped. They spoke about wanting another sample of the CSF fluid, which would mean another lumbar puncture, and then hopefully an idea as to when they can be discharged.

 

But, on Tuesday 2nd June, they were still in hospital. The Infectious diseases wanted Aaron to finish his course of antibiotics by Sunday 7th.

 

Aaron had his videooscopathy on his swallow, which he unfortunately failed. He just didn't want to attempt to try to eat or drink anything. He also ended up with thrush on his tongue. The therapists didn’t think they could get him in for another assessment that week, and due to COVID restrictions there are no outpatient appointments being carried out for this type of assessment. It could be months before they get the chance again. So Aaron will be with his feeding peg for the foreseeable, with strict instructions not to take any fluid orally.

 

Aaron went on to have some not so good days, he was getting himself worked up whenever anyone went to clean the area around his feeding tube or when his bandages needed changing. So much so that he had been making himself sick. Then his temperature and heart rate started spiking again, and he needed oxygen.

 

His bloods came back fine, and he had a chest x-ray which was also clear, so they thought he was dehydrated, and put him on fluids. Aaron also had another COVID test.

 

Unfortunately, some results showed Aaron got another infection. This time in his central line, so that had to be taken out and replaced the following Monday during his MRI and lumbar puncture. That meant another course of antibiotics.

 

8th June- Aaron had his MRI scan and lumbar puncture. The scan seemed to still be looking good. They were still waiting for the spinal fluid results. The infection that was in Aaron's chest line was a fungal infection, which he was still on antibiotics for. He needed daily bloods to be taken up until Wednesday 10th June, when the infectious diseases team would review if he still needed to be on this course of antibiotics. Oncology were also hoping that the chest line could be refitted either Thursday or Friday ahead of radiotherapy starting on Monday 15th June.

 

After a lot of research and talking, Nicola and Lee decided to enter Aaron into the clinical trial to receive chemotherapy after radiotherapy. Unfortunately, the randomisation of selection didn't go in their favour. This didn’t affect the radiotherapy treatment Aaron was going to be having, or the aftercare. It was just disappointing that they had to rely on a computer to give them a decision on the trial, rather than an actual human being.

 

Aaron had his line refitted on Thursday 11th June, Infectious diseases said that the infection had gone, but Aaron will need to remain on antibiotics. The good news was that the antibiotics could be given through his feeding tube, and they could do this at home, so it looked like they might potentially be discharged if the neurological team agreed. They had everything crossed that they were going to get a discharge.

 

Aaron had had his last IV antibiotic, and the rest could be given through his feeding peg at home. They patiently waited to hear from the oncology to see if they were happy to discharge, but everything was getting put in place to hopefully allow them to go home and spend a couple of nights there before going to Christie’s in Manchester.

 

DISCHARGED!!! 

After 9 1/2 very long, very up and down weeks, Aaron and his Mummy and Daddy finally had that one word they wanted to hear!!

 

Nicola said - “The staff at Alder Hey have been more than outstanding in their care for Aaron. I'm sure they will miss him causing mischief on the ward!! The next step in Aaron's journey begins on Monday with his first treatment of radiotherapy. Thank you to you all for all your kind messages. We cant tell you how much they have meant to us #wearehome”

 

Aaron handled everything really well. They got to spend the whole weekend at home before a very busy week ahead at Christie’s.

 

On Monday 15th at Christie’s, Aaron's first treatment went really well. He did brilliantly when going for the anesthetic and didn't take long to come round after. He was soon playing around again, which was wonderful to hear.

 

On Tuesday, Aaron had his 2nd round of treatment, he was really good going down for the anesthetic again, everyone was so proud of him. Always being a true star, and this continued until Friday. After day 5 of treatment, he then went on to having a well deserved break over the weekend.

 

The following week, Aaron continued to do everyone proud and went down good for the anesthetic. He took a real liking to one of the play specialists there, who has been helping Aaron before he goes in for his treatment with his 'beads of courage'.

 

This is a lovely idea that tracks the journey Aaron and others go through. The child gets a different coloured bead for each treatment or procedure that they go through, and as you can imagine the ‘beads of courage’ keeps growing.

 

21st June Aaron and his Mummy and Daddy had a quiet day. Aaron was suffering a little with side effects from the treatment, he was a little sick. So they restarted the anti sickness medication for him.

 

Over the weekend, they stayed at the appartment in Manchester so they were close by to the hospital. They were hoping to come home at weekends, but Christies wanted them to stay in the appartments just in case, for any reason they needed admitting into hospital.

 

Monday 22nd June, Aaron had more sickness, so was now on regular anti sickness medication. He has also been given more medication to try and get rid of some excess fluid in his stomach. Aaron gets quite tired so lots of cuddles and some quiet days ahead.

 

23rd June - Aaron had a better day. The anti sickness medication seemed to be doing the trick, though his parents know they’ve still got some way to go.

 

Throughout the week Aaron continued with his daily treatment, He went in to the anesthetic room really well, and off to sleep really quickly. His parents wait anxiously for his return each time. Our thoughts are always with them.

 

26th June - Aaron finished day 10 of treatment, and is still doing so well!! Once again Nicola and Lee were looking forward to a well deserved quiet weekend.

 

However, they ended up in A&E on Sunday 28th June. Aaron's chest line started bleeding. They thought it was irritating him and he had been rubbing it. He was fine though, and the blood tests that he had came back clear.

 

Monday 29th June - Aaron was back for day 11 of treatment. Aaron was once again a true superstar throughout the whole week. And by Friday, day 15, Aaron was still coping with the treatment well. They have once again increased the anti sickness medication for over the weekend, as this is when he is being sick.

 

He's now also on a new set of antibiotics as he got an infection around his tube in his tummy. And as he hates having the area cleaned, he had a bit of play therapy at the hospital to try and reassure him. The hospital gave Aaron a doll that has the same tubes as him, and he helps to clean the doll first, then they do the same with Aaron.

 

Unfortunately Aaron got an infection on his scar where a stitch had caused a blister. He also started to lose a little hair around the area that the proton beam goes, but its not too noticeable at the moment.

 

They seem to be getting a lot of bumps along the way, but please continue to send your love, thoughts and prayers their way. Our support and words of encouragement mean a lot to the family. Aaron’s parents said they feel very fortunate to have all our amazing support. Keep sharing your pictures of your knitted rainbows with “hugs, kisses and rainbow wishes” for Aaron.

 

His parents said “He is so strong for such a little boy. We are so proud of him. People's generosity is just so overwhelming.”

 

Aaron and his parents stay in the apartment as much as they can, they are right in the centre of Manchester. Aaron has been enjoying some time playing on an i pad when he’s feeling up to it, we have already shared some suggestions of some good apps that children enjoy, if you have any suggestions please do let us know.

 

With all your support to Aaron’s fundraising “hugs, kisses and rainbow wishes” we have raised nearly £700, with generous donations for the rainbows, lovingly knitted by Sandra, Pauline and Abi. Thank you.

 

Whilst at hospital, Aaron has enjoyed playing a Nintendo switch, with games that helps with his coordination, and building the strength on his left side that the tumour effected. He likes a lego jurassic park game, a sports game and just dance, as he loves showing the nurses his dance moves. With some of the fundraising money we have discussed with Nicola that we will get Aaron his very own Nintendo switch and the above games. So we can purchase this for him with all your help. We are truly grateful. Thank you. Xx

 

We still have some rainbows left if you would like to donate.

 

We have been working with Nicola and Julie from Precious Angelic, on a new fundraising idea. Precious Angelic designs quality homemade jewellery and has recently supported Chester Zoo and Deeside Gymnastics with their fundraising. Julie has designed a personalised rainbow themed bracelet with 20% of each purchase being donated to Aaron’s “hugs, kisses and rainbow wishes” funds. If you would like to purchase a bracelet please visit their Facebook/Instagram/website page. Once again many thanks for your support. We will keep you updated. Xx

 

 

 

Ellen Lloyd-Wilson

⭐️Update 3 - Aaron’s story. ⭐️ (1st August 2020)

 

(Since last message 4th July)

 

Words cannot describe how incredibly proud we are of Aaron and his family. Or the course of July was a living nightmare for them all. At just 4 years old, the experiences that Aaron has had to face have been truly unfair. But as always he has been a true super star through it all and his parents and family are doing amazing. We have been there for them all sending lots of “hugs, kisses and rainbow wishes”. A massive thank you to everyone for their kind words, thoughts, love, prayers and contributions. The knitted rainbows and bracelets have now increased Aaron’s funds to £1000. So much generosity from each and everyone of you and huge thanks and appreciation. ?

 

Aaron has been receiving his therapy in Christie’s in Manchester since Monday 15th June. This had to be done daily with a break over the weekend, which meant that Aaron and his parents stayed in an apartment in Manchester throughout the whole of July to be near to the hospital.

 

Aaron has had plenty of ups and downs throughout all of this. Aaron has had some down days where he was feeling very sick both before and after treatment, and often just went straight to bed after they got back from the hospital. It’s just been so heartbreaking for Nicola and Lee to see him like this.

 

July the 8th came and Aaron had finished all his antibiotics but still had a further 3 weeks to complete his treatment. Both Nicola and Lee were counting down the days until they were all back in their family home.

 

They had lots of quiet days, as Aaron seemed to get quite tired towards the end of the week, so chilled weekends is what was on the cards, especially with Aaron still getting quite tired, and sicky.

 

By week 5, Aaron got to go out after treatment for a walk down Salford Quay. Treatment continued to go as well as hoped. Aaron had a video appointment with speech and language at Wrexham. The therapist did say that he has a definite nasal sound to his speech, so he will need some more therapy focusing on his communication. He had also been asking for yoghurt, and taking half a pot at a time, sometimes even a full pot. With 6 treatments to go the countdown was on.

 

In to week 6, Aaron was still doing really well. He kept the sickness at bay this week, but he still got quite tired. With 3 more treatments to go, Aaron and his parents could look forward to going home. They just couldn’t wait to be back to their home comforts.

 

Monday 27th July, Aaron had his last clinic appointment with the Oncologist, and she was really happy with how Aaron had coped with the treatment. Aaron will have a video or face to face meeting in around 6 weeks time for a check up. He will also need an MRI scan at Alder Hey in 3 months, and his parents were trying to see if Aaron's chest line could be removed as soon as possible, as it won't be needed once treatment has finished.

 

29th July Aaron DID IT. Why ring one bell when you can ring three? And that’s exactly what Aaron did. The smile on Aaron’s face when ringing the end of treatment bell was heartwarming. What a remarkable young man.

 

In total, Aaron has had 33 radiotherapy treatments over 6 1/2 weeks. . We are so incredibly proud of him and his family, our true little star.

 

Today, Aaron has had fun playing with all his toys at home.

 

We are so proud of our very own little superstar superhero on finishing his radiotherapy treatment. Aaron has been simply amazing!!

 

Please continue sending your “hugs, kisses and rainbow wishes” Thank you to everyone for their support. The family can now enjoy some family time at home, knowing we are here to support them.

 

You can continue to support our fundraising, there are some knitted rainbows left at the nursery and Precious Angelic jewellery is still making the support bracelets too. ⭐️⭐️

 

Ellen Lloyd-Wilson

If you would like to make a donation please follow this link: GO FUND ME PAGE

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