Like most families, we planned to have our first child together and was delighted when we were blessed with the arrival of our Eddy. He was a healthy 8lb 6oz and we very much enjoyed the early years watching him develop into a handsome young boy. We as most tried our best to ensure Eddy had a nutritional healthy diet, making most meals using fresh produce. Eddy sure had a good appetite too.
As Eddy developed his own ideas on fun, we soon discovered his passion for the outdoors and sport. He loved anything which involved balls, bikes, cars, and was a bit of a daredevil, tackling all obsticles with confidence.
When Eddy was aged 3 he started to suffer with night sweats. We went to the GP on two occasions and both times they told us this was normal for a young boy whilst adjusting his body temperature when sleeping. If only the GP knew more!
Beginning of August 2012, Eddy developed a limp and started to complain that when he was playing, he sometimes felt a pinching sensation behind his left knee. When we took a close look, his knee did look a little swollen so we thought best to visit the GP to ensure he hasn't fractured anything. On 14th August, Eddy was sent for an x-ray and the very next day we were called into the GP's surgery.
When we received the news that they were certain Eddy had bone cancer; the overwhelming feeling of shock, disbelief, frightened, and many other emotions all hitting us all together. We were so scared of losing our little boy.
Our immediate thoughts were “How could this happen?”. After all, there is no history what-so-ever in our families and Eddy was a healthy young boy. “What have we done wrong?” and “why Eddy?” were also at the forefront of our mind. We spent many hours searching the internet for anything bone cancer related as we like most, had never heard of this. The most shocking thing we found was that the survival rate was quite low and led us into a state of panic, time was critical in his treatment regime.
We weren’t quite sure how to approach this subject with Eddy as he was so young. We tried to explain that his leg was very poorly and we had to have some treatment to try and fix it.
Eddy needed to have a biopsy under GA but were told this could take a few weeks to get an appointment. Obviously, this wasn’t good enough. After many calls, we had an appointment on 21st August for the MRI scan with a follow-on appointment on 22nd for the biopsy. We received news on 28th August that Eddy had Osteosarcoma. Although we were expecting this news, it still came as a shock and the realisation kicked in that this was real.
Eddy was due to start primary school on 5th Sept but knowingly he could only attend one day before his first operation. He was really looking forward to going to school and we were so sad for him knowing he was not be able to attend during his treatment.
On 6th September 2012 Eddy had his central line (Hickman line) fitted. Then on 12th Sept, he had a CT scan which shown Eddy had a small nodule to his lungs. This was really upsetting news as it shown the cancer had already spread. The following day he had a bone scan. On 17th Sept, Eddy started with high dose chemotherapy regime.
We remember vividly our first admission to the oncology ward. We were so scared of what to expect and we pretty much kept ourselves to ourselves. Eddy was initially handling everything quite well but soon got sick from the chemotherapy. How on earth do you explain to your child we are going to hospital and you will feel really poorly because of it with a hope you will get better?
What did surprise us was that Eddy showed tremendous courage despite us knowing he was also very scared. We were desperate to try and find others who were going through this for information and support but it really did feel like we were the only ones on the ward whose child had bone cancer. Mainly Mum (Claudia) stayed overnight with Eddy as only one of us could. Claudia gave up her work and Dad (Jon) continued to work for financial reasons.
At this point in his treatment, Eddy started to lose his hair. It was very sad to see this, never mind experience it from Eddy’s perspective. He put on a brave face and accepted this knowing it will come back once his treatment was over.
On 4th Nov, Eddy developed many ulcers in his mouth and started with nosebleeds. He was very upset and eating became a real problem for the first time. After a visit to the hospital and a blood test, Eddy received a platelets transfusion. However, the next day Eddy was admitted to hospital for 4 days due to a high temperature. During these days, he received regular antibiotics just in case an infection was present. He also needed a blood transfusion the day after too due to his HB being too low.
After two cycles on treatment, Eddy needed to have scans to see if the cancer had progressed or not. On 3rd Dec, Eddy had a MRI scan under GA and then on the 5th, a CT scan under GA. It was awful having to go under GA as this really frightened Eddy, he hated the “magic sleep” as they called it.
After an anxious wait and several days of worry, we received a call from Birmingham Royal Orthopaedic to inform us that Eddy can have the required implant and was scheduled for the 17th Dec. This involved removing all the cancerous bone (lower femur and knee) and replacing with an internal prosthesis. Despite not hearing from our consultant in Nottingham, our only thought was the treatment must have worked so far otherwise Eddy would not be having this operation. But we were desperate to also hear from our own consultant in Nottingham.
Eventually we received a call from our consultant in Nottingham and he dealt a devastating blow – telling us the cancer had progressed to the top of the femur and Eddy should not have been accepted for surgery. We were so confused, angry, sad and desperate to figure out why we had these mixed messages. What was even more confusing is that Eddy's walking did appear to improve over the previous weeks.
We had a meeting with our consultant on 13th Dec to discuss a change of treatment and move onto the second protocol regime. What was really distressing is that there was no third protocol and if this didn’t work, we would Undoubtably lose our precious little boy. It was also very possible due to the spreading of the cancer, there may not be any other option but a full amputation of his leg even if the second protocol works.
Eddy's continued treatment started the same day but not without issues - the revised chemotherapy was administered too quickly but we were told this should not cause any issues.
Knowing this could potentially be Eddy's last Christmas, we tried so hard to make it special but deep down we were broken and found it immensely difficult. We were pretty sure Eddy picked up on our anxiety though. Eddy did enjoy himself and he got his mini-iPad he wanted as a special present from Santa for being such a brave boy.
At this point in time, we were not only filled with desperation and guilt, we also felt very much alone as by now most of ours and Eddy’s friends were keeping their distance, we guess not knowing how to handle the situation. But either way, it was very upsetting and we have never spoken to most since. Eddy would often ask when he would be seeing his friends and it felt like our hearts were being ripped from our chest each time knowing they purposely stay away.
Christmas came to an abrupt end when Eddy was admitted again on 27th Dec for high temperature and was neutropenic. This meant another 48 hours on anti-biotics whist waiting for blood test results for a possible infection. Again, no infection was found.
Treatment continued on 2nd January 2013 with a view on having more scans early Feb 2013. This wasn't without issues again though, from delays to no beds being available and machine malfunctions, it really did feel like a losing battle.
It was also the case that Eddy had to spend his 5th Birthday in hospital.
On 5th Feb, Eddy was again sedated for his CT scan and again on 6th for his MRI scan, immediately followed by continued chemotherapy infusions. The next few days of waiting were unbearable. We were so desperate to see a response. Our thoughts also turned to if we get a response, is there any alternative to a full amputation. We discovered an example where an adult patient had a half femur implant (but not cancer related). We thought as the cancer was within the bone and not the surrounding muscle and tissue, maybe this was possible for Eddy utilising an extendable mechanism to aid his growing without the need to keep replacing the implant. Another option was what they call a rotationplasty, this is where a portion of a limb is removed, while the remaining limb below the involved portion is rotated and reattached but we kind of ruled this out already as it’s a risk cancer could be left behind where not currently detected in the bone.
Finally, on 8th Feb we had the scan result. This time we had a response, albeit minimal, but at least it hadn't progressed and looked like the treatment was working. The nodules to Eddy's lung also had neither progressed. We were then referred back to the Royal Orthopaedic hospital to discuss Eddy’s operation.
We had our appointment on 15th Feb at Birmingham Royal Orthopaedic only to be told by the consultant that they will not operate and believe that the cancer is still spreading/seeding. He also confirmed the only option is for amputation of Eddy’s leg but wouldn’t discuss any options due to their thoughts on progression. He showed us at the top of Eddy's left tibia a small amount of tumour which was believed to be new. The consultants request was that Eddy receives 2 further cycles of chemo and then have further scans prior to considering any surgery as he was convinced the cancer has spread elsewhere.
We were promptly sent on our way as Eddy started again with a high temperature and we had to rush back to Nottingham. Just to add to the already distressing situation, there were no beds on the usual ward and we had to spend that night on a different ward. "what on earth is happening here?" were our thoughts - this surely cannot be! We were so angry too, this is the second time differences of opinions left us devastated. Eddy also started feeling quite poorly and needed two platelets transfusions.
The next day, our consultant came to see us as he obviously got the message on what happened. He then proceeded to tell us he knew the tumour to the top tibia was already present and he doesn't know why the consultant in Birmingham thought it was new. At this point, we started to get a little suspicious as if we were told about this, we certainly would not have forgotten. Also, when going back on the scans – some stopped at his knee so if they knew it was there, it would have been included on the scans.
A full body bone scan was however organised to see if the cancer had spread elsewhere which was carried out on the 19th and showed no cancer was visible in any other bones.
Giving our suspicion something wasn’t quite right, I (Eddy's Dad) also asked to look at the scans. The first thing I did was to compare the first bone scan against the second one where we were told the cancer had progressed to the top of Eddy’s femur. As we looked at the scans, the consultant couldn’t have felt more embarrassed. I could see immediately that the cancer was actually present on the very first scan and had not changed on the second scan. Also, the tibia was the same too. This meant when we were told the first protocol wasn’t working, it was based on false information and the second rejection was also based on false information. The first thing we then asked for was a second opinion and for our consultant to investigate this issue alongside speaking again with the surgeon to clarify this and sort out Eddy’s operation.
In the meantime, Eddy had to continue with chemotherapy. We were however furious because there were obvious major issues and it was our Eddy’s life they were playing with. But still, Eddy managed to smile and cope with the harsh treatment.
Eventually, on 4th March our consultant discussed things with the orthopaedic surgeon at Birmingham and we arrange a meeting on 12th March. This also coincided with our appointment for a second opinion with a specialist consultant at Birmingham Children’s Hospital. In respects of the second opinion, this confirmed our suspicion and in his view, the first protocol was working and he would not have changed it. Secondly, he didn’t think any progression had occurred from the first protocol. You can imagine our shock and with this many other thoughts sprang to mind. If by changing the treatment, has this reduced his chances of getting through this? He didn’t think so but couldn’t say for sure and nobody can prove this either way. One thing was clear though, Eddy needs the operation to remove the cancerous bones and he needed it quickly.
Our meeting then was with the consultant surgeon at Royal Orthopaedic. He was quick to confirm the safest option giving the extent of the tumour would be a full amputation. He did suggest a rotationplasty could be possible but we have a small risk of leaving some cancer cells behind giving the fact it's seeded to other areas of his leg already. We then presented the idea of a full amputation but with a femoral replacement to create a stump and using the "good muscles" to the top of his leg to control the implant to give movement. Our idea behind this was that it would mean Eddy could have a false three quarter bottom leg and potentially still walk with it. The consultant was keen to explore this idea and he would query if the company who makes the implants can do it. The following day we received news it was feasible but would take 3-4 weeks to make it. So in the meantime, some more chemo should be given.
The next chemo didn't go without issues. Eddy tested positive for influenza type B, re-admitted on 25th March with high temperature, and further tests shown Eddy caught the e-coli bug and was admitted to receive antibiotics for 7 days. Alongside this he needed platelets and blood transfusions. What was really upsetting at this time was he must have caught this on the ward and could jeopardise his operation.
Giving Eddy had recovered from the e-coli bug. To avoid any complications in surgery which was scheduled for 10th April, they decided to remove his central line as a precaution. This operation was done on 4th April. However, we received a call on 5th April telling us the prosthesis hasn’t been completed so the operation was delaying until 17th April. But then on the 10th, we received news it still wouldn’t be ready and the operation was delayed again until 24th April. This leaves us in a tricky situation as eddy has been off chemo for too long already so it was decided to re-fit the central line and continue with chemo until final confirmation was received as they didn’t want to risk a further delay and 24th still wasn’t definite. Eddy had the operation to refit the central line on 16th April and continue chemotherapy on 17th.
Literally just after Eddy had the chemotherapy, we had a call telling us the operation was definitely OK for 24th. We still went to Birmingham Royal Orthopaedic in preparation for his operation on the 24th but on the day they cancelled it due to Eddy’s platelets were too low for an operation. This was because he recently had the chemo. This was very frustrating as you could imagine so off back to Nottingham for platelets transfusion and another week to prepare for this big operation.
The design for the prosthesis implant. Eddy was actually the first child to have this done.
Eddy was so brave and the surgery went ahead. Obviously this was a major part of Eddy's treatment and rendered him disabled. A massive price to pay to try and beat this horrible disease. But there was no alternative.
After surgery, Eddy woke only to say “look what they have done to me!”. Our hearts filled with sadness we tried to speak positive words. The only distraction we could offer was his gift of his Gameboy for being such a brave boy.
Over the next few days Eddy recovered, plucking up courage just two days after the operation manoeuvring out of his bed into a wheelchair. A further two days into recovery and he was free of drains, catheter and epidural and able to use a walking frame to take a few steps which was an amazing achievement. He also had movement on his left leg already much to the amazement of the consultant.
Over the course of his stay it was very quiet. We were one of two on the ward. This was quite nice though because it meant we had an element of privacy to deal with what happened. We would also go into the corridor and play with his remote controlled car.
Eddy was discharged on 6th May.
Sadly, on 10th May Eddy was admitted to Nottingham QMC for pain to his leg. Eddy needed Gabapentin to control post-operative phantom pain. The problem we had was this can take 2 weeks to become effective and should have been given prior to the operation. Eddy really suffered over the next few days before the drug kicked in, describing the pain as stabbing and hammering. They tried all sorts of pain relief whilst waiting for the Gabapentin to take effect but nothing would work. We felt so helpless and so sad for him. Why were we getting such bad luck – it was just not fair.
Eddy started back on chemotherapy on 23rd May to hopefully “mop-up” any remaining cancer cells as they term it.
A bit of a rocky road in the last few cycles of treatment. From catching c-diff in hospital, further delays due to no beds, stuck on other wards suffering from horrendous nosebleeds due to deciding not to give platelets when needed, and catching either chicken pox or shingles too and even ward closure due to Aspergillus fungus present in the playroom, eventually the last cycle of chemotherapy!
On 24th after the last cycle, Eddy had a CT scan to his lungs as we still had the issue of those small nodules. This time however Eddy had the scan without any sedation as he hated it that much. He was a brave soldier and did the scan with no issues but it was a bit scary for him even if he didn’t admit it. The results were no change so lung surgery was organised to remove them. This was the last major hurdle to remove all visible cancer.
We also got news that the drug Mifamurtide (Mepact) was accepted for Eddy. This was an immunotherapy based drug which had proven success for some who had Osteosarcoma and is used as a preventative for relapse. We had to really push for this over the previous weeks; literally forcing the consultant to apply despite the fact he was reluctant and positive we would get refused. It was good we had the backing of the consultant in Birmingham Children’s who also wrote to our consultant telling him to apply for it.
The operation to remove the nodules from Eddy’s left lung went ahead and was successful with minimal impact on his lungs. We would have a 1-2 week wait until they tell us if the nodules were the cancer or not.
Eddy never ceases to amaze everyone. After the operation, he was a bit high on the drugs but managed to lift himself up and move around, then on his tummy, then back on his side. The surgeon’s response was “well, that answers a lot of questions then..!”
Three days later, the Chest Drain, pain killer infusion, and hydration was removed and the following day Eddy was discharged.
Eddy referred to his scar as a shark bite as this is kind of what it looks like. Again, such a brave boy giving what he had already experienced. We were so proud of him but also felt so sorry for him – no child should ever have to go through this.
Could this be the end of it? Well, we lived in hope it was.
We had the results back from the biopsy and the results were exactly what we didn't want to hear. It shows all 3 nodules were cancerous with active cells. We got this news late at night and as you could imagine, another night with worry. To what extent they were killed off by the chemo they couldn't tell us which was a little disappointing.
But taking the positive side, the follow-up meeting went well and the consultant was more positive about things as in his mind, all visible cancer is removed with good clearance, showing the cancer was not beyond the nodules themselves (i.e. not in the surrounding tissue). So, this actually means Eddy is classed as “cancer free”.
As much as we wanted to celebrate, we knew all too often this type of cancer returns and our hopes to prevent this is now the new drug Mepact we fought for which he was due to start on 22nd Aug.
On this same day we were at Nottingham City Hospital for the casting of Eddy’s leg now the swelling had reduced somewhat. Eddy was looking forward to getting his new “robot leg” as he called it. But we still didn’t know at this stage if he could operate one giving the fact he had no bone in his leg, just the implant. But the encouraging element was he had good movement and coordination now so the main worry was will the implant stay in place once his “robot leg” is fitted. Only time will tell..
Over the next few days, Eddy's confidence starting to grow and he started to feel much happier, especially when it came to choose his new puppy which we promised him at end of chemo treatment. He even got his first session with his new "robot leg".
After missing a full year at school, Eddy was well enough to go back.
This was one of the happiest days for Eddy as he loved school.
Eddy started complaining about his leg hurting and so we arranged an x-ray to ensure everything was OK and it was. They did a routine chest x-ray too at the same time.
However, the chest x-ray did show a problem. He has a Pneumothorax (abnormal collection of air or gas in the pleural space that separates the lung from the chest wall) on his lungs where he had the operation. Firstly, they thought to leave it but the surgeon didn't want to as if it doesn't go of its own accord, it can affect his lung functions. So the next day Eddy has to go in and have a chest tube fitter for 24 hours to release the air. He really was not happy about this as he hated the chest drains, especially taking them out and always gets so upset which again, as a parent is horrible to see.
The good news was however that there was no sign of cancer formation on the lungs. Eddy continued to have the Mepact infusions on a weekly basis.
Over the last 3 months, Eddy had really got to grips with his walking abilities, he continued with the weekly Mepact infusions, really enjoyed school and playing with his dog Milo.
Eddy even got his five minutes of fame being on Sky News as he was the first child to have the prosthetic implant and it was a great success. However, he was very camera shy and who could blame him. We only did this though to promote Bone Cancer Research Trust charity whom "Team Eddy" had already raised over £10,000 for.
Eddy also got his new trike for Christmas as he really wanted a new bike. Obviously it was a bit of a challenge to learn to ride using his prosthetic leg but he soon cracked it.
It was also a major thing for Eddy in that his hair started to grow back. He was really looking forward to visit the barber that Daddy goes to for his first haircut.
We as parents were so happy but also so anxious because the next scan is due to see if this horrid cancer has returned or not. But we really tried to put this to one side for Eddy.
Considering this time last year, we never even thought we would see this Christmas with Eddy, we felt very blessed and the thought that just maybe, we have beat this horrid disease.
As Eddy was feeling quite well we decided to invite people around and make Eddy's Birthday special for him. After all, he so deserves it. Eddy certainly enjoyed himself and you could just tell he felt like a normal little boy again surrounded by his friends and family.
Eddy had the scheduled chest x-ray. Usually we get the results quick quickly but we were told there were system issues and we had to wait. The only thing going through our minds was “have they found something?” and “is this a delaying tactic, why won’t they tell us?”.
At this point, Eddy had received 32 infusions of Mepact (Mifamurtide). Eddy would get the occasional reaction to this drug, mainly high temperatures but as this was known there was no need to be admitted as his temperature usual dropped back down within a few hours. Mainly, we could see an end to it and thoughts of Eddy’s central line being removed started to come into our minds. This was certainly a major thing for Eddy as he hated that central line.
The next day, we received a call to tell us the scans were clear. A massive relief for us all. We did try to push for a CT scan to his chest as we knew the x-ray will only pick up tumour if it’s of a certain size. But they refused. Eddy continued to attend school and continued with the weekly Mepact infusions.
Over the next few weeks, Eddy had started back at school now and progressing really well, catching up quickly on lost education. He also had his first haircut which he was so looking forward to. His walking had really come on and he could walk very well unaided, even shooting basketball and kicking a football around. Eddy also joined Derby Wheelblazers wheelchair basketball club and took back his DIY hobby helping Dad put things together.
Eddy has his usual x-ray on 3rd March and again, you cannot fight that fear of the cancer returning. Sadly, the next day we received the call that the x-ray shown the cancer had indeed returned to his lungs. Our world was shattered once more, we really thought we had beaten this horrid cancer. A CT scan on the 5th shown there were eight nodules to his lungs. A Bone scan on 13th revealed there was no cancer visible to any other bones.
After a few consultations with various people, it was decided to operate to remove the cancer from his lungs. It was deemed no chemotherapy could destroy this and the only option was surgery. But this was a major operation as it involved both lungs this time. The operation was scheduled for the end of March.
On 27th March, Eddy had the lung surgery which went quite well with all cancer being removed but they actually found 10 nodules which were removed – all with good clearance. Eddy recovered very well again and was soon up and about.
But it wasn’t without issues. On 10th April, Eddy complained about chest pains so we rushed him into hospital. An x-ray revealed another pneumothorax but also highlighted Eddy had a fractured rib resulting from the surgery. Eddy had to stay in hospital for 7 days with a chest drain in for 6 days. Eddy did cope but he really did hate the chest drain and feared the day it was taken out.
During this stay in hospital, we noticed a small lump on his right leg which was slightly bruised. The consultants took a look but dismissed this to an injury and said it will go away and refused an x-ray.
It was decided no further treatment will be given but close monitoring should ensue.
On 1st May, Eddy woke being violently sick and said his head hurts. We settled him down a little and then took him into hospital. they suspected it’s a migraine caused by the chemotherapy he had previously as side effects can come much later too. Eddy returned home, ate some food but then was sick again.
We returned back to the hospital as the pain was still too much fort Eddy and was given paracetamol IV and anti-sickness then sent back home.
The following day, now day 3 – Eddy just appeared to get worst not better. No medicine we had prescribed (oral morphine) would touch the pain and by now Eddy was both frightened and upset. We were so frustrated with the lack of ability to control this supposable migraine so we decided to go to A&E.
When we arrived, they decided to do a CT scan and then came with news that Eddy actually suffered an acute blead to his brain. Giving the time frame, the bleed had clotted by itself but the swelling was quite severe so they prescribed Steroids to reduce the swelling. They told us Eddy was very lucky, not only to survive the bleed but also that he didn’t lose any functionality or mobility giving he extent of the bleed. At this point, they could not tell why the bleed occurred so the next day an MRI scan was arranged. The results were inconclusive. They couldn't be 100% sure because of the blood clot but no obvious sign of metastatic cancer. The signs are though they do think it's cancer related as they cannot think how else it would happen.
It was however very distressing for Eddy giving there was a lot of messing around with delays. The next few days we spent settling Eddy but we couldn’t help but notice the lump to his leg was getting worst. So we insisted on an x-ray which sadly revealed it was cancerous so they arranged to remove this which was only a small operation.
At this point, we were emotionally battered with the real possibility the cancer had spread everywhere. Why didn’t the treatment work for him? It was just so unfair giving what Eddy had already endured.
Eddy had the operation to remove the lump from his right thigh. The operation went quick - about 30 minutes. We now had to wait 2 weeks for the pathology results.
Eddy started with gastro bleeding which was thought to be a side effect of the steroids but still needed a blood transfusion. Basically, he was passing black stools. On the 17th, Eddy was suffering due to abdominal pain. The consultant assured us it was to do with the steroids and Eddy had his last dose so it should improve.
However, two days after Eddy went to the toilet only to suffer immediately after with severe pain and because he continued to lose blood, he needed yet another blood transfusion. Eddy also received another medication to help with the stomach spasms alongside a higher dose of oral morphine. Still not getting on top of it though. He had an x-ray but couldn't see anything obvious but they also organised further investigation to be carried out by the gastro team. After a few days of messing around due to miss-communications between the teams, on the 23rd Eddy had an Endoscopy via the mouth, bottom, and in through his tummy. Result were that they found nothing. They suspect the bleed is within the small intestine - they cannot see this via an Endoscopy as it's too difficult to get too.
On 25th, Eddy had a couple of days feeling relatively OK and they considered to send him home. But Eddy was then sick immediate followed by further abdominal pain. He then needed further fluids and medication with further investigations to organise.
Eddy became disoriented and complained of headaches in the same area as before when he had the brain haemorrhage. He thought he was home and couldn't remember his age. Our thoughts immediately were that it was definitely the cancer that was causing this but we kept being told it was unlikely. And this on top of his abdominal pains were getting too much for Eddy. He hadn’t eaten or drank without being sick in days and now for the first time required IV supplements called TPN. We feared we may not be getting out of hospital with our Eddy.
A CT and then MRI scan shown Eddy did have a tumour to his brain. Initially, we were told nothing could be done for Eddy. As you could imagine, all our fears are now reality. But we didn’t want to accept this. We then arranged to see the Neurosurgeon and with that, the feedback turned to they could possibly remove the tumour with minimal impact on Eddy’s ability – maybe could affect his motor skills on his left side.
Meanwhile, on 28th Eddy’s abdominal pain increased and he suddenly started passing fresh blood nearly every three hours. Eddy was put on several medications to try and stop the bleeding alongside blood transfusions. Eddy was very scared as to what was happening to him and we tried to reassure him we will sort it out. He had an emergency CT scan which revealed an abnormality to Eddy's intestine. The problem was an intussusception (An intussusception is when a part of the intestine has invaginated into another section of intestine, similar to the way in which the parts of a collapsible telescope slide into one another). The overnight bleeding meant Eddy actually lost nearly one litre of blood causing panic amongst all doctors and consultants. As you can imagine, whilst they were panicking we were in a sense of disbelief that this is reality.
Eddy was rushed for emergency surgery mid-morning and they had to remove the section of intestine where the problem was. Obviously this was major surgery yet again for Eddy. There was a small nodule in that area sitting on the intestine and by now we could only assume it was the cancer.
Eddy was recovering whilst we were looking at options in relation to the brain tumour. On the 29th, We had a meeting with the Neurosurgeon. He told us there is 1 in 10 chance he will possibly weaken some abilities on his left side such as arm or face but what choice did we have? The operation was scheduled for Monday, 2nd June.
Eddy had the operation to remove the tumour and it went OK. He didn’t lose any motor skills nor anything else that we can tell. The surgeon was very pleased with the operation and Eddy recovered well. Amazingly, Eddy said he was hungry for Pizza so a quick trip to the takeaway meant one hour after the operation he was sitting up, eating pizza and drinking juice. Amazing to say he just undergone major brain surgery and bowel surgery a few days prior.
We even got out of hospital and spent some time during the day at Billy’s House. We still had to be monitored closely so couldn’t go home. But Eddy was so relieved to be out of the hospital and he was feeling much better. This photo is of Eddy eating his pizza at Billy’s house.
On the 4th, Eddy had another CT scan. We then spoke to the Neurosurgeon who took time to show Eddy the scans. Everything looked good and most swelling had gone. But with all good news, some bad news came our way. The nodule discovered on the section of bowel removed was confirmed as being cancerous.
Giving the fact the cancer has spread to his brain, bowel, right leg, and obviously the lungs prior. They were keen to start a new chemo regime a.s.a.p. Well, the new consultant we had did. We insisted on switching consultants as we had lost faith in the current one who had clearly given up on Eddy. We were told this will no longer be curative but obviously we were keen to try and still cure Eddy and spent many nights researching different trials.
Eddy was eventually discharged on the 6th after a CT scan to his chest. Eddy also started to complain about pain to his right arm and sadly we found a small lump to the top of his arm. We also received news another nodule was found to his lungs. Time really wasn't on our side so we had to do something and fast.
It was decided to start Eddy on a new combination of drugs which could be given on daycare so Eddy didn't have to stay over at hospital any more as he now really hated to be there. It was also decided to give Radiotheraphy to Eddy's head to try and prevent the brain tumour reforming.
Over the next few days, Eddy's treatment continued whilst trying to find a good level of pain control for his arm as the pain had got worst for him.
Despite all that had just happened, Eddy did start to feel better and he started to smile and laugh again.
Eddy was so unhappy and who would blame him. He had wear a mask which was pinned down to the machine bed. We weren’t allowed in the same room as Eddy so Mum spoke via a speaker to try and reassure him. It was very scary for Eddy. But, he was so brave and managed to do it.
After the first session, Eddy developed headaches, was sick and his temperature rose to 38.6 !! We had to go back to the hospital. His temperature eventually went back down and was given anti-sickness IV on day care. Eddy then had a further 4 days of Radiotherapy but no further reactions happened.
Eddy was relieved after the final session. He kept saying he could smell burning which was really not nice for him. Yet another huge hurdle Eddy endured and still managed a smile. He totally amazes everyone how he can handle what is happening.
Continued treatment and monitoring saw Eddy’s condition remain stable but Eddy did start losing his hair again which on this occasion, did upset him.
We spent a lot of time researching possible solutions for Eddy whist his treatment continues. There was evidence that Eddy had a tumour to his right shoulder area but the biggest blow was that it was slowly progressing. The tumours to his lungs were relatively stable and a third operation was discussed after seeking more than one opinion. Eddy also had an MRI scan to his head and this shown no evidence of cancer returning.
We also took time so Eddy could enjoy some trips out and partake is some of his favourite hobbies.
Beginning of September, it was decided to try different combination of drugs to see if that would stop progression completelly. Eddy also suffered worst side affects too alongside the requirement for further platelets and blood transfusions. Only time will tell if this new treatment is working.
CT scan went fine, Eddy was super-brave as usual and did it without issues. Scanxiety starts to set in now.. such a crucial point in treatment with no further options readily available.
Sadly, progression was still evidend to the lungs but strangly not to his shoulder. We were unsure if this was due to a four week delay from starting this new chemo regime. But there is also an indication of chemo having some effect (they think!). As to the timing is unknown. They also think one of the nodules to the lungs are too close to the main vessel so an operation would be very risky. However, this hasn't been confirmed by the surgeon.
A few days later, after consultation with the surgeon, it was decided they will operate to Eddy's lungs to remove the immediate threat whilst we continue to explore new treatment options. We had found a trial in Italy which was looking promising and after discussing this with the consultant, he said he will contact them.
Despite planning, the lung surgery was cancelled due to lack of beds in HDU. This obviously raised great concerns as we knew the cancer was progressing on chemotherapy and now Eddy was off chemo in preperation for this operation. A weeks delay in our mind was crucial.
Meanwhile, Eddy was looking forward to getting his new blade leg as this could fulfil his ambition to run again. He received this on 20th and soon got to grips with it. But he wasn't allowed to run without proper training.
They have only gone and cancelled his operation again due to no beds on HDU. Fuming is an understatement and all sort of implications because of this, be it further progression, spreading, can't have chemo and so on... Someone up there is really against us and we don't know why. The only person happy about this was Eddy but obviously he didn't understand the implications.
It was uncertain as to the actual day of the operation and we had to take each day as it comes with the hopes it will be sooner rather than later.
Eddy had the operation but it took quite some time. Just as we thought things must be going OK as we heard nothing for a good couple of hours into the operation, the surgeon walks in with a worried face, asking us to go somewhere private. He proceeded to tell us the cancer had progressed to an extent that he could not remove all of it. Doubling in size and wrapping itself around main vessels. This is our worst nightmare come true. Not only because of the obvious, but all these delays were certainly to blame for this situation. We even asked for a scan just before the operation to double check but that was deemed not necessary. If they had done the scan, then we would not have put Eddy through this major surgery. Eddy now needed to recover from the operation before we can continue with any treatment.
Recovery was a bit mixed to start with but when they eventually got on top of his pain Eddy perked up. Two days later the chest drain was removed and the nerf guns came out to seek revenge on the consultants. Eddy was a great aim and they all certainly knew that and steered clear.
Eddy was discharged on 11th Dec and was certainly happier when home. Eddy was not eating much but loving chicken skin with a bit of mash alongside a few mint matchsticks.
We thought yet again Eddy was suffering from Pneumothorax but after a scan, the pain was confirmed to be a partial collapse of his lung caused by the tumour. Eddy was also suffering from anxiety pains at the thought of yet another chest drain. We spent most of the day on the ward but Eddy was panicking every time someone came to see him, literally uncontrollable. This was very upsetting to see. It was decided the best things was to get Eddy home a.s.a.p. with a pain control plan put in place.
Eddy also started his oral chemo soon after getting home to try and control the cancer which we had been planned after the lung surgery. If it works, Eddy's lung could become fully active again. Physically, Eddy is OK so it's hard to comprehend sometimes. Plans were also put in place so Eddy can have as much treatment as possible at home rather than going to the hospital as they saw first-hand how distressing this now is for Eddy.
However, Eddy soon picked up once home and he astonished all involved. Over the next few days he even managed to pay a visit to Derby County Football Club, Robbie Savage came to see Eddy and a special VIP visit to see Santa at Nuthall Christmas Lights. Where Eddy found the strength was beyond belief and he was looking forward to opening his Christmas presents.
Our thoughts were very much about searching for any better treatment options for Eddy and ensuring Eddy is comfortable.
“Is this really the last Christmas we will have with Eddy?” thought was pretty much pinned to our foreheads but we tried so hard to make it a happy occasion for Eddy. He did enjoy himself but it was very tiring for him too. He was taking daily chemotherapy and his appetite wasn’t great and eating became a struggle. Eddy did try so hard because he never wanted the feeding tube and to date never had one.
Eddy still managed to find the strength to go outside when it snowed to throw snowballs at Dad. It was so nice to see and just shown us how determined Eddy was and he still had lots of fight left in him.
Eddy had a reasonably good day and it helped that his friend and some family came to see him. He still struggles with eating and has become more weak but he still maanged to find the strength to play some basketball.
A rough day for Eddy today. Started with headaches and sickness at 7am! Not clear as to why but you can't help but think the worst. We also know the treatment can have these side effects too so looking to see how we can pinpoint the cause by juggling the drugs around. The nurse brought Eddy's steroids and next chemo around midday. We asked for a low dose of steroids to give Eddy a boost for his eating and this has obviously helped with the headaches as he's perked up a little. As the day progressed, he was still not feeling great but certainly much better than the morning hours.
Eddy started again suffering with headaches and the steroids helped again in this area. It was now decided to do a CT scan. The consultant came to our house a week ago to see Eddy as he was conscious about Eddy's last reaction to being at hospital. He said that he was very surprised to see Eddy reasonably well considering and admitted he thought we would lose Eddy over the Christmas period. We even had to make plans prior to Christmas to cover this situation which was not nice at all.
The CT showed exactly what we feared - Eddy had disease to his brain again. The x-ray he also had revealed it was also in several places to his right leg (knee to ankle). The only bit of positive news to come from this was his lungs had actually improved which was amazing. So what do we draw from this? the chemo is having some effect, but we also know that this chemo is not too good at getting to the brain.
With this news - we had a meeting with the neurosurgeon who operated on Eddy's brain last time. We went over many options and which course of action is best for Eddy. Obvious thought was to remove the tumour but this time, being as there are more than one tumour in his head, it was deemed very high risk of Eddy losing motor skills to his left side, including his face. There was also the fact because they have operated and had radiotherapy prior in the same area, the operation would be very tricky with high risk of postoperative complications with possible lengthy recovery times. This would mean no chemo - and we know this is in itself too risky and leaves the lung nodules to progress.
As we currently have control of the pain, we didn't want to dive into an operation giving these risks. But it was decided if the pain gets out of control, then he would be left with no choice but to operate. But this would be a different operation - not to remove the tumours but just to remove some of them for pain relief.
Another option is to add a further drug into the mix to try and target the brain tumour alongside the others. Maybe further radiotherapy too. This was deemed the best option in the short term with hopes we can control the tumour. We will also have a more detailed MRI scan so we can re-evaluate the risks alongside getting a better picture of the difference between tumour and scar-tissue, thus possibly contributing to a reduced risk of operating.
Eddy himself is not too bad considering. The steroids are messing with his emotions, one minute up and the next very down. Eating has improved giving the steroids but still finding it quite hard to find things he likes. We find it difficult at the moment to motivate him to do things too. We are gradually reducing the steroids to find a minimum level which hopefully will help.
The coming weeks are going to be very challenging, especially with this ticking bomb in his head. But we hold on to the hope that we can get this horrid cancer under control. Chances are very slim, but Eddy fighting spirit and ability to battle on regardless is truly astonishing. Eddy even found the strength and wanted to go watch Derby County play football. He didn't manage to stay the full match as he got too tired.
Eddy has put some weight back on - mainly down to his diet of onion rings and Paratha bread. So, daily trips to McDonalds and the Indian to stockpile each day. Tried other onion rings but it has to be genuine McD's !! He is very much up and down throughout each day but today went with Mum to buy his quad-copter with his Christmas/Birthday money from Red5 in Derby. So he was quite happy and also eating ice cream of all things in this weather!
Surgeon re-assessed Eddy's brain from the MRI scan and he still deems it high risk to operate. So for now, we are dependent on drugs; hoping we can control the tumours. They could not see a difference between the CT and MRI but it was quite a short period of time between.
Some progress on the drugs side (in a sense). Our consultant is keen to try some other drugs which I suggested. If his tumours have the genetic build-up required for the PI3K/mTOR pathway treatment they just might work. After he liaised with the team in Italy, he will now officially apply for them. This is certainly not a cure seeking exercise (but would be good if that was to happen!); but a kinder way to treat and halt progression. There is only so much chemo Eddy can have and we are reaching that limit pretty soon if not already. However, because these drugs are non-standard protocol for his condition (and costly), they need to be approved. If he fails to get NHS funding, then some fundraising will be called for.
So currently Eddy is still high risk. We are on top of the pain which in turn means we have a happier Eddy. We now pray for no further progression. Certainly fingers crossed on the new drugs - not only in relation to getting them but also that they actually do something for Eddy. It could be the case these do nothing but we have to explore all avenues right now. And we cherish each smile and laugh we get as these are getting somewhat rare.
Eddy had an x-ray and the results were in during the long stay and showed all is pretty static to lungs, shoulder etc. But as most know, a simple x-ray isn't the best but at least we seem to have an element of control over things at the moment by slowing progression right down. No scan was done to his head though.
Eddy himself is still very much up and down, but still managing trips to Morley Hayes for pasta/onion rings/ice cream. He still gets quite a bit of pain and struggles with this on a daily basis, requiring oral morphine alongside his patches. Pain is mainly to his arm where the tumour sits so we organised some radiotherapy to his arm as this could relieve the pain he is experiencing.
Eddy has now started the new drugs and seems to be tolerating it. This has never been given to children apparently! However, one of the possible side effects is tumour pain. So, being as things look stable it is quite possible the drug is causing his pain. We simply don't know. Sample is yet to be sent to Italy so he will continue until results are back.
Eddy felt well enough to join his school friends on a school trip to the zoo. He really enjoyed himself.
Over the next few days, Eddy went to the cinema too and we made several visits to Morley hayes for his spaghetti, onion rings and the ice cream.
He also attended Notts City hospital for a high dose of radiotherapy to his arm to try and help with the pain caused by the tumour in his muscle but it didn't seem to work too well.
We battle on, Eddy has some good days and some bad days. We are having to constantly tweak medication and suppliments though. But Eddy continues his fight and we are all right behind him.
We had to take Eddy to hospital for IV steroids as the pain was too much for him to take oral medication. Sadly, it took several hours of messing around due to lack of staff availability before he got the steroids and all that time he was in severe pain. Eddy had a scan and although most tumours were controlled by his new treatment, the ones to his head were not. It was deemed a pure miracle he could do the things he did giving the extent of the tumour/cyst which took up most of the right side of his brain the scan revealed.
During the course over the weekend we eventually got the pain under control. With lots of moaning all weekend to get back home, it was organised to bring Eddy back by ambulance on Monday 16th March. But sadly with the prediction he would only have a few days left. He had several syringe drivers attached too for pain control.
It was now the case there were no further treatment options to be given as his body couldn't take any more. It felt like our hearts were literally ripped from our body as we really did hope the new treatment was working for the brain as well as his lungs.
Eddy being Eddy; as soon as he got home and settled in our bed, he amazingly picked up, asking to play on his iPad and eat fish fingers. This continued both day a night to satisfy his appetite (steroids side effect) - eating fish fingers followed by Müller rice pudding then a bit of chocolate swished down with his favourite tipple of lager shandy. I think he ate over 40 fish fingers in the space of the next two days!! Certainly keeping us on our toes. Eddy just kept going and the consultant came to our house on two occasions as he couldn't believe it.
Eddy’s cough gradually worsened and slowly turned into having breathing difficulties and was now oxygen dependant. But Eddy was still munching away of course and checking his farm [hay day] on the iPad.
We had many issues and difficulties but we tried to stay strong for Eddy. You simply cannot find any words to explain.
Sadly, the night of the 28th Eddy became quite distressed with obvious breathing difficulties despite the oxygen. We had to resort to high dose medication to gently sedate him.
We knew we had to let him go but we still lived in hope a miracle would happen and our precious boy would suddenly get better.
But our prayers were not answered and Eddy passed away at 5am, 29th April 2015.
Love you to the moon and back Eddy - shine bright for us our little super star xx
There are no words that can describe the feeling of losing your child and our lives without Eddy will never be the same again - we have changed and most cannot understand that. We miss Eddy so much it physically hurts and not one second passes without him in our thoughts and our hearts.
Edward Wolfgang Parry - 4th Jan 2008 to 29th April 2015