This is Harry’s Story so far, written by his mummy Nina

The signs

Our world fell apart in Summer 2014. Harry, my beautiful blue eyed boy, was just 6, and had been suffering with nosebleeds on and off for quite a long time and so when he had a series of bad ones it wasn’t such a shock. I, of course, took Harry to the doctors and they gave him antibiotics thinking it might be an infection. Looking back, Harry also told me his tummy hurt or his legs were tired at various times but I put it down to tiredness and possibly growing pains.

Just after we moved into our new home, and their Daddy into his, I took Harry and his big brother Oscar (then aged 7) to Rock, Cornwall for a holiday and to attend a good friend’s son’s christening and birthday celebrations. It was there that I knew something wasn’t right. Harry had yet more nosebleeds, one or two lasting for up to an hour and I had to carry him everywhere due to his tiredness and because ‘his legs’ or ‘tummy hurt.’  If I’m honest I thought that he was tired from the upheaval of moving house and possibly slightly anaemic from the nosebleeds. If only this were the case.

There is one day, with hindsight, that stands out for me on the holiday. It was a day when Oscar, Harry and I went for a 21-mile bike ride with our friends, which, although Harry enjoyed, we had to stop on many occasions because he was tired and also cold. This was so unlike my bubbly, smiley, and bouncy, energetic little boy. Now we know why….

As soon as we got home, I took Harry back to the doctors and he asked us to return for some blood tests, which we did, actually on Oscar’s birthday before school, on 10th September 2014. The moment I noticed I had three missed calls and an answer phone message on my mobile from Harry’s doctor my world fell apart, although, at the time, I had no idea what was to come. I was told that Harry was “severely anaemic” which led me to break down at my desk in complete fear. I needed to take Harry immediately for further tests so we stopped at their daddy’s so I could talk to Russ and see Oscar for a few minutes on his birthday and then went off to the Paediatric Assessment Unit at Milton Keynes Hospital.

The diagnosis roller coaster

Harry had a cannula put in his hand that night and lots of blood tests followed. We were told he had a condition called ‘pancytopenia’ (when all blood counts are low) and we were eventually given a room for the night. We stayed there for a few days, desperate for answers. Harry had multiple examinations, scans and tests. At that time we were told that ‘pancytopenia’ could be caused by a virus that knocked Harry for six, possibly Aplastic Anaemia (to do with his auto immune system) or it could be leukaemia.

We were then referred to Kamran’s Ward at The John Radcliffe Children’s Hospital for further investigations and tests, including bone marrow tests which involved a general anaesthetic. We were all terrified and although I didn’t believe it was leukaemia (from something that Harry’s doctor had said to me) we continued to be hopeful.

I remember the morning so clearly when a doctor advised me that leukaemia had been ruled out.  I was completely elated based upon what I thought the three initial possibilities were. Later on I realised that I had probably held onto the positives and hadn’t registered the negatives, as I recall being told that there was something else that they were investigating…another possible ‘malignancy.’

Russ was with Harry and I when we were told the next day (17th September,) exactly one week from his first blood test, that he had been diagnosed with the most dreaded of all children’s cancers, the rare and aggressive cancer that is known as Neuroblastoma. Not only that, it was stage 4, high risk and had spread all over his body (it was metastatic.)

We were completely and utterly devastated, and more than anything, terrified. I have NEVER felt pain like it. I also found myself to be incredibly angry and frustrated, why was this happening to us? Why Harry? Why my son?

Harry’s primary tumour was in his abdomen and was about 10 cm in length.  It was also in is lymph nodes and bone marrow too. Harry’s MIBG scan (which shows a skeletal image of the cells taken up with Neuroblastoma) was terrifying; it appeared ALL over his body, even in his skull. I was shown this first image at a later date, during his reassessments and I don’t know whether it was deliberately not volunteered at diagnosis (because of how frightening it was) or not. Either way I’m glad I didn’t see it at the time.

Kamran’s Ward has been very good throughout, we had (and still have) faith in Harry’s consultant, and he and all the doctors and nurses were incredibly supportive and welcoming to Harry and us. Unlike us, they obviously knew they would be seeing a lot more of us!

Throughout this, Oscar – Harry’s big brother, has been amazing. He was pulled from pillar to post and suddenly had family returning from holidays to support us, whilst friends surrounded us.  Oscar and Harry’s bigger brother Lawrence and big sister Eleanor, also came back from Australia. It must have been so frightening for him too. Russ and I decided not to hide anything from the boys. Once we knew what was happening, we sat them down together to tell them as much as we thought they would understand and have continued to do so throughout.

I wouldn’t have got through those first few weeks and subsequent months without my INCREDIBLE family and friends. That support continues, and I am so grateful to everyone.

Chemotherapy

The induction phase of Harry’s treatment -the Siopen trial- began and little did we know just how intense it was going to be. The chemotherapy at Kamran’s ward and being away from Oscar and home for days on end wasn’t the half of it. Harry also had to endure weekly dressing changes, regular bloods taken and worst of all, daily injections called GCSF to boost his white blood cells for 7-10 days in between chemo. This was a trauma every day for him (and me) and although occasionally he coped with it, he continued to fight against it for a very long time.  We literally had to hold him down – it was just horrendous. The Community Nurses from Milton Keynes did their best to help in every way, but Harry became very angry towards me for a while and however much we explained everything to him (he understood most of what was happening) he just took it out on me. This was incredibly hard to handle but as a result we have become much closer for it.

I hadn’t appreciated that the treatment was going to be quite as intense as it was. In between the cycles of chemotherapy Harry had to have multiple blood and platelet transfusions, and he got infections in between almost all of his cycles of chemo, which resulted in frequent visits and stays in Milton Keynes Hospital. He also encountered sickness, sore mouth and a major loss of appetite. As a parent, this was very upsetting to endure, as his food was the one thing that I felt that I could try and control. There were times when Harry lost so much weight that he had to have a Nasal Gastric (NG) tube inserted for feeding. He had to have this put in three times as it can come out when he vomits. This was a huge thing for Harry (and us all) to deal with.

It was also very difficult to relax at any time, day or night, because we had to monitor Harry’s temperature at all times for risk of infection, which if not treated immediately was dangerous. The moment it went above 38 degrees c we had to take him to hospital where they would administer antibiotics intravenously. I remember several nights when I would set my alarm every two hours, or less, to check him. Luckily for me, Harry often climbs into my bed at some stage through the night or early morning, which makes it easier in some ways. I simply adore my cuddly little boy and it completely breaks my heart seeing him go through this nightmare.

Oscar

Oscar, my other adorable, intelligent and sensitive son, stepped up during all of this and was a complete rock for me. Oscar, being a little older than Harry, understands things better, but we have to remember that he is still a child. There have been many times when Oscar would try and distract Harry, make him laugh, hug Harry or me and run to get sick bowls and tissues for me. He is amazing!

Despite living this nightmare as well, I am overwhelmed by how supportive Oscar is especially when I’m upset as to how his life has been turned upside down too; Oscar will tell me that he understands and that it isn’t my fault that Harry is poorly. Bless him, I couldn’t be prouder of my big boy.

It was, I know, incredibly hard for Oscar to have his mummy and little brother away all the time and to see his mummy have to pay so much attention to Harry, when he actually needs it too. Oscar loves his little brother so much and misses him a lot too; this all just seems so unfair. We are very lucky that his Nanna could be here so much during these times and that he has good friends he could stay with when he wasn’t with his daddy. Oscar also got angry at times and I don’t think he always recognised why he felt like that. He and Harry were given a boxing kit, which was fantastic for Oscar to get rid of his frustrations on as well as exercise! It then became a fun game for both boys and me to do together in the evenings.

Harry

For Harry, I think the build up towards Halloween, followed by Christmas, kept him going. He simply loves it all!  So when Harry went downhill just before Halloween and ended up in hospital with an infection on the day of the Halloween party he had been so busy planning he was so upset. But undeterred, we arranged another special Halloween party with his friends the following week!

At Christmas, Harry was (for a very weak and poorly boy at the time) the most excited little boy ever! He wore his Christmas hat every day for the whole of December and counted down the days! I tried very hard to remain strong in front of both the boys and kept as much normality as possible including Harry’s links with school and play dates with good friends often at the hospital or at home.

Throughout everything, Harry has continued to smile his gorgeous smile, his blue eyes have always had a twinkle in them and his two favourite teddies (Bengy and Herbert) have been almost glued to him since September last year. He is the most cuddly, bouncy, cheeky boy and to see him without his bounce has been so hard.

We have given Harry incentives (some might call them bribes) for overcoming his GCSF injections, taking horrible medicines, constant examinations, continuous rounds of tests, reassessments and for the long journeys and the hospital stays. His love of his cuddly toys, Skylanders, Minecraft and now Star Wars has meant that we have a whole host of rewards that he can focus on throughout. 

Overall, Harry endured the induction phase pretty well despite spending most of his time in hospital, missing his friends and an awful lot of school. He put up with more than anyone should, let alone a 6 year old child, and whilst we were all getting used to the intensity of the treatment we had to look forward and focus on what was to come next.

Reassessments

Harry’s mid-induction assessments in November 2014 all showed that he was responding well to the chemotherapy and the bone marrow aspirate was clear of Neuroblastoma cells. We were thrilled by this news and so encouraged that, although he had a long journey ahead, it was all going to plan.

Harry had his full reassessments in January after a lovely Christmas at home, followed by his stem cell harvest. We were expecting him to have surgery to remove the tumours at the beginning of February, followed by high dose chemotherapy. This was, and still is, the most frightening part of Harry’s treatment but Harry was ready to get the “lump out of his tummy”.

All of Harry’s tests and scans showed fantastic response to the chemotherapy and his tumour had, according to the radiologist, “reduced significantly” (about half the size that it was) and appeared “better than expected.” The bone marrow aspirate was clear and we were just waiting for the bone marrow trephine result, which takes a bit longer.

The result came on the Friday before Harry was due to have his surgery. I received a call from his consultant (because we weren’t due to go to Oxford again) and was told Harry would have to go through two more cycles of chemotherapy -called TVD- in order to try and clear the last of the ‘bad cells,’ as we call them, before they would proceed with surgery. I was told that about 70% of children usually get to the surgery stage without the need for this additional chemo, so felt yet again that we were so, so unlucky.

I was alone in my kitchen and utterly devastated again. All the barriers I had put up to protect myself came tumbling down in an instant. Harry was amazing and accepted the news as he does with most things. He is a truly remarkable little boy, a true superhero as many call him and my precious son.

More chemotherapy & reassessments

Harry tolerated the TVD cycles well, it didn’t affect his appetite too much this time so thankfully there was no need for the feeding tube again. He preferred, instead, to drink the revolting supplement drinks, (in the disguise of hot chocolate!) and this, together with him generally feeling a little better, helped him build his weight up again.

I had every expectation that this TVD would clear the last little bit of the disease ready for surgery, in fact it didn’t really occur to me that it wouldn’t. So when he had his reassessments… yet more tests, bone marrow ops and scans and the results finally came, I was COMPLETELY floored and yet again I was hit by broken expectations.

We were on our way home to Shrewsbury and thank goodness my sister was driving, as without a doubt, this was the most painful experience since his diagnosis, probably worse. I knew in an instant that it was bad news. I was told that Harry was being taken off the Siopen trial (the treatment plan/protocol that he was on) and that his disease is refractory. This meant that he hadn’t responded completely to the chemotherapy and that there were still Neuroblastoma cells in his bone marrow. Harry’s consultant told me that if the bone marrow wasn’t completely clear then they are unable to operate. I just wanted this damn thing out of his body.

Beacon trial

So then, after more research, information gathering, talking to experts, charities, nurses, consultants, friends and family, Harry was enrolled on the BEACON trial, another form of treatment, at the Royal Marsden Hospital in Sutton, which we absolutely NEEDED to work. The BEACON trial is looking at Bevacizumab, Temazolomide and Irinotecan for Neuroblastoma that isn’t responding to treatment (refractory) or has relapsed. The arm of the trial that Harry was randomly selected for was for Temazolomide only. This concerned me deeply because by giving him only one of three possible drugs, it felt like we weren’t giving him the best possible chance of clearing the Neuroblastoma from the bone marrow. I knew, however that there was no evidence yet to prove that by adding a combination of one or two of the other drugs was actually beneficial, this being the whole point of the BEACON trial.

Harry endured yet more chemotherapy in tablet form this time, which for him was worse because it tasted so awful. I had to mix five capsules worth of Temazolomide into apple puree to enable him to take it. He was often sick and it became a huge battle for the five days of each cycle he had and was very distressing. In hindsight this was a blessing for Harry as he suffered less than he might have done on another arm of the trial. He coped incredibly well and the side effects from this form of chemotherapy were minimal compared to what he had so sadly become used to.

After multiple journeys up and down and around the M1 and M25, four cycles of Temazolomide, and two full rounds of reassesments including hospital stays…IT FINALLY WORKED, his bone marrow was clear at last of Neuroblastoma cells, both in the aspirate and trephine! I burst into tears (again!) although this time happy tears of relief that Harry was no longer refractory. This amazing news was soon followed by fear of what was to come.. surgery, high dose chemotherapy and stem cell rescue which are the most dangerous parts of his treatment plan.

A very good friend told me recently, that with cancer patients it is the ugly twists and turns of the journey that cause the most pain and upset. Unfortunately this is all part of the long journey Harry and the entire family is on….

I will NEVER allow myself to lose hope, Harry is a strong, very stubborn little boy, and he/we will fight this.

Surgery: Friday 21st August

Prior to even getting to the stage of when Harry was about to have major surgery, we had been told that due to the nature of neuroblastoma tumours, it is likely that surgery could last several hours, and that he could be cut from one side of his stomach to the other. This is because the tumour is not usually a solid ball, but is spread out much more and usually around vital organs in the abdomen. In Harry’s case, his main tumour had thankfully been reduced in size from all the chemotherapy that he had had, by approximately half, but appeared to be sitting on top of his left kidney, wrapped around the main vessels in and out of the spleen, with the pancreas above. So apart from the usual risk that goes with major surgery, we were advised that they might have to sacrifice Harry’s spleen, and possibly the tail of his pancreas. Miss Lakoo, Harry’s surgeon at The John Radcliffe, wouldn’t know how long or how intricate the operation would be until Harry was under her care.

The wait for Harry’s surgery was pretty terrifying, but we were also very keen to be getting the lump out of his tummy. Harry’s daddy Russ, Oscar, his Nanna (my mum) and I waited together for the operation. Oscar was such a lovely support to all of us I think, and Harry was incredibly brave, I honestly don’t know how he does it? I felt sick with worry, fear of everything, angst, but just knew I had to be strong for both the boys.

When I got the call from the ward I was with my mum, it was only after about 2 ½ hours from when Harry went under general anaesthetic, which from what we had been told seemed too soon for it to be over. I hadn’t eaten anything and was shaking like a leaf waiting to hear what was to be said, but was over the moon when I heard that Harry was in recovery and that he was ok. I literally nearly collapsed; I think I almost fainted with sheer relief! We saw Miss Lakoo before Harry came back to the ward and she said that it went extremely well, that he had a wound approximately 15cm and that she was confident that she had removed the whole of the tumour that she could see. She was really pleased. I was far more than that and I hugged her while I thanked her, and of course cried!

Harry was asleep and extremely drousy for quite a while and Oscar came back from his little trip with his Grandma (Sally) who had kept him occupied for part of the day. He returned full of beans and seemed to have been ok. A little later, seeing his little brother hooked up to machines, and pain relief, and clearly in some discomfort, Oscar went quiet before he left the hospital. I recognised that he might be holding his feelings in, so I took him to one side and said to him that it was ok to cry and then bless him he did. He told me that he was sad that Harry had to go through all of this and that he could see that he was in pain. Oscar was right; life can be so unfair at times.

I stayed in hospital with Harry and was yet again amazed at Harry’s determination and strength. He could barely breathe at one point during that first night, which was just terrible, but the pain was managed well with morphine. We had expected to be staying between 5-10 days following the surgery, depending on how he recovered. Because Harry’s operation was, in comparison to some, less complicated, and didn’t affect his bowel as it might have done, Harry managed to get up and walk after 2 days and we were allowed to go home!

High Dose Chemotherapy

We only had a few weeks at home after the surgery before Harry needed to start the dreaded high dose, or myloablative chemotherapy and have the stem cell replacement. We had been warned about the dangers and complications of all of this about to come, but of course Harry needed it, and we knew without it, the chances of relapse were even higher. Harry was expected to be in hospital in isolation for approximately 6-8 weeks. I was completely dreading it.

He was to have 16 doses of Busolfan infused over 5 days and then one dose of Melphalan after 48 hours, and finally the autoglous stem cell replacement/ transplant after another 48 hours. The idea of this is that the bulsufan and melphalan (high dose chemo) destroy the cells in the bone marrow, blood and other parts of his body, and then Harry’s own stem cells will be put back into his bloodstream in order to create healthy bone marrow. This usually takes 10 days to 3 weeks. During this time there is a huge risk of infection, hence being in isolation, and antibiotics and blood transfusions are needed during this time.

As it turned out, Harry was quite well in himself for the first week or so of being in hospital, and was almost climbing the walls (quite literally!) He gradually lost his appetite and got a very sore mouth, but it was about 4 or 5 days after the stem cells had been replaced that I could see Harry really go downhill. This was the really hard bit that I had been waiting for. He was then in a lot of pain and not well at all for about 10 days, where he had multiple antibiotics, blood and platelet transfusions and was also completely off any food or drink, so had to be given fluids and eventually TPN (Total Parental Nutrition). We knew that during this time, there were all sorts of risks, especially with his liver, and that the chances of Harry having to go into the Intensive Care Unit was pretty high, but we were thankfully lucky not to have to go through that. It was hard enough. Harry lost his hair again during high dose; he literally pulled it out and dumped it on the floor and it didn’t grow back for a long time.

During a lot of this time we couldn’t have any visitors other than immediate family, so it was difficult, not only being in hospital for such a long time, but also for Oscar to be going from pillar to post and managing this, and the emotions that we were all going through. I always kept a diary of Harry’s medicines, reactions, bloods, temperatures, food and drink etc and every day we tracked his bloods closely. When his neutrophils went above 0.7 we knew that the worst for him was over and then it became all about helping him start to eat again himself and building his strength up. Harry had had such a horrible time with nasal gastric feeding tubes that he was utterly determined not to have one again and bless him he didn’t need one! He slowly built up his appetite and managed to come off the TPN and once he wasn’t reliant on this and his bloods were at a safe level, we were able to go home on 12th October!

I will never forget the time that Harry came off all his attachments/tubes etc and jumped up and down on the sofa (my bed) so happy to be “wireless” as we called it!! He was desperate to give me a proper Happy Harry cuddle, where he runs and jumps up at me, it was a completely adorable moment for me! It was frightening how tiny he had become though, as I held him in my arms, I remember that too. But at least as far as we were concerned the hardest bit was done and we could now build him up again, ready for the next bit. We could also go home to Oscar, neither of us could wait to see him, we had both missed him so much. I had had a few days on and off during this time to go home when Harry’s daddy Russ stayed with Harry, but it never felt enough time with my big boy.

Harry ended up spending just over 4 weeks in Room 1 at Kamran’s Ward, our goal was to make it home for Halloween this year, and we made it in good time!

Fundraising

Due to the aggressive nature of Harry’s cancer and the unexpected setbacks that he has already encountered in his treatment, to help with his fight we have set up the Mad About Harry fund. It is very possible that Harry will need to go to the United States or Europe to receive further treatment.  Although the BEACON trial was successful, and he is back on track for his treatment at The John Radcliffe, given the nature of this disease, we would like to ensure that any viable worldwide treatments to prevent relapse will be available for Harry, to ensure the best possible chance for his future.

Friends and family have begun fundraising and have set an initial target of £250,000. We are very lucky to have such supportive family and friends, but to achieve this target we need everyone to get behind the fundraising and make a difference to Harry’s tomorrow. To find out more about how you can get involved, please read How to Help Harry

From Harry, myself, Russ and Oscar, thank you for reading Harry’s story and for your help. xx

Thank you to everyone at:

Harry’s School, Eversholt Lower School
Milton Keynes Community Nurses
Milton Keynes Hospital Wards 4 & 5
Kamran’s Ward, The Children’s Hospital, John Radcliffe, Oxford
The Royal Marsden Hospital, Sutton

Jackson-Stops & Staff, Woburn
Coker Brand Design
VCCP

and last but certainly not least to my amazing family & friends, you know who you all are…