Our Pal - Jamie R

Story written 2003

Jamie is 4 and was diagnosed with High Risk Neuroblastoma, stage 4 in August 2003. He has been given 20% chance of surviving after 5 years, and is 1/2 way through treatment. Jamie has just had his tumour removed, and is about to spend 6 weeks in BMT, having high dose chemo and stem cell rescue. He will be in total isolation, and unable to go out of his room for the whole 6 weeks.

Update September 2005

Post Pals released a balloon in Jamie’s memory with the quote “Its not how long a star shines, what is remembered is the brightness of the light”.

Update August 31st 2005

Jamie passed away in hospital peacefully, his Mum and Dad were by his side.

Update August 29th 2005

Tonight, Dave and I decided to take Jamie into hospital, where he’ll go onto a Morphine drip continuously. This means he will sleep and won’t have to wake for medication… it is becoming hard to wake him now.

We feel that Jamie is starting to suffer emotionally, and can’t bear to see him this way. He’d be more comfortable in hospital, where we wouldn’t have to carry him up and down the stairs, and into the car everyday for platelets.

His HGB was around 10 on Saturday, so I suspect that by Wednesday, it would have dropped to around 8. We won’t be giving Jamie any more HGB blood transfusions, but will keep giving him daily platelets to stop him bleeding. If he doesn’t have platelets, he will bleed from nose, eyes, and also internally, which is horrific.

Update August 26th 2005

We noticed a change in Jamie’s breathing. It has slowed, and has longer pauses between breaths. We checked Jamie’s oxygen saturation and heart rate, and they have gone down slightly, which would indicate that his body is slowly winding down.

We have made sure that one of us, at least, is sat with him at all times, in case he decides to slip away, we would hate him to go alone. We’ve been softly talking to him, while holding his hand and sometimes stroking his head, telling him how proud we are, and what a brave boy he is, and how much we love him, and saying it’s ok to go now…

Tomorrow we will take him into hospital, and talk to the doctor about what happens next. If he isn’t able to wake to take his Morphine, he will go on a drip, which may mean he has to stay in hospital. This we don’t mind, wherever Jamie is comfortable.

We have decided that it’s definitely time to stop giving Jamie any more blood transfusions, they would be pointless, and as the last one didn’t have much affect. We will continue platelet transfusions, to stop him bleeding, and continue to keep him pain free with morphine.

Update August 22nd 2005

Jamie and I were up last today. I helped Jamie to get his clean Pyjamas on; Nemo, and I followed him down to the lounge, where he climbed up into the sofa, to return to sleep.

Jamie was in a good mood, and helped to make a cup of tea for us all, stood on his stool in the kitchen.

Jamie and Dave lounged on the sofa, watching Tom & Jerry on video, while I sorted some photos into frames. Jamie was giggling at the video, which was nice to hear, as he’s been so down lately. Yesterday he said he was sad at being poorly, and feeling rubbish.

We took Jamie into the hospital around 4pm, for his platelets, and discovered that his level was already good, at 53. We decided to give him the platelets anyway, as normal level is 150. On the way home we picked up pizzas, as normal!!!

After all the Grandparents left, it was just the 3 of us. Jamie had been mostly asleep during the Grandparent’s visit, and remained asleep still.

He isn’t awake for long these last few days, and when he is, he’s not too happy.

It hurts so much to see my little boy now, compared to photos of him just a few months ago, smiling and himself. I found some photos of Jamie while he was in BMT in Bristol, and he was really chubby!! I also noticed he smiled through most of his treatment, and this brought tears to my eyes, realising how much he has changed, and how we don’t notice when we see him everyday.

Looking at Jamie tonight broke my heart, he’s just skin and bones, and looks much like a baby bird in the face… All we’ve fought for so hard, to get rid of his cancer and it creeps back just when we’re looking to the future again…

We doubt Jamie has more than a week, 2 at most left to live. He needs blood on Wednesday, will probably again before Saturday. He has tumours growing in his face and head, which aren’t yet causing him pain. Today we were given a special medication to administer in the event of Jamie having a seizure, something I hope wont happen.

We’ve decided to that we’d rather Jamie was in hospital when he dies. He needs platelets everyday, and there will come a point when Jamie isn’t waking at all, and he will not receive anymore blood transfusions. He will remain in hospital from this point; we feel it unfair to drive him back and forwards at this point.

Dave and I feel more comfortable being at the hospital with the doctors, and nurses to provide care and any medications necessary to ensure Jamie is comfortable at all times.

Update 19th August 2005

We stopped and got a Pizza from Pizza Hut, on route to the hospital. And I had a chance to talk with Jamie a little, to make sure he wasn’t scared, unhappy or anxious about anything.

After seeing the school secretary today, and hearing that the summer holidays end in September, Jamie announced, out of the blue, to me that he was going back to school in September, and would have his wiggly out. I discussed with Jamie that he still needs his wiggly to have blood, and asked him if he knows why the oral chemo has stopped. Jamie assumed it was a gap between cycles, so I gently explained to Jamie that the oral chemo was not doing what it was meant to do, and that his cancer was getting worse, and making him more poorly. Jamie asked me if he was going to die. An extremely difficult question to answer to a child so sensitive and determined to fight. I explained that it is a possibility. A cowardly answer, but I felt that Jamie would become scared and upset to know this at present. I wanted to talk with Jamie more about the subject of death, and heaven, and try to make it appealing, and special, so hopefully Jamie won’t feel anxious, or reluctant to leave us. We talked about Heaven, and I assured Jamie that IF he did die, he wouldn’t hurt, or be scared, and that Mummy and Daddy would be right with him, to cuddle him, and make sure he wasn’t scared.

Update August 15th 2005

Jamie was due to have platelets, so we set off early, Jamie was in good spirits today, and even wiped a bogey on my arm, as I drove to the hospital… it’s the little things that mean so much to me!!! The nurse took a blood count before she started the platelets, and we discovered that his day off from platelets had caused his platelet level to drop to 12!!!  White blood count had risen to 3.something, and HBG was 10.2ish, and Neutrophils are 0.64. His HGB was 11.something on Friday, so I think he’ll need a blood transfusion Tuesday, if not tomorrow night. At 12.30, two hours later, we left the hospital, after collecting a prescription of Senakot to help Jamie’s bowels, as he hasn’t gone for over a week!!!

Jamie requested a Pizza Hut!!!! So I couldn’t drive faster before he changed his mind. I asked if he wanted to eat in or take it home, and he said, “Take it home… You go in and I’ll wait in the car Kel”!!! Bless. When we arrived home, Jamie ate half a slice of Pizza, and had a drink of Loserade (Lucozade) and than had a sleep on the sofa while I did a much put off Tesco run!!!

Jamie’s been quite awake and happy today, playing Half-Life and Grand Theft Auto with Dave and I. We’ve asked him to do other stuff, but that’s all he seems up to. He isn’t keen on going out. He is having short bursts of awake ness and activity, and then having sleeps. Dave has timed his MST Morphine and Oramorth perfectly, so there is no Gap in Pain care, and Jamie appears comfortable and content all the time.

This morning, and evening Jamie has experienced difficulties in weeing, but after he was encouraged to persevere, he managed in the end.

Update August 13th 2005

I hope to do daily updates from now on, as I realise people worry, and by a week, I’ve forgotten what’s been happening!!!!

Last Friday Jamie had Platelets, and my friend Coralee came to visit for the day, she was shocked when she saw how skinny and pale Jamie was. We don’t notice, as we see him everyday!

On Monday morning we discovered that Jamie’s MST Morphine tablets had run out. By the time we got to the hospital for more, his dose was late, and Jamie was in pain and upset. He had platelets on Monday and Tuesday, but didn’t do much else but sleep… he was not comfortable, and had a new pain at the top of his leg, where it meets the stomach.

Jamie was much the same on Wednesday, sleeping most of the day, but woke for a while to see his granddad Paul, when they came to visit in the evening.

On Thursday we took Jamie into hospital for a blood transfusion, and platelets. We hoped this would perk him up like it did last time, but it didn’t have much difference. Jamie remained uncomfortable and sleepy.

On Friday Jamie was slightly better. We’d been advised to up his MST morphine dose to 2 tablets twice a day instead of one. So now he gets 10ml twice a day. This serves as background pain relief that lasts 12 hours, and we are to give oral morphine 4 hourly on top for pain.

Jamie was a little more awake and talkative on Friday, which was good to see. The doctors have said that this is the beginning of his slide downhill. We have stopped the oral chemo, and are now looking at keeping Jamie comfortable and pain free, so he can have a peaceful passing.

I would prefer not to have visitors, as Jamie is not himself anymore, he is depressed, and often sad. He doesn’t seem to like people being around and fussing, it is upsetting him. He just likes to be left to do as he pleases.

Luckily Jamie doesn’t seem to be in pain today, Dave has fine tuned the timing of his oral morphine to cover pain at the end of his MST dose, as the MST doesn’t seem to be lasting the 12 hours it should.

We hope to spend the time now, keeping Jamie comfortable and happy, and having some special time with him, to make sure he knows what is happening, and that he can talk through any fears he has with us. And hopefully, so we can say our goodbyes, so Jamie has closure, and can pass peacefully.

Update August 5th 2005

Due to the rate at which his counts are dropping, he will need platelets every day now. On Tuesday the plan was to take Jamie to Powderham Castle in the afternoon, where they had Jousting, and were going to knight Jamie. But when he got home from the hospital, he was tired and in pain, so we had to cancel. We gave Jamie 2ml of oral Morphine, which helped him to sleep for a few hours.

We were afraid that this was the beginning of a downward spiral for Jamie… we had noticed that during the past week he has lost his sparkle, and had become more depressed, and uncomfortable.

Nana Pat had taken the day off especially to come to Powderham castle with us, and was disappointed and concerned to see Jamie so upset. She sat with him while he slept, then he suddenly woke up, full of beans, and demanded Fish and Chips on the seafront!!!!!

I questioned his rate of drop in blood counts on Monday, to the Dr, and was told that in her opinion, it was due to disease progression, and that it doesn’t look like the chemo is working. In fairness the chemo hasn’t been given a long enough chance to see, but it’s looking unlikely that it will improve Jamie’s condition.

The good news is that the chemo isn’t adversely affecting Jamie, so we can keep him on it, while we wait for another miracle…

He has been put on a new pain killer, still Morphine, but a slow release, which he only has to take twice a day, morning and night. We have seen a difference in Jamie today, after starting it this morning!!! He has been happier, and more active.

Update July 30th 2005

Thank you to everyone who has left messages in the guestbook, and sent cards and gifts. Post Pals web site has Jamie featured, and he receives lots of cards, and gifts. He loves bubbles, and craft stuff that has been sent. One person sent a knitted pink dinosaur, which Charlie has adopted!!! When Jamie gets a Post Pals parcel, he says, “it’s a pass the parcel!!!” and enjoys taking off the wrapping paper.

It was decided that Jamie might need platelets two days running some weeks, as an extra top up, as he is still bruising in between platelet transfusions, and will need blood more often than once per week. The doctor said that Jamie’s condition seems the same as it has for the 8 weeks since we had been told that Jamie had relapsed, which is good. Of course, his bloods have gone down a bit, due to the chemo. Jamie started his second 3-week cycle of Etoposide oral chemo today.

Overall, Jamie has been well and happy, but has had his bad days, due to low blood counts. His eyes have a yellow, bruise-type colouring around the lids, and underneath, added with a bruising colour some days. This is worse some days than others, and can change throughout the day. We are not certain what is causing this, it could be low platelet levels, made worse by Jamie rubbing his eyes in the morning, or could be tumours behind the eyes or a characteristic of Neuroblastoma, which sometimes goes to the eye sockets. The doctor is not sure either but says that it would not be treated any differently whatever it is. Jamie’s weight remains around 15.8kg, as it was 8 weeks ago, and his appetite is still the same. His mouth does not seem so sore anymore, and he does not have to spit his chewed up food out as often as before. He has a bump on the front of his head, which goes up and down, I was assured it was a bump and not a tumour, and the X-Ray did not show anything sinister. Jamie’s mood is up and down, in coincidence with his blood count levels, and he prefers to wear pyjamas on his low-level days. Negotiating is useless, and upsets him, but on good days, he will wear a t-shirt and tracksuit bottoms.

Jamie has been having the most amazing time, for a full update of his activities see his webpage.

Update July 15th 2005

Since the last update both boys have been baptised, at the local Catholic Church of Our Lady and St Patrick.

Jamie went into Exeter hospital for his platelets and blood test as normal on Monday, then again on Wednesday.

On Wednesday, when Jamie arrived home from the hospital, he’d been asleep in the car, and awoke complaining of a headache.

I gave him a cuddle on the sofa, and his headache seemed to be getting worse, and Jamie started crying, then screaming in pain.

We were worried that it was due to a lump that Jamie has developed on his forehead… thinking it was a tumour, so phoned the hospital, where they told us to come straight in.

We dropped Charlie off with Auntie Kim, and Dave drove, while I cuddled Jamie on the backseat of the car. By this time, he was semi sleeping, and not wanting to be moved.

When we arrived at the hospital his temperature had started to shoot up, and antibiotics were given. We thought this strange at the time, as Jamie had headache, but it turned out that the headache was a symptom of septic shock, through a line infection. Within the hour, Jamie’s temperature was returning to normal, and he was almost back to himself.

We had to stay overnight in hospital until Saturday, when they had cultures back, and had put him on an antibiotic that was working. The infection was from bacillus bacteria in his line, and if it doesn’t clear after 10-14 days on antibiotics, Jamie’s line will have to be removed, and re-inserted somewhere else (God knows where!). Luckily Jamie was allowed to leave the hospital for the afternoon, and return in the evening for meds, to stay overnight. We’ve been taking Jamie into hospital everyday since Saturday, for his antibiotic, which needs to sit in his line. On Saturday morning Jamie received a blood transfusion, and then he had platelets on Sunday, Tuesday and today. His blood counts are holding quite well, and don’t seem to have dropped much, if at all from oral chemo.

We spoke to the doctor about the plan of action, with oral chemo, and because Jamie’s cycle has been interrupted by his infection, he will need 3 extra days top up at the end of this 3 week cycle, then we will assess how well it’s doing at the end of the next 3 week cycle. So he will have a week off, then 3 weeks of chemo, then scans.

We’ve been told that the chemo can either be working and reducing the cancer, or stabilising it, or not working. If it’s working we hope to stick with it. If it’s not, we will try the Topless Cyclone chemo, which is stronger, and will go into his central line. This will have to be done in hospital, and Jamie will need to go up to Bristol, as he will have full scans first.
We don’t know what we’ll do if it’s just stabilising it… I’m not sure if we want to burn bridges by moving to different chemo until this stops working altogether… we will have to wait and see.

Jamie has been tolerating this oral chemo extremely well; as only Jamie can… he has had no bad effects, and has kept his appetite, with no vomiting, or hair loss. He still looks and seems well, although due to his low platelet count, has many bruises on his legs, and one of his eyes looks yellow. Some days are worse than others; he has good and bad days.

On Sunday night Jamie had a very restless night, and woke complaining on knee joint pain. We gave Calpol, which didn’t seem to help, so gave Codeine, which didn’t help either. Jamie was very distressed, and Dave and I couldn’t do anything to comfort him, we each had a leg, either side of him, and were trying everything we could think of to rub, stroke, and position his legs, to relieve the pain. In the end we had to give Jamie Oral Morphine, which did help, and knocked him out too!!!

Jamie slept till we left for the hospital on Monday, at around 12.30, and then slept on and off all that day!!!! We are now giving regular Calpol and codeine, in 2 hourly alternative doses, to keep his pain away.

We have been doing lots of things (see his caringbridge page for more information).

There is a lot of good stuff planned for Jamie over the next week or so, including a ride in a Hovercraft, another helicopter ride, but this time from the Navy, for an Army/Navy day, to see an assault course, tank, and other stuff. Jamie has also been offered a chance to meet a baby elephant, at Whipsnade Zoo, a ride on a quad bike, to drive a tank, test drive in a Porsche, horse riding, meeting birds of prey, special appearance at a joust, a leisure cruise, hot air balloon flight, trip to digger land, flight in a biplane, lesson in ventriloquism, and there is still stuff in the pipeline!!!

We will be planning things a week at a time, as we don’t know how well Jamie will be from week to week. We also hope to fit in some more visits from his friends and family too, as well as the boring but necessary hospital visits!!

It has been extremely hectic since the last update, with Jamie being unwell. When he was allowed to stay at home on Saturday, we still needed to go into the hospital every day, for antibiotics, and bloods. We normally got out around 3pm, which didn’t leave much time for anything else. By the time we got home, and sorted with his oral chemo, and dinner, the day seemed to disappear!!!

Jamie has wanted to go into school, but we just haven’t had the chance! Today he did though, and saw some school friends, and picked up his class photo.

Update June 29th 2005

Technically Jamie should have gained his wings, and should be an angel now, but he seems to be fighting this monster himself, and is still as well and active as before!!!

I will do a proper update of our Legoland trip soon, but I wanted to make sure you weren’t all worrying, from lack of news.

Jamie started oral chemo (Etoposide) on Monday, and so far has no side-effects. He has asked to fight this big time, so as long as he is ok on the oral chemo, we will be stepping up the fight and getting the big guns (Topless Cyclone chemo) in the near future!!!

We had a frank conversation with Jamie and explained that oral chemo will only slow the cancer down, if it works, but that he is still going to die.

Jamie said he doesn’t want to die, and is willing to fight, whatever the cost!!!

Update June 25th 2005

Jamie is currently in Denmark visiting LegoLand. He is having Platelets and blood transfusions regularly.

Update June 18th 2005

Thanks to all who sent cards, we got so many it’s impossible to Thank everyone individually.. Jamie gets so excited he almost pounces on the poor Postie!! The balloons, touch a bubble, star wars sticker book went down well, and Jamie loved the helium balloon. Jamie loves it, and when he gets post, he says “Here something from someone I don’t know” !!!! LOL

Jamie is starting Oral Etoposide Chemo on Monday. This should slow things down, but may not even work.

Next weekend we are off to Legoland Denmark, where Jamie will meet the Designer of Lego, and be presented with the Star wars Death Star Prototype.. the only one made so far!!!! He is so excited.

Update June 2005

Jamie was 1st diagnosed with Stage 4 Neuroblastoma at the age of 3, in August 2003. This was after a spell of 5 weeks of fevers, sickness, tummy ache, weightloss, general not being right, on and off. We visited doctors several times during these 5 weeks, to be told that Jamie had the tail end of a virus. Little did we know then, that Jamie had a large tumour growing from his left adrenal gland, squashing his kidney, wrapped around his aorta and peeking into his chest cavity!!!

Jamie received 12 rounds of Rapid COJEC Chemo, every 10 days, which lasted 2 or 3 days each, followed by surgery to remove his tumour on Nov 5th 2003. It took Jamie only 7 days to recover from surgery; the first night was a scary one in ICU for precautions. Then Jamie developed digestion problems, and couldn’t keep his food down, so he was started on TPN (Total Parental Nutrition – via central line) and a nasal gastric feeding tube was inserted.

Jamie didn’t get on with the nasal tube, so a gastrostomy tube was fitted directly into Jamie’s tummy, through the tummy wall. This didn’t work well either, so the Gastrostomy was extended to a Jejunostomy, directly into the jejunum… this was successful and Jamie was able to get nutrition.

Whilst these digestive issues were going on, Jamie had a Stem Cell Harvest, extra chemo, High dose chemo, followed by stem cell rescue (like a bone marrow transplant but Jamie received his own bone marrow back, in stem cell form, which is like baby bone marrow, seedlings) We had a rocky week or so during stem cell rescue, where Jamie was getting unexplained fevers, and the doctors were trying all the antibiotics and nothing was working!!!

Finally Jamie was discharged from the Bone Marrow Transplant Unit, onto his oncology ward to iron out remaining digestive problems. It was lucky we hadn’t gone straight home, as we would have if Jamie didn’t have digestive issues, and Jamie developed a dangerous Pulmonary Hypertension (Serious Heart Disorder) which doctors believe was caused by the high dose Busulphan chemotherapy that Jamie received before stem cell rescue. Back to ICU went Jamie, to be treated with Prostoglandin Hormone therapy. After 2 weeks the Pulmonary Hypertension reduced, and so was the Prostoglandin Therapy, until Jamie was well enough to come home.

1st May 2004 we are finally home!!!! And in June Jamie started a 6 months course of Accutane medication, at home, which was meant to clean up any remaining cancer cells. In September Jamie was declared NED, which is like remission, means (No Evidence of Disease) Hooray!!!!!! His digestion issues improved, so he no longer required his tummy tube!!!

Then in December the Accutane was stopped early when Jamie was admitted back to Bristol Hospital with a twisted bowel, a common side effect from having stomach surgery!!! He was soon home in time for Christmas!!

All had been going great, Jamie started School, I got part time voluntary work, got a dog, Jamie turned 5, then BANG!!!!!!!

One night we noticed Jamie was coughing, which he had been for a few nights, but this night was bad, so I decided to check on him, and discovered he had a fever, fast pulse and noisy breathing… after a trip to the local A&E their suspicions of Phemonia turned into a chest infection, and Jamie was kept in over night for antibiotics. The blood test results came back the next day with abnormalities, so we were sent to Bristol for more tests.

It was then a few days later we received the dreadful news that Jamie’s Neuroblastoma had returned worse than before, attacking his Liver with hundreds of tumours, and making his bone marrow useless… he was unable to fight infections, and was Neutropenic, like after chemo!!! The doctors have told us that this time there is no cure for Jamie, treatment would put his weak body at risk, and would cause too much suffering, with slim chance of success.

We took the decision to return home with Jamie, to make the most of what time we have left.. the doctors couldn’t say how long, at the time it seemed like weeks, but he has improved since getting over the chest infection, blood counts are holding well, so it’s looking more like months now!!

We are thankful for any extra time granted to us with Jamie, without Jamie suffering, and have planned lots of fun, special stuff to do.

Jamie is aware that his cancer has returned, and that he is very poorly, but is not aware that he is dying… when he asks us, we will tell him the truth, and will let him know when the time comes.June 2005 – Jamie has re-joined Post Pals, please could we send as much mail as possible to him in the next week or two.

Jamie is now out of hospital and doing well, he is now moving on from the project to try and get back to a normal life.

Post Pals wishes him and his family all the best for the future.