My Story
I have written about what happened to me and my son Joe and his diagnosis of the disease ALD (Adrenoleukodystrophy)
Please click the link below to take you to my story
Cousins
Gemma had very special bond with Joe, he adored her and she always made him feel happy and never different from anyone else. Even when he couldn’t walk properly or communicate, she would take his hand and guide him round. He would touch her face and always smile and giggle, she misses him terribly but always talks about him so that keeps him here with us all.
Gemma did a school project in R.E. about Joe, we have uploaded this to the website so you can all read it. To read this please select Gemma from the home page or click on her picture above.
Reece loved to play with Joe and make him laugh; he also would guide him and was always so kind. He was diagnosed with this awful disease just after Joe, but luckily it hadn’t progressed as much and he had his transplant a few weeks after we lost Joe. This must have been such a scary time for him but he stayed so positive and brave throughout everything, he always talks about Joe as if he is here still and he said if it wasn’t for Joe he wouldn’t be here today which makes me so proud
Hannah was only three when Joe passed away but I always tell her how much he loved her and mothered her. He would follow her about and always be very gentle. She always talks about him and remembers him which makes me so happy. Hannah was so brave to give Reece her Bone Marrow; she also was so positive and happy throughout.
Lennon never got to meet Joe but we always show him pictures and when we say where is Joe he points to the sky and says his name. He is so brave and happy, he was diagnosed with ALD when he was born and started on Lorenzo’s oil and hydrocortisone when he was around two as his adrenal glands failed. Unfortunately Lennon showed some signs of brain changes and he had to have a bone marrow transplant. After a few months and a few set backs this has been successful and his ALD has gone into remission.
To read Lennon's Story please select from the home page or click on his picture to read it.
Gemmas Story
As part of a school project for R.E. Gemma had to write a story on who her idol was, she chose Joe.
Why he was my idol
WHAT HAPPENED TO HIM?
Unfortunately on the 17th August at 8:25 at night he passed away, aged 6 years old. My auntie Elle said it was so peaceful when he took his last breath. We didn't want him to go through what he had gone through anymore. He lost his hearing, his sight and couldn't eventually walk at the end of his life. Before he passed away he came home for a couple of days to spend some of his last days with the family and of course his mum. Whilst he had the disease, I was the only one who could make him laugh and entertain him. He would touch me and then he knew it was me.
All About Him
Joe loved batman and spiderman. He had every James Bond film there was. Before he died and was diagnosed he watched the last Pierce Brosman, James Bond film
He never went on consoles. My Auntie bought him a Playstation One but he never went on it. All he played with was action figures and watched films.
WHAT HE DID AT SCHOOL?
Whilst he was in hospital
Thanks For Reading My Story
Gemma Mumby
Age 12
Lennon's Story
After Lennon's last brain scan in april 2008 they noticed some brain changes.
August
August 27th - Lennon had his scan today we stopped at Pact House over night Lennon came round from the anethetic fine but was not happy with us, so he put his blanket over his head! This scan was a pre-transplant scan.
August 28th - Lennon had his broviac line put in today and had a Bone Marrow test. He was very washed out afterwards and apparently can bleed a bit after line is put in chest.
August 31st - Lennon had all his hair cut off today. He has always had long hair, so it was abit of a shock but that was the least of our worrys.
September
1st September Lennon had 5 hydrocortisone tablets at 8pm ready for chemotheraphy; Tomorrow at 2 we have to wake lennon up so we can give him 1 hydrocortisone tablet.
2nd September Arrived at hospital and Lennon had to have a needle, he hated it because they couldn't find a vain, so it took ages but from now on he will have blood took out of his line in his chest. He also had a liver test and heart and lung test to make sure everything is ok before transplant. At 8-am chemotheraphy was given for 2hrs then he was given a sleepy drug. The next chemotheraphy was then given and the reaction he got was a temperature, to combat that he was given a large dose of calpol. He had a really good nights sleep and was given hydrocortisone at 2am
3rd September Lennon woke up fine, had a wash and had some beans on toast and played on his PS2. He is on his second day of chemotheraphy. He is on a drug called Fenigan now. He hasn't had a temperature and seems to have woke up better after a long sleep. For dinner he had potato gammon and beans and a rice crispy bar. Around 6pm lennon felt shaky and has spots all over his face which is a reaction from his chemotheraphy, so he had a certain medicine and that made him a lot better.
4th September Lennon woke up fine, his first lot of chemotheraphy today was ok the second bag has given him a reaction, same as yesterday spotty face and feeling hot. He had hydrocortisone and fenigan and he fell straight to sleep. He got a pirate of the caribbean crayon box from the lady who runs the play room. He is so well looked after here, it makes us feel so safe. Still got a long way to go though yet.
5th September Lennon woke up at 6am and he was so happy, like always. He has no rash this morning. For breakfast he's had beans, sausage and toast, he ate it all. Lennon is hooked up to hydration and is going to have his next dose of chemotheraphy in 1 hour and 10mins. He didn't get any sickness. He pooed quite a bit today, he is back in nappies because of the hydration and he wees alot. He went for a chest x-ray today because we think the fenigan messed about with his breathing while he was asleep. Breathing has gone back to normal now Dr Vora checked him over and he said his chest is fine he had a good nights sleep.
6th September Lennon is still on hydration today, he woke up really happy, had a bath and hairwash. He had a big breakfast again, he loves his food and he is on an hours chemotheraphy. He is having a really good day today. He hasn't felt sick yet and he is so happy
He had to take something to help him wee more, as he isn't weeing as much as he should be. This drug he takes for it is so good, as soon as he takes it he wees loads straight away. GOOD DAY.
7th september Lennon woke up at 12am, 2:45am & 6:45am for a wee and he has lost abit of weight; That is good it means he is now not holding on to fluids. He had his chemotheraphy today & he had to have something to make him poo as he’s not going. Oooooh Noooo!!!!! He’s watching Fire Man Sam, he is very quiet, looks abit down not as chatty as yesterday
8th September Lennon has woke up happy, he’s still on hydration till tommorrow & he has had his last chemotheraphy today. He is in good spirits but alot more tired today. We played bowling with him, he loved it and we also took him to the play room to play with the water activities there.
9th September Lennon woke up very tired this morning but he is still smiling and eating. He had cycolsporin anti rejection drug today around 6:30am, this is for 6hours. Dr vora has just been to see us he said Lennon is anemic but he won’t need a blood transfusion because his Bone Marrow is coming tommorrow and that will sort it out. The kind lady who’s giving her marrow is having it taken out today, we are so excited but scared as well; She is the most amazing Lady to do this. All we know about her is that she’s 36yrs old and from America, we had no donor matches in England at all. Lennon hasn’t had a reaction to anti rejection drug today.
10th September Day Zero BONE MARROW TRANSPLANT DAY Lennon woke up fine just a bit tired, he’s having second lot of anti rejection drug today. Andy the nurse said there has been a delay at the airport due to bad weather so the courier will be here in the afternoon. His Bone Marrow started at 12:45pm and ended at 8:06pm his blood pressure is up a bit and he complained of a headache. He had some medication, he was sick twice so they gave him some fenigan and he went to sleep. We had to slow down the speed of the Bone Marrow going in to Lennon because they thought that’s what gave him his headache but the increased it again on the second bag, he had one litre in total. You watch the bone marrow going slowly into your sons body and just think how amazing that lady who gave him it, has been.
11th September Day +1 Lennon was fine when he woke up today at 5:40am then when he had his cyclosporin anti rejection drug. He went vacant and went into a massive fit so they gave him some medication to stop the fit and he went to sleep. He was taken for a CT scan because it could have been a bleed on the brain and could lead to a stroke. Luckily it was clear, so the conclusion was Lennon had a bad reaction to cyclosporin! The cyclosoporin was stopped and they gave Campath as a one off dose to get rid of the T cells and it does the same job as what the cyclosporin would have done. By the end of this terrifying day Lennon had settled and woke up fine.
12th September Day +2 Lennon woke up around 4 am this morning. He was sick and it had blood in it, they sent a sample to the lab. They think its because he needed platelets. He was sick again later but did not have much blood in it. He has been put on nil by mouth. Dr vora said he could be bleeding from the chemotheraphy which has stripped his stomach lining & gullet, he also had a bit of a sore mouth. He had a chest x-ray today as he still sometimes has to be on oxygen as stats go below what they should be. The x-ray came back clear, all in all he had a good day today
13th September Day +3 Lennon woke up fine today just very tired and slept on and off all day. Dr vora came to see him and was happy with his progress after the fit he had.
14th September Day +4 Lennon had high blood pressure at 4am this morning & he complained of a headache to us. We panicked we thought he’d would go into a fit again! They gave him something for his headache and it went straight away. His bloodpressure settled down and Dr Vora said if he carries on like this he will be happy.
15th September Day +5 Lennon woke up at 3am complaining of a headache and was crying, his blood pressure was high again. They gave him some calpol and he went back to sleep till after 6am. He blood pressure was still high so they gave him something to bring it down. He had loads to eat today but must start drinking more. Dr Vora said the chemotheraphy should not give him a sore mouth now. He has had his hydrocortisone reduced today as this could have been a factor with the high blood pressure. Lennons hair has started to fall out today because of the chemotheraphy, we cellotaped some in his diary.
16th September Day +6 Lennon woke up at 6am today, he had a very good nights sleep. He didn’t need hydration today which he has been having over last few days. He has Graft versus host disease round groin area, armpits and behind the knees. They said they expect this after transplant but need to keep it under control as GVHD can be very dangerous. He has a special steriod cream which is put onto the areas affected. They said his white blood cells are 0.2 which means donor cells have started to graft, they are happy with him today. His hair is falling out all the time now.
17th September Day +7 Lennon woke up at 7:30am today, he had really good nights sleep. His white blood cells have gone up again today to 0.4 and they are happy. GVHD has got worse today round groin area so they have given him a stronger cream to combat it. Dr vora said if his count keeps going up he can go and stay at Pact House at the weekend. We can’t believe it so soon after transplant, we are keeping our fingers crossed. Pact House is amazing, it is charity run and it gives parents and children a chance to feel normal again away from the hospital. We would have to stay there at least a week as he can still get infections from people; He’s still in the isolation stage so will have to be careful Pact House is empty at the moment so won’t be as difficult to keep him isolated. We will keep daily appointments to see Dr vora at the hospital and still go into his isolation room.
18th September +8 Lennon just really fed up now and misses all his caring family back home. His hair is thin but he hasn’t lost it all. He’s not happy with the itching due to GVHD so they have given him a stronger cream again. Dr Vora has told us we can go and stay at Pact House. We are getting used to giving him all of his medicines now, we will need to know this for when we go home.
19th to 23rd September We are still at pact house, going for our daily appointments at the hospital. Dr Vora is very happy with him and said we can go home as the GVHD has cleared up with steriod cream now.
24th september We are going home today. We just can’t believe it. Lennons so excited.
Lennons Story
Page Two
Thanks
Lennons been an inspiration to his Mummy & Daddy, brother, sisters and all of his family. He dealt with each day as it came and always had a smile on his face. He kept us all going through this massive ordeal.
We had lots of help from all our family and we were visited at the hospital all the time by them.
Big Thanks to Dr Vora and Staff , Dr Sharrard, all the amazing nurses and staff at Sheffield Childrens Hospital on ward M3, Beryl at (Pact house) Liz and Clic Sargent.
We met some wonderful people while we were on ward M3, especially Fionas family who were in the isolation room next to us. They were so friendly and such a close knit family like our family. Its just nice to speak to families with ther own circumstances and know your not alone.
Lennon’s dad and the whole family are Leeds fans, the Grimsby supporters club have been very supportive with the family and have launched an appeal to raise money for Lennon to be a mascot when he is out of isolation.
October
October 8th - This is just a little up date on Lennon, at the moment Lennon is still doing well,eating lot’s, and he as got such a hearty laugh!! it’s such a joy to see him looking good!! Well he as a big day on Thursday this week ,as he is having a bone-marrow test [he will taken to theater that day and put to sleep] it is to see if the bone-marrow is grafting, we are very pleased with Lennon’s progress but we still have to take one day at a time.
October 14th - Lennon woke up this morning feeling very tried and sleepy. Not in a very good mood! He went to Sheffield children’s hospital today for one of his check up’s with dr.Vora.
Lennon had his bloods taken today and all his other observations done. Well the reason Lennon is feeling listless is the medication Lennon is on. It is getting cut down and it is the large amount of steroid’s Lennon as been on, and all what Lennons little body as been through it is to be expected, this is how he is coping with it!
Well we have had some good news today Lennon’s bone-marrow grafting results came back, and it is working well over 95% , and that is what the Dr wanted so up to press thing’s are looking good. He go’s back in December to see if it is still grafting. but like we keep being told we still can only take one day at a time, so you can imagine we are so pleased! He goes weekly for his bloods to be taken and his normal check up with Dr.Vora and he still cannot mix with large amounts of people. He is slightly anemic.
November
Lennon got CNV virus and was admitted to Sheffield children’s hospital he’s was very poorly and was being sick and diarrhoea
Lennon has been in Sheffield hospital for the last two weeks and is very poorly. He has many ailments and viruses and his blood count is not going the right way.
Lennon will have to come off some of his medication so he can try and build up some resistance to the viruses and he now has to take some steroids.
Lennon has really dehydrated and is on a drip to try and get some fluids in his body
November 10th - Lennon’s blood results are very good on well on to the road to recovery
November 19th - After all them weeks he now has diarrhoea up to 20 times a DAY!!!!
November 22nd - Lennon has been in Sheffield hospital for the last two weeks and is very poorly. He has many ailments and viruses and his blood count is not going the right way.
Cleethorpes Whites Hummer
He never got to meet Joe but we always show him pictures and when we say where is Joe he points to the sky and says his name.
Cleethorpes Whites have bought a 12v ride on Hummer for Lennon on behalf of all the people who donated via them.
Lennon loved this and had a great Christmas and this helped take his mind off all what was happening to him.
Everyone at the Cleethorpes whites are very generous and we would like to say another big thank you to everyone who donated.
Lennon will have to come off some of his medication so he can try and build up some resistance to the viruses and he now has to take some steroids
Lennon has really dehydrated and is on a drip to try and get some fluids in his body.
Next Year
February 8th - Lennon is feeling a lot better and his medication is a little more balanced and he is recovering very well. Lennon was allowed home for a few days at Christmas
Dr Vora examined Lennon and his bone marrow results came back at 100% match which is excellent news.
The next few months are the important ones and early indications are promising. Keep up your support for Lennon and hopefully we will see him at Elland Road very soon.
April 15th - Lennon has had great news for the hospital and his Doctor has said his bone marrow transplant is 100% compatible. Lennon goes to school for a couple of days after the Easter holidays and starts to mingle with other children.
Lennon has come a long way in such a short time and is an inspiration to us all
July 14th - Lennon is recovering well and has now started school. His family are hoping to get him to Leeds game this season once his doctor has given his permission. Once Lennon is better we will contact Leeds to arrange him being a mascot. He has had a scan and this showed more changes on his MRI.
Good News
