Lennon's Story

After Lennon's last brain scan in april 2008 they noticed some brain changes.

Joe

On August the 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.

Joe

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.

Lennon

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

Joe

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.









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