Lennon’s Story P2
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.