Thursday 5th July 2007
Christian had the last session of radiotherapy yesterday and had his Hickman line removed this morning. he has coped remarkably well and even managed to get to his nursery sports day earlier this week. We are now all looking forward to a couple of weeks in Spain at the end of July.
In case you didn’t see it here is an amusing film we made last weekend…
Christian has had his first radiotherapy today. He was not particularly impressed with the room full of Doctors and equipment and was a bit upset but, hopefully, he’ll get used to it over the next three weeks. Unfortunately he doesn’t like the effect of the general anesthetic and so cries when he sees the white syringe. He did, however, recover very quickly and a couple of minutes after he awoke he was tucking into a jam doughnut.
He has had a tummy ache at night for the last couple of weeks which has been waking him (and us!) up. At first we assumed it was still pain from the chemotherapy but he had some tests yesterday and he has a urinary infection. He’s on oral antibiotics so that should clear it up pretty quickly but we are still waiting to hear back from the lab to confirm which bacteria is growing on his urine sample. Once identified they will either stick with the oral antibiotic he is on, or change it. There was talk too of sending him for an abdominal ultrasound tomorrow.
I am trying to collect the last of the sponsorship money. If you were kind enough to pledge and haven’t got around to paying please pay onlinehere. Similarly, if you ran the race and are still owed money from sponsors please send them the link and encourage them to pay online. Thank you all again for the amazing support, I have been assured by Sean Bonnington that the money raised will be vital to getting the “kids on 5″ project off the ground.
We have been home for 10 days now and Christian is improving day by day although he is still a bit weak. We are hoping to be able to have his Hickman Line removed after radiotherapy and before we go to Spain mid July so he will be able to swim in the pool!
After 4 weeks and 1 day it looks like we are on our way out of here. We will be going home this afternoon! Over the last few days Christian’s health has really improved. His cough is clearing up, his temperature has settled and his bloods seem to be doing everything on their own – without the aid of any transfusions or drugs. He is still very weak, but he is up and about a bit and no longer spends all day asleep in bed. In fact he is in the playroom right now with his nanny having a great time. I can’t tell you how wonderful it feels to know that he is at long last pain free and drug free!
Once we get home we will have a couple of weeks to strengthen him up before he starts his radiotherapy on about 14th June. This will be daily, under a general anesthetic for three weeks. And then that’s it! Hopefully no more chemotherapy or radiotherapy ever again!
I really would like to thank all of our family and friends who have been an absolute tower of strength over the last month. The food parcels that have been delivered to us either at home or the hospital really have helped tremendously and have been much appreciated. As have all the visits to us here at the hospital too. The Marsden isn’t the most convenient of places to get to so a big thank you for that too! It can get quite depressing here after a while, and knowing that company was on its way (with food and wine!!) gave us something to look forward to.
Christian has started to recover. His temperature has been under control and he is smiling again!
He is not eating yet but is completely off the morphine and we hope to be home within a week or so. The radiotherapy has been booked in, it starts in the middle of June and it is given Monday to Friday for 3 weeks. He will need to be given a general anesthetic each time.
They hope that the radiation will not effect the growth of the leg too much but there may be a very slight one.
As we expected it’s been a tough 10 days. Christian has been on Intravenous morphine for the pain and has had bad diarrhea and vomiting. He hasn’t eaten for about a week and has been on TPN which is intravenous nutrition. His Neutrophils and white blood count have been zero and as he has had a temperature he has been on antibiotic and antifunguls. The good news is that his Neutrophils have been boosted by a drug called GCSF and he can now fight infection and the mucositis should start to heal.
I’m looking forward to him laughing again, at the moment his only response to my usual nonsense is “stop it daddy, you’re annoying me”. And who can blame him?
Christian has had his stem cell transplant. It didn’t go too badly but wasn’t a lot of fun, it gives him a sore tummy and nausea as it is given. Bizarrely due to the chemicals used to preserve it, it gives him a strong smell of sweet corn first and he now smells of tinned tomato soup.
He has started to go downhill and the worst of it will come in the next couple of weeks. The chemo will attack his stomach lining and he and will probably give have a very sore tummy, throat and mouth. This is called mucositis, there is not much that can be done about it apart from treating the symptoms and waiting for him to heal. He will probably end up on intravenous morphine for the pain and not be able to eat so will be on nutrition through his NG tube.
Christian has finished all of the chemo now. He is not feeling too bad, a bit more sleepy than he has been but yesterday he ran around and played hide and seek with me taking advantage of an hour or so when he wasn’t attached to a drip. Today at around midday he will have the stem cells that were harvested a few weeks ago reintroduced. Apparently it can make him feel nauseous and can induce a seizure.
He still loves playing up to a crowd. Here he is in the play room yesterday…
Update – the stem cell transplant has been delayed until tomorrow, because they have decided to give him 72 hours from the end of chemo before he gets it. He needs to be well hydrated for it but as it has been delayed he has now been taken off the drip and has run off to play room with Anna. Watch out plates, here he comes…
Saturday 28th April 2007
Christian is in pretty good spirits. He has been on pretty much around the clock chemotherapy as well and various other drugs to combat potential side effects. His NG tube went in Thursday afternoon and he pulled it out in his sleep on Thursday night so they had to put it back in yesterday morning. It was fine last night but he doesn’t like the sensation he gets when medicine gets pushed down it.
He’s eating well and loves playing in the play room – here he was yesterday getting dirty…
We met with Kathy Pritchard Jones, Christian’s consultant yesterday. We have had various tests done this week ahead of the intensive chemo next week. All the results were as we hoped, with no spreading of the cancer to any other bones in the body. We are being admitted to the Marsden on Wednesday 25th, Christian will have a daily dose of the same two drugs that he has already taken as well as a one off intensive dose of a different one. He will need an NG tube in his nose as he will be very nauseous and will probably not want to eat or take any of the medicines that he will need, that will probably be put in on Wednesday.
We also discussed the next stage of his treatment that will be radiotherapy, he’ll need a daily dose to his leg for two weeks. As he is unlikely to stay still it means that he’ll need a general anesthetic each time. The effected area is not close to the growth plate of the bone but there is still a danger that it may slow down the growth in that leg.
The boys recorded a message for Favourite Auntie Danny
Villa Rental in Begur, Spain
