Tag Archives: Christian’s Story

Update From Claudia

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.

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Recovery…

Christian has started to recover. His temperature has been under control and he is smiling again!

marsden-36-Edit

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.

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Stop it daddy…

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?

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Stem Cell Transplant

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.

Face

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Aunty Danny’s Birthday

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

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Home

Christian is now home and feeling much better (as is Claudia). The intensive chemo is due to start on the 25th April (correction from incorrect date).

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Easter Monday (and my sister Sam’s Birthday)

Christian has been pretty unwell all weekend. His temperature has got up to 40.3 C, this has made him very uncomfortable and he has had vomiting and diarrhea. They are not sure if it is due to a Bacterial infection or a Virus but his CPR count has risen to 250 which, apparently, is a sign of bacterial infection. They have added a third intravenous antibiotic to help combat it.

Claudia seems to be suffering from the same bug as Christian has and to top it all off Henry did a Superman off a climbing frame and had to go for an X-Ray at A&E to make sure it wasn’t fractured.

Christian seems to be getting better, his temperature is not quite so high and he’s a bit happier. Wendy (Nanna) is staying with him at St George’s tonight to give me a break and Bob and Marc (Claudia’s dad and brother) are looking after him tomorrow while I go to work.

Christian is also getting GCSF which boosts his neutrophils so hopefully he will soon be better equipped to fight the infection.

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Easter Saturday

We got home from The Royal Marsden Last Sunday evening. Christian has had a cold all week so it was inevitable that when his neutrophils came down to zero we would be back in the Hospital. He spiked a temperature this afternoon and Claudia brought him to St George’s. As usual he is on first line antibiotics until they can rule out a bacterial infection. He is currently having a blood transfusion as he HB levels are also very low.

A few people have asked about how Henry is coping with all of this. So far, I reckon he’s done better than any of us. We got his school report last week and amongst lots of good comments it said he’s popular with his friends and his teachers and is a pleasure to teach. He also got an A++ for arithmetic and an A+ for drama where is he is a natural unless he is asked to mime…

KONICA MINOLTA DIGITAL CAMERA

KONICA MINOLTA DIGITAL CAMERA

 

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Chemo

We are at the Royal Marsden again. Christian came in for the last dose of this round of chemo. It was the one that is given over three days with fluids so his kidney is protected. We were due home yesterday evening but unfortunately his temperature spiked and Claudia had to stay here with him overnight. He is now on antibiotics and we are waiting for his temperature to stabilise before we can bring him home. We are hoping that’ll be tomorrow.

RayofSunshine

The plan is still to start the intensive chemo in the beginning of May and we will probably be here at the Marsden for the whole of May as he recovers. It’s possible we may come in a week early for an intensive dose of the same chemotherapy that he’s been on so far.

I have been given a long list of all the people who sponsored online, I am busily trying to reconcile that with the people who pledged sponsorship. If you did pledge and haven’t sponsored yet I would appreciate it if you could pay online here and send me a copy of the payment e-mail receipt. If you would rather pay by cheque please e-mail me for details.

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At The Royal Marsden

We are in The Royal Marsden at the moment. Christian has had a ultra sound on his tummy and pelvis which was all clear. We have also had the results of the MRI on both legs which shows no spreading on the left leg and the right leg is clear. This is good news as he been complaining of a sore tummy and pain in both legs so we had been very worried that he hadn’t responded to the chemo.

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