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Saturday, March 20, 2010

Week 2

We have really enjoyed our second week here. The sun is out and we are feeling hot, hot, hot! It's going to change again next week but hey, Jamie and Poppy are loving it! We had an appointment with Dr. Maris on Wednesday and handed over the all important signed consent forms. What we are about to embark on with Jamie seems very scary as day by day Jamie is improving sooo much! His behaviour has really changed, his confidence and laughter, laughter which I have not heard for so long when he is playing!!

At the hospital Jamie helped celebrate St Patrick's day by searching for Shamrocks!! He was lead by the hand of a girl slightly older than him who seemed to take him under her wing. There were no arguments from Jamie!!! When it was time for Jamie to have his labs done [line cleaned, dressings changes, blood taken...] he was much calmer than the previous week. It was reassuring to hear some other poor kids scream in the other room. For once I was thinking "Thank goodness, its not Jamie!!" We met the dietitian for the Oncology ward and we have agreed to hold off with the feeding tube until next week. Jamie is likely to lose his appetite with the radiotherapy so will need nutrition anyway. We will see how he goes and when the time comes, they will insert the tube whilst he is under General for radiotherapy.

We also had a tour of the Oncology ward. I was speechless by the size of the children's rooms, there is even a sofa for the parents [although I think this is the parents bed!] The play room was beautiful and Jamie liked it so much that he thought he was staying! When we explained that he was in fact just visiting, he had the most almighty tantrum. I don't think we are going to have any issues with the talk about staying in hospital!!!

Over the next two weeks for radiotherapy, we are hoping to stay in the Ronald McDonald house, 15 mins away from CHOP. Our host family are wonderful but they live in New Jersey, a little drive from Phili. We have to be at CHOP for 7.30am everyday for two weeks and to get the children up and processed and in the car is a bit much and we can't be late!! Also we are hoping that Jamie will be well enough to play and join in the activities that they lay on and for us as parents we will get to meet other families, in particular, the Higgins family. Well done to their daughter Robyn, who is about to start her third round of antibodies! We are looking forward to meeting her and her mum Lisa.

We hope to return to New Jersey for the weekend. Jamie adores Barbara and Henry, our hosts and has been particularly intrigued with Henry's Porridge that he has each morning!! Barbara kindly offered to sit with Jamie last night, [Poppy was already in bed] so that John and I could go and get something to eat in the Diner. We ended up bringing half of it home as I am still not used to their portion sizes!!

Jamie talks about Dusseldorf and today said "I miss Dana [one of his German angels]. I think she has a sweet face!!" Such a special team of people and I know that Jamie really does miss them.

After what has been an unusual week for us in that as a family we have been able to do all the stuff that gets taken for granted, reality hits home AGAIN next week as we embark on the next phase. Lets hope that Jamie has few side effects and keeps well. He is going to need all his strength over the next coming months.

Thank you for taking the time to read this, as I don't often get the chance to update, when I do update the entries are lengthy!

Thank you to all of you that are still supporting the fundraising efforts, you know who you are and I can't possibly name everyone but just know that it is still helping!!!

Love to everyone from us all in the sun!!!

Tuesday, March 16, 2010


Our lives are revolving around food at the moment as Jamie is wanting to eat sooooo, after a brisk walk in the rain we ended up in a warm cosy American diner with slices of pizza, chips and onion rings! Jamie said "I'm enjoying this!!" Surely this will pile on the pounds for him??? He ate healthily for breakfast, a bit of porridge, followed by toast and then choc ice cream!!!!!!

Sunday, March 14, 2010

Well we have moved to New Jersey, across the bridge and are staying in another beautiful house! This time we have the attic rooms upstairs and Jamie has a double bed to himself which he loves!!!
We are in the heart of the Cranberry and Blueberry growing region although any crops beginning to grow will probably be washed or blown away today, the weather is hideous! Really strong winds and torrential rain, come on Spring!!!

Okay, so this blog has been set up because of Jamie and the fact that he has Neuroblastoma. We learned today that 4 children this week, became angels and were taken away by this awful disease, including Sophie Atay. Honestly if it wasn't for us seeing her appeal on TV, we would not have pursued this for Jamie. So Sophie, thank you for inspiring us and know that you are helping Jamie.

Jamie's settings for radiotherapy went well yesterday. He charmed all the nurses immediately and enjoyed being pushed on his bed to the scan room ready for anaesthesia. No kidding when I say there were 10 people in the room, all attending to Jamie! Incredible! Jamie pushed the anaesthetic into his line and was out in seconds!!! No pre med, just instant knock out!!! Give us some please!!!

The whole thing took about 30 minutes and when he came back and started to wake, he was very angry! Still, he piled on the charm and after 30 mins we were free to go. He has a plastic pice of tubing stuck over his scar on his abdomen with sticky tabs coming off and then ink marks to show the area being radiated. It takes about a week for the images from this scan to be fed into another to provide 3D/4D images [I think] so that's why he doesn't start until a week Monday. You can see now, the desperate situation we were in to get him over here.

Then Mummy and Daddy went to med school, well not quite! Here in America, the broviac lines have to be flushed and cleaned daily as opposed to 3 times a week in Germany and who has to do this job? John and I. We had our training in the family suite so are ready to flush! When we were up there, Jamie said to me "So does this mean you will be my Nurse or my Mummy?" That set me off then!!!

In the family suite they have tea and coffee making facilities, free internet access a children's library and play area, brilliant!

The couple we are staying with kindly took us all out to an American Diner. The Diners were all impressed with Jamie as he walked in and wiped his feet on the doormat!!!!

Today, the weather is awful so we are chilling. A friend of the couple who is married to a police officer dropped by offering support. She has 3 children under the age of 5 and knows how difficult our situation is. However as we have had so much help its not as bad as we anticipated!