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Thursday, March 11, 2010

On The Move!

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We have decided to move out of the mansion as it is too far away from CHOP and over the next 3 weeks we are going to CHOP for radiotherapy everyday. We are going to be staying with a host family who live 20 mins from CHOP and she is a social worker there! I'm sure she can help me with Jamie!!!
We hope to then have our own place before the immunotherapy starts in April.

Tomorrow [Friday] Jamie has to be put under General Anaesthetic for a scan, ready for radiotherapy. I think they will be marking him up so he gets an ink tatoo which will stay with him. O'h well, if it means he is going to get better! We have to be there at 7.30am but that's ok as all of our body clocks are going a bit strange on us now!! By 9.00pm we are all in bed but awake at 6.00am. We are having the most sleep we have ever had since Jamie was diagnosed!!!

Off to the supermarket now, the food is fantastic here and cheap!! Fried Chicken last night with salad and rice - mmmmmmmm!!!!!

By the way, a little boy called Joshua Deller has been receiving treatment in New York, a slightly different form but antibody treatment nonetheless. If you read the updates on his site, ( it gives an insight into what is going to be happening with Jamie, including the radiotherapy.

Bye for now!!


OMG what a day!!! We went to CHOP!!! We set off for the train station and were amazed by how helpful people are! Two kids and pushchairs on trains is not fun but everywhere we went people were more than happy to help us!

To see the hospital in all its glory was breathtaking. It is absolutely huge! The building soared above us and was intimidating at first but once we got in and past security it was so serene. Music being played, lots of child friendly sculptures and activities. We met the oncology team who were fantastic. A detailed meeting with Dr Maris who is the head of the treatment programme left us feeling more positive than ever that this really is the right thing to do with Jamie. So specialist are they here, that they have their own Neuroblastoma nurse and Neuroblastoma social worker! I guess we'll be top of their list then as they saw how difficult Jamie can be!!! Just because the plasters that they use here are not the same as in Germany he went mental! We did warn them!

So we then went for lunch in the food court. What an experience! Any type of cuisine available and freshly cooked before your eyes. In case you got bored standing in the line then you could watch individual chefs on the monitors!! Jamie really enjoyed pesto pasta and said "I love this!"

The afternoon was just as busy with blood samples, cleaning the broviac and meeting the radiotherapy team. Jamie's platelets are now at 50,000 which means that they are going up on their own!!!! They are concerned about Jamie's weight so the nutrionalist will chat with us. He will no doubt need a feeding tube as he is losing weight. Another bit of good news - those that know us and Jamie will be aware of how difficult it has been to administer all the medication since completing high dose but we can stop it now!!!!!! Still needs the dreaded Kepinol though :(

The radiotherapy team will begin their testing on Friday with a general anaesthetic. Its quite a large area that needs radiotherapy but this will help prevent relapse in the primary site. We begin radiotherpay a week on Monday. 12 sessions under sedation as outpatient. The long term side effects are quite upsetting but what choice do we have? To give Jamie the best chance in life, he has to have it.

Jamie really enjoyed travelling on the train but has been upset as we didn't see Alvin the chipmunk today!!

So much has happened in the last few days that it's difficult to get our head around the fact that we are actually here but things will calm down soon I hope!!

Love to you all and a massive thank you for helping us get here!

Tuesday, March 9, 2010


We are here!!! We were met by a guy who is a friend of John's brother. He has networks with the church and there are loads of people rallying around to help us! He sent out an email to ask if anyone would put us up for a few days and he said within 20 mins he had a reply!!! At the moment we are staying with the Director of the University!! Basically we are in a leafy suburb in millionaire’s row!!! His house is truly amazing and we have an amazing room! The church network had managed to get a cot, baby bath, highchair, car seat, toys etc... Overwhelming!!!! So here we are stateside and I'm so glad we are here. Tomorrow we have an appointment with Dr Maris at CHOP!!

We also have the American military sorting us out with a house and again requests have been put out for furnishing it as it is unfurnished. It will be in a place called Willow Grove, about 50 mins drive from CHOP. They nickname it Bucks County as there is a lot of money here!! Oh and an amazing shopping mall apparently!!!

People are getting us a mobile [oops, I mean cell phone!] and they are trying to get us a vehicle for the whole time, like a lease car! All the insurance will be sorted!! So, I have just made an American coffee and earlier we saw a chipmunk in the garden. Jamie was beside himself as he loves Alvin and the Chipmunks!! He thinks that this is the real Alvin although how we are going to get it to sing, I do not know!!!!

The weather here is beautiful, they had loads of snow about 2 weeks ago but now it is mild and sunny and we are surrounded by beautiful trees with mansions nestled in amongst them. We could get used to this!!!

The journey here was made less stressful by the staff at Frankfurt. Basically we were escorted and transported everywhere; I think it took 40 mins from check in to get through control and security. They just waved us through!! We were first on the aircraft and had a row of seats behind as well that were kept free! If we had known this I would not have paid for Poppy's seat but we didn't know!! The staff couldn't do enough to help us! We had complimentary wine and they wouldn't let us pay for Jamie's snacks! The air steward let Jamie sit in her seat for landing and she had tears in her eyes as she welcomed Jamie to America!

Finally, we were allowed into the cockpit at the end of the flight!! I almost broke down then but held it together as Jamie got moody and brought me back to reality!!! The air steward then fast tracked us through immigration so it was quite nice to see everyone else queuing and we just walked past!!!!!

Not too jet lagged considering we left our house at 6.00 am having had 2 hours sleep and arrived at the house about 10.00pm CET! Went to bed at 9.30pm [3.30am in Germany] and slept through until 5.00am. Both children are having a morning rest, it's 10.00am here and Jamie has already said "I like it here, I don't want to go home. We are not going home are we?!!" Hopefully his behaviour will improve now!!!

I can't believe we are here, everyone is really friendly, even the staff at the airport in Philly!! So for those of you who are thinking of visiting Philly, don't hesitate, it's fantastic!!!!!!!!!!!!!!!!!!! New York is only a 3 hour drive away and Boston is being recommended all the time!!

We will find out tomorrow exactly when Jamie will start radiotherapy and the hospital is highly thought of here. Will let you know how it all goes!!!

All our love

We Made It!

We are in Philly!!!!!

Some amazing people have helped us in the few hours that we have been here. Airport stuff went well, they escorted us through everywhere. No queuing, rides on a buggy etc.. Flight was good, we were well looked after, complimentary wine and snacks for Jamie. Hard work though with Jamie and Poppy.

Off to bed Now!!!!!

Philadelphia, Here we come.....,

After 12 weeks of fundraising, the kindness of strangers (many of whom are now friends) and some gruelling treatment for Jamie, the Inglis family left for Philadelphia on Monday 7th March 2010..........