PART 1
Way back during our first few days at the Ronald McDonald House, we met a lovely American family. Their son is a few months older than Jamie and their daughter is 7. Their daughter was having treatment at CHOP [nothing to do with cancer] and we met up with them again during their follow up visit to CHOP. We decided it would be nice to meet outside of the hospital environment and so with the beautiful weather and Jamie's break in treatment, the timing was perfect for us to get together on Saturday at a theme park!
Our roadtrip started last Friday, so we quickly booked a place to stay, packed the car [again], we checked and double checked that we had all medication and supplies for line flushing and dressing changes and... headed towards the mountains of Pennsylvania. It took about 4 hours as there were roadworks towards the end of the journey. The scenery was beautiful until we hit the traffic jam. As we slowed down, Jamie could see things flying around and asked what they were. John and I said "O'h, probably supersized flies!!" The supersized flies suddenly seemed to multiply and as we came to a halt, the massive truck alongside us was a bee truck with some very angry bees escaping and swarming all around! Of course, we seemed to be stuck alongside this truck for ages and it was just horrible. The photos we took are not that clear but these bees were everywhere!
Our friend, Michelle, called us on the cell phone to make sure that we were still coming and her children were so excited! Jamie spoke with them on the phone and asked if they were going to the fun park with him!
On arriving in Danville [your destination is on the right!!] we couldn't find the place we were staying in. The Sat Nav kept taking us to the river!!! Telephoned the Inn and they gave us better directions! Jamie and Poppy had been so amazing in the car but they needed fresh air!
By the time we were settled and ready for a walk into the small town, daylight was already fading. The sunsets here in USA are beautiful but very quick!!! Jamie enjoyed the guns in the Memorial Park and playing hide and seek whilst I was listening to an American Amateur Dramatic group rehearsing some Shakespeare in the Park at dusk! Jamie was happy to see all the fireflies again and on our return to the Inn [which was just in front of the biggest hospitals in that region!] we thought we would have a meal at the restaurant. We sat outside and Jamie was a star! At first Jamie was not tempted by anything on the menu and decided that he wouldn't have anything. He sat and thought and said "I have an idea, how about I have pasta with cheese melted all over it?" Great plan but not on the menu. We asked and they provided Jamie with a huge plateful of spaghetti and melted Mozarella! He was so thrilled and just said "Wow" with a shriek when he saw it! He told the waitress "It's the best pasta I have ever had!"
I know that we recount Jamie's eating habits as though it is the most important thing but truly it is!!! To see the joy on his face at having something that he has finally managed to decide to eat and enjoy is just wonderful. He ate what he could and we boxed up the rest for him to enjoy for breakfast!!! Mummy and Daddy's meal was great too, as was the wine and the fact that Poppy slept throughout the whole meal! This was one of the best evenings in a long time!
Saturday morning was very hot and sunny - after the effects of the air con in the rooms, walking outside was like walking into an oven. I did panick a bit at the fact that we were all going to be out in the heat all day. When Jamie is on Accutane, he is not to be exposed to direct sunlight but we knew there was going to be lots of trees and shade in the theme park.
Jamie's morning had started as per usual...digging his heels in about taking the Accutane, getting very cross about something which he wouldn't tell us why or what it was about. Constant distraction techniques so as to delay the Accutane. The distraction techniques were based around him eating "After I have finished my pasta then I'll have more pasta before my accutane!!" If we didn't have plans and had 2 hours to spare then this would have been an option. Still, I really do not want to use food in our battles as his appetite is getting so much better! Luckily, Michelle and her family had been held up in traffic so we had golden minutes to get the medicine in before we could enjoy the rest of the day!
Their knock on our door was a surprise for Jamie, he didn't know where we were actually meeting and his smile as the 2 children came in and greeted us was lovely! Michelle showed me her wedding album, they were married last year, at the place we were staying in. Once all the 'mwoahs' were out of the way and gift of strawberries put in our fridge, we set off!!!!
What a wonderful place the theme park was. Nestled in between the hills with loads of shade and trees!!! No entry or parking fees and the rides were 75c each. Bigger rides were approx $1.50. Jamie loved the Mad Hatters Tea Cups and I have to say, they were pretty fast for a Tea Cup ride! I think Jamie went on these 3 times!! It all got a bit much for Jamie as he was too excited to have a sleep so poor Maria and Steven [the familes 2 children] ended up doing what Jamie wanted to go on. They were so understanding as were their parents!
We left the park at 7.30pm, totally worn out and hot!!! We couldn't believe how after our short ride back to the Inn, with Jamie sleeping, he suddenly had loads of energy in the evening!
I know that Michelle will be reading this so thank you once again for a wonderful time and yes, when we go back, we'll meet again!!
On Sunday we moved on to another town to visit a family who had helped us through the Travis Manion Foundation. This I will save for another blog update as out of respect they need a piece dedicated to them. Their son, a Sgt in the US Army [a medic in the 82nd Airborne] was killed in action in Iraq, in 2004. What they have done and continue to do is inspirational.
Today, it is raining but we are all enjoying just being together. Jamie, who is coming to the end of this 2nd cycle of Accutane, is having less and less of the mood swings and is chirpy, cheeky and happy!!! We think he is putting on weight as 2 pairs of trousers now stay up on their own! He is so proud of this!! His appetite continues to improve and he does things to the extreme! It's a bit like the famous book by Eric Carle 'The Very Hungry Caterpillar!!! On Tuesday he munched his way through 4 bowls of strawberries and cream and on Wednesday morning for breakfast he ate almost 4 whole oranges [well sucked the juice out of them!!] I know that we are encouraging him with the oranges to help with absorption of food but rather over the top, don't you think?! We took a photo as evidence as we found this amusing!!!
We do read any comments that are left on here so please feel free to leave messages for Jamie or comments. Once I've changed my password [forgotten it again!] I will acknowledge any comments!!! We would love to hear from our friends in the German Community who are still following Jamie's appeal.
The fundraising is continuing. We have just learned that a lady called Michelle Leonard, won a competiton on TV and has donated her winnings of €5,000 [euro's] to Jamie's appeal!!!!! Michelle, wherever you are and if you are reading this, a MASSIVE THANK YOU from us all in Philadelphia!!
Bye for now!!
Love from us all in wet, miserable Philadelphia!!
Monday, June 14, 2010
Thursday, June 3, 2010
A bit of well deserved time off for Jamie!
It has been a holiday weekend here, as the Americans celebrate Memorial Day with stunning weather to match the holiday mood! Jamie's Godfather flew out for a brief visit and we all had a great time. We invited Henry and Barbara round for a bar b que but Jamie got really tired so spent most of the afternoon asleep in bed! Jamie is coping very well with the Accutane this time...it still takes a lot of patience to get the Accutane in him but we haven't had too many mood swings compared to the first cycle of it.
Tom has seen first hand though how quickly things can change with Jamie! I apologise Tom if it got stressful at times but he knows that just because Jamie is ill, we still have to try and maintain boundaries for Jamie. A very hard balancing act!
On Sunday we took the train into Philadelphia to show Tom the sights of the city. The weather was amazing and we all had a great day. We ended the day by discovering an Irish bar! We sat outside and enjoyed a couple of relaxing drinks and reminiscing about the good old days! Whilst there we saw one of Jamie's nurses who stopped and had a chat with us. A few minutes later the waitress came back with a round of drinks saying that they were from our friend [Jamie's nurse!] Thank you Preetha, it was a lovely gesture and one which we all enjoyed!!
We have lots of photos from this day to add!
Tom's visit went by very quickly and on his last day with us we decided to visit the local Zoo. Put it this way, it was advertised as a Zoo but on entering an industrial estate and seeing an office building with the zoo logo, we thought that we had come across the business office. I jokingly said that the zoo was probably in the hangar next to the office...I wasn't joking!!! What they called a zoo was a hangar with some insects in! We decided not to pay the $9.00 and view this! How very strange!!!
We have a complete break from treatment and hospital appointments and are planning to chill and relax and discover our local area.
Jamie's appetite is making us laugh at the moment. We all know that he goes through phases...this time we are on hot dogs for breakfast, lunch, dinner, snack!! He is also trying lots of different cereals and is drinking lots of milk and water. Jamie is also enjoying fresh oranges...these are also Poppy's favourite and she shouts and screams with delight when she sees the oranges!!!
Food shopping is a hit with Jamie as he likes to talk about the different foods and where they come from. Poppy enjoys sitting in the shopping carts and everyone was laughing at her yesterday as I had to pad the back of the seat with a thick blanket because she gets so excited and thrashes and bumps herself up and down!!!! Had to keep her away from the oranges though as she would have tried to have got out!!!!
With temperatures of 100F, the air con is on all the time but I am not complaining!
Must go now as Jamie is on his third helping of cereal and he needs supervising!!
Love to you all and photos will be on soon!
The Inglis Family
Tom has seen first hand though how quickly things can change with Jamie! I apologise Tom if it got stressful at times but he knows that just because Jamie is ill, we still have to try and maintain boundaries for Jamie. A very hard balancing act!
On Sunday we took the train into Philadelphia to show Tom the sights of the city. The weather was amazing and we all had a great day. We ended the day by discovering an Irish bar! We sat outside and enjoyed a couple of relaxing drinks and reminiscing about the good old days! Whilst there we saw one of Jamie's nurses who stopped and had a chat with us. A few minutes later the waitress came back with a round of drinks saying that they were from our friend [Jamie's nurse!] Thank you Preetha, it was a lovely gesture and one which we all enjoyed!!
We have lots of photos from this day to add!
Tom's visit went by very quickly and on his last day with us we decided to visit the local Zoo. Put it this way, it was advertised as a Zoo but on entering an industrial estate and seeing an office building with the zoo logo, we thought that we had come across the business office. I jokingly said that the zoo was probably in the hangar next to the office...I wasn't joking!!! What they called a zoo was a hangar with some insects in! We decided not to pay the $9.00 and view this! How very strange!!!
We have a complete break from treatment and hospital appointments and are planning to chill and relax and discover our local area.
Jamie's appetite is making us laugh at the moment. We all know that he goes through phases...this time we are on hot dogs for breakfast, lunch, dinner, snack!! He is also trying lots of different cereals and is drinking lots of milk and water. Jamie is also enjoying fresh oranges...these are also Poppy's favourite and she shouts and screams with delight when she sees the oranges!!!
Food shopping is a hit with Jamie as he likes to talk about the different foods and where they come from. Poppy enjoys sitting in the shopping carts and everyone was laughing at her yesterday as I had to pad the back of the seat with a thick blanket because she gets so excited and thrashes and bumps herself up and down!!!! Had to keep her away from the oranges though as she would have tried to have got out!!!!
With temperatures of 100F, the air con is on all the time but I am not complaining!
Must go now as Jamie is on his third helping of cereal and he needs supervising!!
Love to you all and photos will be on soon!
The Inglis Family
Tuesday, May 25, 2010
Completion of Round 2
This proved to be very difficult for Jamie. After the problems of Thursday, we were experiencing different problems on Friday afternoon with Blood pressure. Basically his blood pressure was too low and could not be stabilised. His lips had no colour in them but blood and platelets given and things seemed a bit better. John was taking over from me and when I thought things were okay for me to leave I left to go the Ronald McDonald House. 10 minutes after sitting down and thinking about Jamie, I had a call to say that Jamie was in intensive care.
I rushed straight back to the hospital, collected the things from the room [we had to pack the room up too] and a nurse took me up to ICU. Jamie was fine to look at but the low blood pressure was causing concern. The antibody had to be STOPPED. He had managed 7 1/2 hours out of a 10 hour infusion. We were gutted that it had to be stopped but for Jamie's health it was the best thing.
Oncology suggested that they start the next infusion as planned on Saturday but 2 hours before the IL2 and for over 20 hours instead of 10. This seemed to work. Did he tolerate this well??? If you can call screaming with pain as his mouth and face began swelling and going crazy, then yes, he did tolerate it well without too many blood pressure issues.
It's been a long weekend up here in ICU with Jamie's strength and character the most difficult to deal with! At the moment he is very swollen and has so much fluid in him but he has managed to complete the IL2 and ch.1418 together!! Pheww!! It was a bumpy ride and at one point we thought about taking him off this programme completely. Seeing him in so much distress was awful but now things are improving and he should be going down to his onco unit later today.
WHAT A STAR!!!!
Bye for now...
I rushed straight back to the hospital, collected the things from the room [we had to pack the room up too] and a nurse took me up to ICU. Jamie was fine to look at but the low blood pressure was causing concern. The antibody had to be STOPPED. He had managed 7 1/2 hours out of a 10 hour infusion. We were gutted that it had to be stopped but for Jamie's health it was the best thing.
Oncology suggested that they start the next infusion as planned on Saturday but 2 hours before the IL2 and for over 20 hours instead of 10. This seemed to work. Did he tolerate this well??? If you can call screaming with pain as his mouth and face began swelling and going crazy, then yes, he did tolerate it well without too many blood pressure issues.
It's been a long weekend up here in ICU with Jamie's strength and character the most difficult to deal with! At the moment he is very swollen and has so much fluid in him but he has managed to complete the IL2 and ch.1418 together!! Pheww!! It was a bumpy ride and at one point we thought about taking him off this programme completely. Seeing him in so much distress was awful but now things are improving and he should be going down to his onco unit later today.
WHAT A STAR!!!!
Bye for now...
Day 1 - Second Part of Round 2
THURSDAY 20th MAY 2010
IL2 and ch.14.18 antibody!
So the gruesome twosome are going in as I type. We have been told over and over again how this is the worst combination and to prepare ourselves for a bumpy ride.
The IL2 infusion began first at about 9.00am. I had been up since 6.30am with Jamie who asked "Mummy, can I order now, is it open?" This is the room service and on his agenda to day was eggs, sausages with onions and green pepper, followed by French Toast. Suffice to say he had a forkful of each and that was it! He got fed up with it and moved on to the lunch menu of garlic bread and tomato soup. We had a quick telling the time lesson so that he could see we could not order the lunch just yet!!!
All the other meds were done, one of them orally which Jamie fought about. In the end, I had to leave the room and then he took it with his nurse, Laura. Laura incidentally has worked in the UK in the John Radcliffe in Oxford [my hometown and place of birth] and has looked after some of the Neuroblastoma patients that we are in contact with via facebook! Very small world!!!
There seemed to be a delay with the 14.18 antibody arriving ~ we were later told that pharmacy had wrong info and had prepared a dose which was too small. OOPS!! Back it went and we finally kicked off at 1.00pm.
On going for a coffee I caught up with a lovely family whose Grandmother and friend are from Scotland with very broad accents!! We had been chatting at the weekend where I learned that her Grandson was admitted 3 weeks ago. After an initial diagnosis of growing pains from family doctor it turned out to be a rare cancer which had spread everywhere, terminal and weeks to live. Aged 17, he passed away this morning. The pain on their faces was unbearable. All I could do was hug them and shed my own tears for the hell that they have all been going through. How can something so bad grow so quickly and silently? Well we know about that, don't we.
This is what happens when you are thrown into this world. Families share their most desperate and private times as a form of mutual understanding but in such a dignified manner. Unfortunately not all the stories have a happy ending.
Back to our fight for a happy ending...
Sleep induced Benadryl meant for a fairly event free morning and early afternoon. I even managed time to read!!!
John and Poppy walked to the hospital in the beautiful sunshine and warm temperatures. Apparently there are 2 movies being filmed in Philadelphia at the moment and the Art Museum Steps, famous in Rocky movies, maybe being used again? Very posh set up with glass type conservatory/marquee thing. Could be graduation of course! I saw lots of graduates at the weekend, heading off for their ceremonies. It brought back very happy memories!
Poppy was so pleased to see me and Jamie! Jamie was awake but wanted to show his daddy his nutritional drinks that he is trying and very proud of! We are on such a mission to beef him up because he and we do not want him to have a feeding tube. Weight crept up very slowly this week. Any weight gain though is good though?
I did laugh to myself as on the nutrition tray were 2 small pots of coloured 'icky, sticky stuff.' One was an artificial bright red liquid and the other dark brown. I thought that the chocolate one was a nutritional substance to be added to full fat milk. When I asked the dietitian what it was she told me that it was Hershey's chocolate syrup! Hum mm, we want calories and fat but a few vitamins and minerals wouldn't go amiss! Chocolate syrup!!!!! O'h well, we are in America!!! Jamie didn't like it anyway!!!!!!
AFTERNOON:
Things were going well, Poppy was playing, John and I were keeping a watchful eye over Jamie whilst catching up with emails. Jamie continued to sleep, all vital signs were good. John went out for a run [think he secretly likes the idea of running up those Rocky steps!!] and then the excitement began. It went a little something like this...
1. Poppy pooed, I gloved up, trying to contain a 10 month old from rolling in her own faeces
2. Jamie wakes, screaming, clutching his throat
3. In calm soothing voice mummy says above the din "It's OK, Mummy's here, where does it hurt, are you in pain?" What utterly stupid questions when the poor boy is holding his throat and screaming. I simultaneously stretch over to press emergency button [with poo free finger], whilst holding Poppy with one hand to stop her rolling off the sofa bed
4. Couldn't hear call being answered but they could hear the commotion
5. Keep reassuring Jamie, complete nappy change in record time, gloves off and strap the ever so clean [???] Poppy in pushchair
6. Rush over to Jamie's bed, who I fear is going to strangle himself as he is holding his throat so tight. I try quickly to find out if his throat is sore, difficulty in swallowing [risk of allergic reaction to the 14.18].
7. Nurses and Dr's come in and administer more drugs but Jamie continues fighting and screaming saying "Get it out" [he feels as though something is stuck]
8. Eventually he calms and says "I just want to cuddle my mummy!"
9. Phew...all over for now
10. Both children go off to sleep
So we don't know what tomorrow [Friday] will bring...it could be worse, better or the same...nobody knows....
Over and out
XXXXXXXXXX
IL2 and ch.14.18 antibody!
So the gruesome twosome are going in as I type. We have been told over and over again how this is the worst combination and to prepare ourselves for a bumpy ride.
The IL2 infusion began first at about 9.00am. I had been up since 6.30am with Jamie who asked "Mummy, can I order now, is it open?" This is the room service and on his agenda to day was eggs, sausages with onions and green pepper, followed by French Toast. Suffice to say he had a forkful of each and that was it! He got fed up with it and moved on to the lunch menu of garlic bread and tomato soup. We had a quick telling the time lesson so that he could see we could not order the lunch just yet!!!
All the other meds were done, one of them orally which Jamie fought about. In the end, I had to leave the room and then he took it with his nurse, Laura. Laura incidentally has worked in the UK in the John Radcliffe in Oxford [my hometown and place of birth] and has looked after some of the Neuroblastoma patients that we are in contact with via facebook! Very small world!!!
There seemed to be a delay with the 14.18 antibody arriving ~ we were later told that pharmacy had wrong info and had prepared a dose which was too small. OOPS!! Back it went and we finally kicked off at 1.00pm.
On going for a coffee I caught up with a lovely family whose Grandmother and friend are from Scotland with very broad accents!! We had been chatting at the weekend where I learned that her Grandson was admitted 3 weeks ago. After an initial diagnosis of growing pains from family doctor it turned out to be a rare cancer which had spread everywhere, terminal and weeks to live. Aged 17, he passed away this morning. The pain on their faces was unbearable. All I could do was hug them and shed my own tears for the hell that they have all been going through. How can something so bad grow so quickly and silently? Well we know about that, don't we.
This is what happens when you are thrown into this world. Families share their most desperate and private times as a form of mutual understanding but in such a dignified manner. Unfortunately not all the stories have a happy ending.
Back to our fight for a happy ending...
Sleep induced Benadryl meant for a fairly event free morning and early afternoon. I even managed time to read!!!
John and Poppy walked to the hospital in the beautiful sunshine and warm temperatures. Apparently there are 2 movies being filmed in Philadelphia at the moment and the Art Museum Steps, famous in Rocky movies, maybe being used again? Very posh set up with glass type conservatory/marquee thing. Could be graduation of course! I saw lots of graduates at the weekend, heading off for their ceremonies. It brought back very happy memories!
Poppy was so pleased to see me and Jamie! Jamie was awake but wanted to show his daddy his nutritional drinks that he is trying and very proud of! We are on such a mission to beef him up because he and we do not want him to have a feeding tube. Weight crept up very slowly this week. Any weight gain though is good though?
I did laugh to myself as on the nutrition tray were 2 small pots of coloured 'icky, sticky stuff.' One was an artificial bright red liquid and the other dark brown. I thought that the chocolate one was a nutritional substance to be added to full fat milk. When I asked the dietitian what it was she told me that it was Hershey's chocolate syrup! Hum mm, we want calories and fat but a few vitamins and minerals wouldn't go amiss! Chocolate syrup!!!!! O'h well, we are in America!!! Jamie didn't like it anyway!!!!!!
AFTERNOON:
Things were going well, Poppy was playing, John and I were keeping a watchful eye over Jamie whilst catching up with emails. Jamie continued to sleep, all vital signs were good. John went out for a run [think he secretly likes the idea of running up those Rocky steps!!] and then the excitement began. It went a little something like this...
1. Poppy pooed, I gloved up, trying to contain a 10 month old from rolling in her own faeces
2. Jamie wakes, screaming, clutching his throat
3. In calm soothing voice mummy says above the din "It's OK, Mummy's here, where does it hurt, are you in pain?" What utterly stupid questions when the poor boy is holding his throat and screaming. I simultaneously stretch over to press emergency button [with poo free finger], whilst holding Poppy with one hand to stop her rolling off the sofa bed
4. Couldn't hear call being answered but they could hear the commotion
5. Keep reassuring Jamie, complete nappy change in record time, gloves off and strap the ever so clean [???] Poppy in pushchair
6. Rush over to Jamie's bed, who I fear is going to strangle himself as he is holding his throat so tight. I try quickly to find out if his throat is sore, difficulty in swallowing [risk of allergic reaction to the 14.18].
7. Nurses and Dr's come in and administer more drugs but Jamie continues fighting and screaming saying "Get it out" [he feels as though something is stuck]
8. Eventually he calms and says "I just want to cuddle my mummy!"
9. Phew...all over for now
10. Both children go off to sleep
So we don't know what tomorrow [Friday] will bring...it could be worse, better or the same...nobody knows....
Over and out
XXXXXXXXXX
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