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...
Tuesday, May 25, 2010
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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