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
Tuesday, May 25, 2010
Thursday, May 13, 2010
Round 2 has started!
So day of admittance. It's always a waiting game for our room but yesterday was ridiculous. Our appointment in the onco clinic was at 2.00pm and we had to wait 8 hours for our room to be ready. 10.00pm last night we trudged into our room with the staff apologising over and over again. I wasn't cross with them, it is not their problem, the poor nurse from onco can't even go home until all her outpatients have been admitted so it was a long day for her too. To be homeless and entertaining 2 young children and trying to feed them etc...=STRESS! On the flip side, Jamie and Poppy were brilliant!
When we arrived yesterday to clinic, the NB nurse practitioner was being filmed for a documentary on how Alex's Lemonade Stand Charity have funded for Neuroblastoma practioners and what their role is [bloody brilliant role at that!!] and guess who they wanted to film...Jamie!!! Always the star bless him!! Honestly this charity are amazing. The Alex Scott Day hospital here for oncology has been funded by them. Please visit their website (http://www.alexslemonade.org/). I think there is an open day coming up soon which we are looking forward to.
Clinic went as usual, labs drawn, dressings changed, lines flushed and chatting with the team about Jamie's progress. Accutane...now there's a word, I guess each parent dealing with childhood cancer will have the same issues so even just on hearing the name of the drug my blood pressure starts to rise! If you have been following the blog and/or reading fb updates you will be aware that this week has been..AWFUL... for Jamie's behaviour.. I spoke with the team and they say that they hear this all too commonly when children are on this!! Wonderful, we will have a child with a split personality every 2 weeks for the next 6 months and this is more than just developmental!! This all sounds very down but I think we are all just worn out with these complete meltdowns! They have said that during the 2 week break from the drug, children's behaviour usually improves!!! Jamie is on his last dose for this cycle and has a break of 14 days
Linked to that, our NB nurse practitioner informed us of a new programme running at the end of May for pre-schoolers and parents dealing with cancer and its effects, in particular, challenging behaviours! Guess which family she thought of...us!! I think it's a 6 week course. When we saw the info for the parent group: "Gain confidence in managing challenging behaviours, including tantrums and not following directions" I wanted to re-phrase it like this
Gain a better understanding of schizophrenic obsessive compulsive disorder at 4 years old! I have coined a new term as I think this best explains what Jamie is going through [and the silently rocking parents in the background]!
Ok this is my dry sense of humour coming out and no disrespect is intended so please do not be offended by my use of these disorders in this context... I know that each of these is nothing to joke about.
Moving on... Jamie continues to eat little and often. Yesterday was Mac and Cheese with fresh spinach. Today, he doesn't want that, just the Mac and Cheese. I am meeting with the Nutrionalist again today to discuss other options such as high calorie powders that can be added to Jamie's milkshakes. They are also going to give him a high calorie tray with lots of tasters on. He is looking forward to this and we can find out what he would like. His tastes change daily though!
The IL2 is now going in as we speak and Jamie is having a sleep. The IL2 finishes on Monday and we have been told that these 4 days should be non eventful. After the 2 day break we have the antibody 14.18 combined with IL2 for 4 days. This is the hardest combination for side effects and pain.
Jamie's godfather, Tom, is coming out at the end of May for a long weekend. He will be our first visitor and Jamie is very excited. It works out well as Jamie will be in between treatment. We look forward to seeing you Tom!
Another Tom whom we need to mention is that of a fire officer here in Philli. His photo is included in our album. He heard of our situation and wanted to help, driving up with a friend one weekend to deliver a rug and a sofa. Jamie enjoyed trying on the fireman's hat and playing with the fire truck that they gave him. A few weeks later we had a call from him and he had a piece of furniture for the bedroom, a lamp, a huge TV, large coffee machine and a coffee table!! Thank you so much to Tom, the fireman!
Jamie has also made some new friends in the local pizza place! They make Carbonara especially for him [it's not on their menu] and he gets a free ice cream!!
It has been good to catch up with the other British families - we are all in at the same time although at different stages. Robyn Higgins is starting her FINAL round and Stella Rogers is on her 4th [I think]. Good luck to all 3 of you wonderful children as you continue your fight against Neuroblastoma.
Once again, thank you for reading this blog, Jamie knows that people are reading about him and has often said "Will you put that on the puter?" [refuses to say computer!]
Love to everyone that knows us!! We are missing you all and have felt a little homesick these past few days!
Soon I will post a link which is an interview with Jamie's oncologist, Dr. Maris. It gives you an insight as to what the immunotherapy antibody treatment is all about. Please take a look!
When we arrived yesterday to clinic, the NB nurse practitioner was being filmed for a documentary on how Alex's Lemonade Stand Charity have funded for Neuroblastoma practioners and what their role is [bloody brilliant role at that!!] and guess who they wanted to film...Jamie!!! Always the star bless him!! Honestly this charity are amazing. The Alex Scott Day hospital here for oncology has been funded by them. Please visit their website (http://www.alexslemonade.org/). I think there is an open day coming up soon which we are looking forward to.
Clinic went as usual, labs drawn, dressings changed, lines flushed and chatting with the team about Jamie's progress. Accutane...now there's a word, I guess each parent dealing with childhood cancer will have the same issues so even just on hearing the name of the drug my blood pressure starts to rise! If you have been following the blog and/or reading fb updates you will be aware that this week has been..AWFUL... for Jamie's behaviour.. I spoke with the team and they say that they hear this all too commonly when children are on this!! Wonderful, we will have a child with a split personality every 2 weeks for the next 6 months and this is more than just developmental!! This all sounds very down but I think we are all just worn out with these complete meltdowns! They have said that during the 2 week break from the drug, children's behaviour usually improves!!! Jamie is on his last dose for this cycle and has a break of 14 days
Linked to that, our NB nurse practitioner informed us of a new programme running at the end of May for pre-schoolers and parents dealing with cancer and its effects, in particular, challenging behaviours! Guess which family she thought of...us!! I think it's a 6 week course. When we saw the info for the parent group: "Gain confidence in managing challenging behaviours, including tantrums and not following directions" I wanted to re-phrase it like this
Gain a better understanding of schizophrenic obsessive compulsive disorder at 4 years old! I have coined a new term as I think this best explains what Jamie is going through [and the silently rocking parents in the background]!
Ok this is my dry sense of humour coming out and no disrespect is intended so please do not be offended by my use of these disorders in this context... I know that each of these is nothing to joke about.
Moving on... Jamie continues to eat little and often. Yesterday was Mac and Cheese with fresh spinach. Today, he doesn't want that, just the Mac and Cheese. I am meeting with the Nutrionalist again today to discuss other options such as high calorie powders that can be added to Jamie's milkshakes. They are also going to give him a high calorie tray with lots of tasters on. He is looking forward to this and we can find out what he would like. His tastes change daily though!
The IL2 is now going in as we speak and Jamie is having a sleep. The IL2 finishes on Monday and we have been told that these 4 days should be non eventful. After the 2 day break we have the antibody 14.18 combined with IL2 for 4 days. This is the hardest combination for side effects and pain.
Jamie's godfather, Tom, is coming out at the end of May for a long weekend. He will be our first visitor and Jamie is very excited. It works out well as Jamie will be in between treatment. We look forward to seeing you Tom!
Another Tom whom we need to mention is that of a fire officer here in Philli. His photo is included in our album. He heard of our situation and wanted to help, driving up with a friend one weekend to deliver a rug and a sofa. Jamie enjoyed trying on the fireman's hat and playing with the fire truck that they gave him. A few weeks later we had a call from him and he had a piece of furniture for the bedroom, a lamp, a huge TV, large coffee machine and a coffee table!! Thank you so much to Tom, the fireman!
Jamie has also made some new friends in the local pizza place! They make Carbonara especially for him [it's not on their menu] and he gets a free ice cream!!
It has been good to catch up with the other British families - we are all in at the same time although at different stages. Robyn Higgins is starting her FINAL round and Stella Rogers is on her 4th [I think]. Good luck to all 3 of you wonderful children as you continue your fight against Neuroblastoma.
Once again, thank you for reading this blog, Jamie knows that people are reading about him and has often said "Will you put that on the puter?" [refuses to say computer!]
Love to everyone that knows us!! We are missing you all and have felt a little homesick these past few days!
Soon I will post a link which is an interview with Jamie's oncologist, Dr. Maris. It gives you an insight as to what the immunotherapy antibody treatment is all about. Please take a look!
Wednesday, May 12, 2010
A quick update!
This is just a really brief update as I am busy packing for the next chapter!!!
Jamie has recovered ok from the shingles - the scabs are still there and Jamie keeps trying to pick them. Our success with the accutane was shortlived as Jamie decided when back at home that he didn't want to swallow them. He has come up with a way of taking them which means that each capsule sits in the side of his mouth for at least 15 mins to get it all soft. Multiply this by 3 capsules twice a day and you can see how our time is taken up!! Ohh and lets throw in the mega mood swings and tantrums for good measure which start the moment he wakes up. We get a break of 10 -15 minutes between each outburst so this week has been so challenging. For the first time in all of this, I woke up one morning to the screaming and just wanted to hide! Things will improve :)
Anyway, well done Jamie as the accutane is definately going in. One of the side effects of oral chemo is dry lips and dry skin. He has that all over his face and bottom, bless him. He is shedding his skin like a snake but I am just happy to see this as it means he is getting the dosage!
John has been doing the walk of shame around the estate on bulk rubbish days!! The stuff people throw out because they can't be bothered to clean it etc..or because the bar b que is only a coal one!!!!!! So, I've nicknamed John Steptoe and Son and we have had a laugh about that!!!! We have also found a thrift shop, recomended to us which has loads of furniture. I picked up a wooden cabinet for the living room for $19.00!!!!
Although we have been at the house this week in Bucks County, we haven't really done much because of Jamie's mood swings. We took him to the park one evening and have been out for walks. The weather here has got much colder again. We went from having the air con on in the house to putting the heating back on within 24 hours!!!!
We met a lovely family when out and about the other day in Target. They were really engaging with Jamie and Poppy and so we got talking. They went away and came back with a bag full of toys and a little outfit for Poppy and said that they would look up Jamie's appeal on the internet! They were so kind and their children were so polite. Thank you - Jamie has taken the snake everywhere!!!!!
We did have some concerns over Jamie's health when he came out of hospital but at the clinic, bloods were taken and everything is fine. So here we are getting ready to start round 2!!! OMG this is going so fast that I haven't had chance to compartmentalise all the stuff that has gone on since we arrived here. We are nervous again as round 2 is different. We start of for 4 days with the normal antibody [ch14.18] that he had in round 1. We then come out of hospital for 2 days and go back in again for 5 days [I think] where Jamie will receive a combination of antibody with a hormone called IL2. These when mixed together make this a particularly difficult round with the pain issue. Having seen and dealt with Jamie during his extreme pain with the shingles [horrific] I think we are ready now for what could be around the corner. In true Jamie style he says "I'm going in for more treatment at CHOP to stop the baby blastoma cells growing!!"
Jamie is trying new foods, we are having a real push on nutrition at the moment and really encouraging him. Jamie even asked "If you eat lots of good foods like vegetables and potatoes and spinach will it help me get better??!!"
We are in awe of how knowledgeable Jamie is ~ I was worrying about him starting school and having to go back a year ~ maybe he doesn't need to!! He might find it better to be with children of his own age.
I think the highlight for Jamie this week has been seeing his Nanny and Grandad on Skype!! They arranged to use the computer at my sister's house and he was chatting away to them!! Poppy even took her first small tentative steps on Skype with Daddy holding her!!! She also has her first tooth so life carries on doesn't it?
Ok off now to continue packing and to take Jamie to his surprise for all the hard work in taking his medication ~ the Zoo. We have been given free tickets so know that Jamie is going to have a wonderful time there!!
Thank you for reading!!
Jamie has recovered ok from the shingles - the scabs are still there and Jamie keeps trying to pick them. Our success with the accutane was shortlived as Jamie decided when back at home that he didn't want to swallow them. He has come up with a way of taking them which means that each capsule sits in the side of his mouth for at least 15 mins to get it all soft. Multiply this by 3 capsules twice a day and you can see how our time is taken up!! Ohh and lets throw in the mega mood swings and tantrums for good measure which start the moment he wakes up. We get a break of 10 -15 minutes between each outburst so this week has been so challenging. For the first time in all of this, I woke up one morning to the screaming and just wanted to hide! Things will improve :)
Anyway, well done Jamie as the accutane is definately going in. One of the side effects of oral chemo is dry lips and dry skin. He has that all over his face and bottom, bless him. He is shedding his skin like a snake but I am just happy to see this as it means he is getting the dosage!
John has been doing the walk of shame around the estate on bulk rubbish days!! The stuff people throw out because they can't be bothered to clean it etc..or because the bar b que is only a coal one!!!!!! So, I've nicknamed John Steptoe and Son and we have had a laugh about that!!!! We have also found a thrift shop, recomended to us which has loads of furniture. I picked up a wooden cabinet for the living room for $19.00!!!!
Although we have been at the house this week in Bucks County, we haven't really done much because of Jamie's mood swings. We took him to the park one evening and have been out for walks. The weather here has got much colder again. We went from having the air con on in the house to putting the heating back on within 24 hours!!!!
We met a lovely family when out and about the other day in Target. They were really engaging with Jamie and Poppy and so we got talking. They went away and came back with a bag full of toys and a little outfit for Poppy and said that they would look up Jamie's appeal on the internet! They were so kind and their children were so polite. Thank you - Jamie has taken the snake everywhere!!!!!
We did have some concerns over Jamie's health when he came out of hospital but at the clinic, bloods were taken and everything is fine. So here we are getting ready to start round 2!!! OMG this is going so fast that I haven't had chance to compartmentalise all the stuff that has gone on since we arrived here. We are nervous again as round 2 is different. We start of for 4 days with the normal antibody [ch14.18] that he had in round 1. We then come out of hospital for 2 days and go back in again for 5 days [I think] where Jamie will receive a combination of antibody with a hormone called IL2. These when mixed together make this a particularly difficult round with the pain issue. Having seen and dealt with Jamie during his extreme pain with the shingles [horrific] I think we are ready now for what could be around the corner. In true Jamie style he says "I'm going in for more treatment at CHOP to stop the baby blastoma cells growing!!"
Jamie is trying new foods, we are having a real push on nutrition at the moment and really encouraging him. Jamie even asked "If you eat lots of good foods like vegetables and potatoes and spinach will it help me get better??!!"
We are in awe of how knowledgeable Jamie is ~ I was worrying about him starting school and having to go back a year ~ maybe he doesn't need to!! He might find it better to be with children of his own age.
I think the highlight for Jamie this week has been seeing his Nanny and Grandad on Skype!! They arranged to use the computer at my sister's house and he was chatting away to them!! Poppy even took her first small tentative steps on Skype with Daddy holding her!!! She also has her first tooth so life carries on doesn't it?
Ok off now to continue packing and to take Jamie to his surprise for all the hard work in taking his medication ~ the Zoo. We have been given free tickets so know that Jamie is going to have a wonderful time there!!
Thank you for reading!!
Tuesday, April 27, 2010
Oooops!
We have met some lovely families here and the staff are wonderful. One Dr even brought in a bouncy thing to hang off the door for Poppy and some toys! Everyone is so welcoming. It's also nice to have banter with the Higgins family, whose daughter is in for round 4. It's hard to think that back in December we were in contact with each other and discussing Philadelphia or New York. We wish Robyn Higgins all the best as she prepares herself for her FINAL round of antibodies in 3 weeks time. It's going to be a strange place here when they leave!
I gave Lisa [Robyn's mum] a lift back form the hospital the other night.None of us realised until we got to the RM House that Lisa didn't have one of her bags. She phoned security and sure enough, one black bag was waiting to be collected - had been found in the car park. I gave Lisa a lift back down to the hospital so that she could be reunited with her bag.
When she checked her bag it appears that someone [ie, ME] had reversed over her bag as her laptop was broken and Tommy's game boy. OOPS! For an 11 year old boy, Tommy, you took the news very well! Sincere apologies to Lisa and Tommy. The thing was, none of us had realised we had reversed over anything! I just liken it to my man on the bonnet episode in Germany!! Long story, nothing rude at all!
I gave Lisa [Robyn's mum] a lift back form the hospital the other night.None of us realised until we got to the RM House that Lisa didn't have one of her bags. She phoned security and sure enough, one black bag was waiting to be collected - had been found in the car park. I gave Lisa a lift back down to the hospital so that she could be reunited with her bag.
When she checked her bag it appears that someone [ie, ME] had reversed over her bag as her laptop was broken and Tommy's game boy. OOPS! For an 11 year old boy, Tommy, you took the news very well! Sincere apologies to Lisa and Tommy. The thing was, none of us had realised we had reversed over anything! I just liken it to my man on the bonnet episode in Germany!! Long story, nothing rude at all!
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