Jamie's nurse was excellent at explaining everything that she was doing and going to be doing. She very quickly appreciated that this was a special moment for us and that we weren't a mad family who get excited about a bottle of medicine! Ok we are a mad family and we did get excited by the bottle of medicine!
At 10.00am, the nurse brought in the bottle that has cost so much money. I looked at it and saw those all important letters and numbers - ch14.18 and I could have cried.
I thought back to the stresses of the past few months and all the wonderful people we have met along the way. The wonderful charity nights that we attended and the generous donations people have made had all come together for this moment. Thousands of miles away from home, family and friends, Jamie was about to start what we HOPED would be, his final phase of treatment to eradicate this thing forever. Just over a year ago, as newly diagnosed, we had began a somewhat tentative 'look' at other options, with this being one that stuck in our minds.
As the infusion started I reminded Jamie what they were for. We think of it [the antibodies] as being like 'Iron Man' who flies around the body to find baby blastoma. When he finds them, he lands on top of them and blows them up! Jamie is happy with this very simplistic approach and totally understands what is going on.
He was shown the Mighty Morphine machine and with the help of his pain chart could tell us when he needed to press the button. The morphine was going in automatically but he could give it another push when needed.
Jamie became very sleepy quite quickly due to the Benadryl. The antibody infusion was going to take 10 hours, 12 hours in total with the final flush. Half way through the first day, I noticed a small rash appearing on the back of his head. Drs and nurses monitored this and then later on in the afternoon, Jamie began complaining of pain in his tummy and back. These are both likely side effects. He pushed the morphine button and controlled the pain really well.
By 8.15pm the infusion was complete and Jamie had got through the first day!! The Drs thought he had coped really well but we still had concerns about the rash which had now gone lumpy with open pores. Jamie also developed a cough towards the end of the infusion and at 11.00pm was coughing so much that he was sick. He had more morphine and Benadryl and went to sleep.
He had a relatively good night with a few coughing fits. This is also attributed to the antibody.
Tuesday, April 27, 2010
Building up to the big one!
Mission complete, well almost!!! This is a novel in the making as this entry is so long but we want you to share with us that very special moment of starting the therapy and Jamie's progress during his first round of ch14.18 antibody.This is what your hard work has achieved for us.
There is so much to explain about what has happened during the past 5 days that none of this may be coherent or make that much sense!! I apologise!!!
I will try to start from the beginning, always a good option! Jamie was finally admitted for the 1st round of antibody treatment on Weds evening. We spent the afternoon in clinic getting labs done etc and also met up with a wonderful family who we met in our first week at the Ronald McDonald House. They were back in CHOP for an appointment and Jamie had so enjoyed playing with their children. It was so good to see them as they are genuine, kind people but unfortunately Jamie was in a really bad mood! After about 15 minutes he had become so tired and over excited that when I said "no" to a request [no time for the reasoning!] he kicked and scratched and screamed. People started looking but then I thought "hey, wait a minute, this child has had to put up with so much!"
So, Michelle and Justin, if you are reading this...I'm sorry that our rendezvous was cut short!!!
The room that Jamie had was fantastic, in fact the whole unit is amazing. How can I explain this...well we have moved to a totally different system of care and facilities. Not better - just different and it takes a bit of getting used to. Jamie's nurses are also responsible for all his monitoring and administration of drugs and they provide round the clock care. They are never out of the room!! [That is no criticism by the way!!]
Once admitted and settled we had a tour of the unit. Wonderful facilities for the children which includes a well resourced and equipped play room with Jamie having his own Child Life Specialist who comes into his room each day to do activities with Jamie and even Poppy! They both did hand printing on his first morning!
The Ronald McDonald family lounge has all that you need to survive, coffee machines, large fridges and freezers and endless packets of Macaroni cheese to keep his Royal Highness Happy!!! Laundry facilities are an added bonus. Again, volunteers cook some evenings which leads on to the best bit...Room Service!! I kid you not... there is a booklet with everything there ranging from fajitas to hot dogs, burgers [I'll stay away from those, thank you very much!!] pasta, vegetables, stir fry, fries, breakfast things which you can order throughout the day!! You phone through when you want and it is delivered within 45 mins!! [Not free for mummy's though :(] On our first morning we ordered toast for Jamie and it wasn't enough and he kept saying "Can you phone it for me?!!"
Back to the first evening...Jamie had to be isolated because new admissions means that each child is swabbed to check for a particular virus. Until the results are through then your child remains in isolation. At least there are Play stations and computers in each room and enough space for Jamie to drive a fire truck in!! He was so excited to be here! A little bit of me was too but then the sick feeling kept taking over! He also loved his bed, one of those high tech paediatric beds with buttons and flashing lights so all in all very impressive until I saw or couldn't see, my bed! The brightly coloured sofa which I had thought considerate to mums and dads who want to chill if child is asleep, was actually 'The Bed!' I have to admit it was much more comfortable than I thought although I couldn't sleep on our first night here.
So Thurs morning dawned and I yawned...where had all the energy gone? I felt exhausted before this all began but Jamie was in good spirits until they began bringing in different medications to prep him. He eventually took what was needed and was so pleased with himself! It was from this point that the mutual admiration society was set up between Jamie and ANY Nurse that came in!! His Nurse for the day, Andrea, was fab. She adored Jamie, he adored her and so the story begins :)
There is so much to explain about what has happened during the past 5 days that none of this may be coherent or make that much sense!! I apologise!!!
I will try to start from the beginning, always a good option! Jamie was finally admitted for the 1st round of antibody treatment on Weds evening. We spent the afternoon in clinic getting labs done etc and also met up with a wonderful family who we met in our first week at the Ronald McDonald House. They were back in CHOP for an appointment and Jamie had so enjoyed playing with their children. It was so good to see them as they are genuine, kind people but unfortunately Jamie was in a really bad mood! After about 15 minutes he had become so tired and over excited that when I said "no" to a request [no time for the reasoning!] he kicked and scratched and screamed. People started looking but then I thought "hey, wait a minute, this child has had to put up with so much!"
So, Michelle and Justin, if you are reading this...I'm sorry that our rendezvous was cut short!!!
The room that Jamie had was fantastic, in fact the whole unit is amazing. How can I explain this...well we have moved to a totally different system of care and facilities. Not better - just different and it takes a bit of getting used to. Jamie's nurses are also responsible for all his monitoring and administration of drugs and they provide round the clock care. They are never out of the room!! [That is no criticism by the way!!]
Once admitted and settled we had a tour of the unit. Wonderful facilities for the children which includes a well resourced and equipped play room with Jamie having his own Child Life Specialist who comes into his room each day to do activities with Jamie and even Poppy! They both did hand printing on his first morning!
The Ronald McDonald family lounge has all that you need to survive, coffee machines, large fridges and freezers and endless packets of Macaroni cheese to keep his Royal Highness Happy!!! Laundry facilities are an added bonus. Again, volunteers cook some evenings which leads on to the best bit...Room Service!! I kid you not... there is a booklet with everything there ranging from fajitas to hot dogs, burgers [I'll stay away from those, thank you very much!!] pasta, vegetables, stir fry, fries, breakfast things which you can order throughout the day!! You phone through when you want and it is delivered within 45 mins!! [Not free for mummy's though :(] On our first morning we ordered toast for Jamie and it wasn't enough and he kept saying "Can you phone it for me?!!"
Back to the first evening...Jamie had to be isolated because new admissions means that each child is swabbed to check for a particular virus. Until the results are through then your child remains in isolation. At least there are Play stations and computers in each room and enough space for Jamie to drive a fire truck in!! He was so excited to be here! A little bit of me was too but then the sick feeling kept taking over! He also loved his bed, one of those high tech paediatric beds with buttons and flashing lights so all in all very impressive until I saw or couldn't see, my bed! The brightly coloured sofa which I had thought considerate to mums and dads who want to chill if child is asleep, was actually 'The Bed!' I have to admit it was much more comfortable than I thought although I couldn't sleep on our first night here.
So Thurs morning dawned and I yawned...where had all the energy gone? I felt exhausted before this all began but Jamie was in good spirits until they began bringing in different medications to prep him. He eventually took what was needed and was so pleased with himself! It was from this point that the mutual admiration society was set up between Jamie and ANY Nurse that came in!! His Nurse for the day, Andrea, was fab. She adored Jamie, he adored her and so the story begins :)
Tuesday, April 20, 2010
Good riddance Cancer!
Well the wait is finally over! For those of you who have not seen the facebook pages we had some fantastic news this week. Jamie's all over body scan revealed that there are NO hotspots! Jamie had to have a radioactive iodine injected into his IV line the day before the MIBG scan. This accumulates around any neuroblastoma cells thus showing up on the imagery as hotspots. In Jamie's case there was no take up of the iodine! This was the first result that we got back but we had an agonising 2 day wait to receive results from the bone marrow biopsy and aspirates.
During that time we came back to Bucks County [about an hour away] and at 10.00pm that night, realised that we had come away from CHOP without some important medication to protect Jamie's thyroid from the radioactive iodine! I telephoned our oncologist who happened to be on call that night and he assured us that to receive it the next day was not a problem. We went to bed feeling really cross with ourselves at the fact that we were going to have to make another trip to CHOP to collect the medication.
On Friday morning John was getting ready to head off without Jamie [surely not needed just to collect medication] when we had a call from the hospital asking us to bring Jamie in for a heart scan that afternoon. You can imagine what was going on in my head...was this their way of calling us in to discuss further results? Was there cancer in the bone marrow?
We called them back to put our minds at rest and they had the results ready from the bone marrow aspirates and biopsies. We could not believe the news when they told us that the bone marrow is free from cancer and there is no neuroblastoma left in the bones!! Me and Jamie were jumping up and down saying "Yeah, yeah, we've killed the angry cells!!" The Nurse Practioner could hear us all!!
The heart scan showed some tissue around the aeorta but his heart function is very good and they are not concerned!
As a treat for Jamie after having beaten this thing so far, we decided to take him on a 1920's locomotive in a town called New Hope. We saw some beautiful countryside on our drive there and when we arrived the town were having a medieval themed fair. Lots of people were dressed up, some more unusual than others!
Jamie enjoyed the train ride and had a great day but it was only on the way home that I thought how appropriate to have celebrated Jamie being cancer free by going to a town called New Hope! All this just before we all embark on the next phase of treatment!
Finally, for this update, we would like to express our thanks and gratitude to some special people who continue to work behind the scenes for Jamie's appeal. Wendy and Maxine work in the RAO's office in JHQ. They have been holding the Regimental account for Jamie's appeal and have done an amazing job. They have supported local fundraising events and Maxine is also organising a large music event to be held in Monchengladbach. From the Inglis family we say "Thank you!"
Maxine also translates our blog entries into German for us so that our local community [who have helped us so much] can also keep up to date with Jamie's progress. I know that this is really appreciated amongst our German community as one of Jamie's nurses from Dusseldorf commented on how great it was to have this page in German! Thanks Maxine!
Our last thanks for this page go to our blog administrators, Danni and Tristin who always give up their free time to post my lengthy updates! Danni gets excited about this as she says it's great being able to read all the news before anyone else!!!!!
More thanks are on their way in the next blog for more special people!
We had our training today for giving Jamie's injections known as GM -CSF. I gave Jamie his injection and it was the worst feeling ever but I did it. Jamie was very good with it but he did think Dr. Miller was coming out to America to give them to him!!!! I have to inject Jamie daily, leading up to the antibody treatment so I guess today has marked the beginning of the Immunotherapy. Getting very very edgy now about Thurs and how on earth Jamie is going to react to the antibodies. By the time the next update is on here we will be right in the middle of the first course. Keep thinking about Jamie, he really astounds us and deep down we know he can do this. We really do have New Hope...
Loads of Love
Vicky, John, Jamie and Poppy Inglis
XXXXXX
During that time we came back to Bucks County [about an hour away] and at 10.00pm that night, realised that we had come away from CHOP without some important medication to protect Jamie's thyroid from the radioactive iodine! I telephoned our oncologist who happened to be on call that night and he assured us that to receive it the next day was not a problem. We went to bed feeling really cross with ourselves at the fact that we were going to have to make another trip to CHOP to collect the medication.
On Friday morning John was getting ready to head off without Jamie [surely not needed just to collect medication] when we had a call from the hospital asking us to bring Jamie in for a heart scan that afternoon. You can imagine what was going on in my head...was this their way of calling us in to discuss further results? Was there cancer in the bone marrow?
We called them back to put our minds at rest and they had the results ready from the bone marrow aspirates and biopsies. We could not believe the news when they told us that the bone marrow is free from cancer and there is no neuroblastoma left in the bones!! Me and Jamie were jumping up and down saying "Yeah, yeah, we've killed the angry cells!!" The Nurse Practioner could hear us all!!
The heart scan showed some tissue around the aeorta but his heart function is very good and they are not concerned!
As a treat for Jamie after having beaten this thing so far, we decided to take him on a 1920's locomotive in a town called New Hope. We saw some beautiful countryside on our drive there and when we arrived the town were having a medieval themed fair. Lots of people were dressed up, some more unusual than others!
Jamie enjoyed the train ride and had a great day but it was only on the way home that I thought how appropriate to have celebrated Jamie being cancer free by going to a town called New Hope! All this just before we all embark on the next phase of treatment!
Finally, for this update, we would like to express our thanks and gratitude to some special people who continue to work behind the scenes for Jamie's appeal. Wendy and Maxine work in the RAO's office in JHQ. They have been holding the Regimental account for Jamie's appeal and have done an amazing job. They have supported local fundraising events and Maxine is also organising a large music event to be held in Monchengladbach. From the Inglis family we say "Thank you!"
Maxine also translates our blog entries into German for us so that our local community [who have helped us so much] can also keep up to date with Jamie's progress. I know that this is really appreciated amongst our German community as one of Jamie's nurses from Dusseldorf commented on how great it was to have this page in German! Thanks Maxine!
Our last thanks for this page go to our blog administrators, Danni and Tristin who always give up their free time to post my lengthy updates! Danni gets excited about this as she says it's great being able to read all the news before anyone else!!!!!
More thanks are on their way in the next blog for more special people!
We had our training today for giving Jamie's injections known as GM -CSF. I gave Jamie his injection and it was the worst feeling ever but I did it. Jamie was very good with it but he did think Dr. Miller was coming out to America to give them to him!!!! I have to inject Jamie daily, leading up to the antibody treatment so I guess today has marked the beginning of the Immunotherapy. Getting very very edgy now about Thurs and how on earth Jamie is going to react to the antibodies. By the time the next update is on here we will be right in the middle of the first course. Keep thinking about Jamie, he really astounds us and deep down we know he can do this. We really do have New Hope...
Loads of Love
Vicky, John, Jamie and Poppy Inglis
XXXXXX
Thursday, April 15, 2010
Waiting......
Just waiting...and waiting...for Jamie to come out of diagnostics. He has been under GA now for over 2 hours. There is so much testing to be done and I hope he is not in any pain from the bone marrow aspirates.
Some of the team from radiology were there and Jamie beamed his great big smile at them! One of the nurses took him off in search of more of his nurse buddies!!! Jamie was so pleased to stay at the RM House and see all of his friends!! The Rogers family [Stella Rogers] had their film crew out, following the next phase of anitbody treatment and the reporter said she would film us and pass it back to BFBS, Yorkshire and WDR in Germany! It was a very short piece about the support we have here, i.e. meeting and sharing stuff with other families in the RM House. We weren't really prepared to do it so as it was done off the cuff, there will be a lot of editing needed!! I should be used to this by now but it is still weird!!!
We got totally lost driving from Bucks County to Philli yesterday and ended up having to go back over the bridge into New Jersey. We basically knew where we needed to be but the sign did not give us the option once we had come off the highway! Arghh!! The sign posting is totally inadequate for novices like ourselves. I think Jamie has heard all the expletives that exist now!!! Woops! Still we were only 10 mins late for our hospital appointment!!!
We should have the results from all the tests by Friday so all we can do is wait and hope that everything is fine and that there are no Neuroblastoma cells. As they say at the Children's Hospital of Philadelphia; Hope Lives Here... Lets hope that Jamie is still smiling :o)
Some of the team from radiology were there and Jamie beamed his great big smile at them! One of the nurses took him off in search of more of his nurse buddies!!! Jamie was so pleased to stay at the RM House and see all of his friends!! The Rogers family [Stella Rogers] had their film crew out, following the next phase of anitbody treatment and the reporter said she would film us and pass it back to BFBS, Yorkshire and WDR in Germany! It was a very short piece about the support we have here, i.e. meeting and sharing stuff with other families in the RM House. We weren't really prepared to do it so as it was done off the cuff, there will be a lot of editing needed!! I should be used to this by now but it is still weird!!!
We got totally lost driving from Bucks County to Philli yesterday and ended up having to go back over the bridge into New Jersey. We basically knew where we needed to be but the sign did not give us the option once we had come off the highway! Arghh!! The sign posting is totally inadequate for novices like ourselves. I think Jamie has heard all the expletives that exist now!!! Woops! Still we were only 10 mins late for our hospital appointment!!!
We should have the results from all the tests by Friday so all we can do is wait and hope that everything is fine and that there are no Neuroblastoma cells. As they say at the Children's Hospital of Philadelphia; Hope Lives Here... Lets hope that Jamie is still smiling :o)
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