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)
Thursday, April 15, 2010
Monday, April 12, 2010
Radiotherapy done - NEXT!
What an exhausting week we have all had!! Firstly, Jamie has now finished his radiotherapy and has coped remarkably well!! On his last session the nurses decorated his recovery room with Power Ranger pictures, streamers and a huge helium balloon. They also gave him a Transformer gift which was so kind of them! I think Jamie's character is infectious because wherever we go he just charms everyone!
So on the last day of radiotherapy we handed back the hire car which was only for 2 weeks. Thank you again Flo for that. A fantastic organisation called 'Alex's Lemonade Stand' offer support to families such as ours and they have organised a lease car for us for the duration of our stay! We pay the insurance which we have managed to reduce from the original quote of 1900 dollars! We met the volunteers from Alex's Lemonade Stand as they were cooking one evening at the RM House. All of these wonderful organisations start from something tragic like losing a child so to meet Jay, Alex's father was quite something. We would like to express our thanks to this wonderful organisation and to 'Wynne' the car company that have leased this to us! You have made our life here much easier!'
Jamie's blood counts are stabilised but his weight had dropped again last week. He is still eating fairly well and is trying new foods daily. We returned to New Jersey to our host family for 2 nights to get everything packed and organised for our house move to Bucks County. We were sad to leave and Jamie was too but we know that we will see them again. I do worry that Jamie has met so many people that he gets attached to and then we move again but at least we are now in our 'own home!' We arrived in Warminster [in the country] on Thurs pm and again we received wonderful help from the 'Travis Manion Foundation.(www.TravisManion.com)' Travis was a US Marine Officer killed in action a couple of years ago and his parents have set the Foundation up to help others. Tina, one of the volunteers and her family were there to greet us and had got the house furnished with secondhand furniture for us! There was a baby play centre for Poppy, a beautiful cot, a bed for Jamie, dining table, coffee table, sofa. Not only that but they gathered kitchen essentials and had a box of cupboard ingredients for us! We were then presented with a gift card from the Foundation to get whatever else we needed to make this homely! There is great cheap store here which sells everything but is good quality so we have managed to make this look like our own home! At the end of our time, this will all go back to the Foundation to help another family :)
The house here is great and the neighbours great too. Within 5 minutes of being here we had already met Matt and his family who even cut the grass for us and came round with a huge box of toys for Jamie and Poppy!! Another lady who lives at the end walked in and handed over some money to get us started. They said that they all arrived with nothing and want to help us!!! It was a bit overwhelming but we really feel settled here and I now have the confidence to drive!! We managed to get the Internet and cable sorted, they company came out on a Sunday and were so efficient. That just sums up America really! Efficient in everything EXCEPT road and sidewalk maintenance in Philli!!!! The pot holes are more like craters!!! OH and whilst I'm at it, what about the traffic lights. I am programmed to stop on a red but some Americans don't seem to know this, either that or they colour blind!!
Poppy was a little unwell last week with a cold and cough. This is still waking her up in the night but through the day she is fine. She is a little adventure chick and is happy wherever she goes!! Jamie has enjoyed visits to the park again and was so thrilled when yesterday at the park, a little boy asked Jamie to play with him on the slides. Now that I see Jamie playing with others, I can see just how small he is compared to others of his age. His growth has certainly been affected by all the stuff that has happened to him but hey, his father is not exactly six foot is he??!!!
So what next? Tomorrow we are back in Philli at CHOP for the MIBG substance to be injected, ready for the scan on Weds. Wednesday is a big day where Jamie will have all the diagnostics done, the same as when he was first diagnosed. Bone marrow aspirates will be taken to see if there are any cancer cells and the MIBG scan will be done to see if there are any hotspots. Jamie's MIBG scan revealed no hotspots in December but he hasn't had bone marrow taken since May 2009. This one is an anxious one but hopefully Jamie is still in remission and the final documents can then be signed ready for the antibodies to start next week. We are also now planning to have Jamie's tumour sent to CHOP as they are doing a new test for ALK. If a tumour is shown to have this ALK then the team here in CHOP have recently developed a new treatment to target Neuroblastoma, should a child relapse. Again it will cost to have the test done and then to ship the tumour over but the other families have done this and we have nothing to lose. We are doing everything for our beautiful boy and will continue to do so until this is gone forever!
Off now to feed Poppy as she is hungry, as ever!!!!!
Love to you all and thanks again for reading!
So on the last day of radiotherapy we handed back the hire car which was only for 2 weeks. Thank you again Flo for that. A fantastic organisation called 'Alex's Lemonade Stand' offer support to families such as ours and they have organised a lease car for us for the duration of our stay! We pay the insurance which we have managed to reduce from the original quote of 1900 dollars! We met the volunteers from Alex's Lemonade Stand as they were cooking one evening at the RM House. All of these wonderful organisations start from something tragic like losing a child so to meet Jay, Alex's father was quite something. We would like to express our thanks to this wonderful organisation and to 'Wynne' the car company that have leased this to us! You have made our life here much easier!'
Jamie's blood counts are stabilised but his weight had dropped again last week. He is still eating fairly well and is trying new foods daily. We returned to New Jersey to our host family for 2 nights to get everything packed and organised for our house move to Bucks County. We were sad to leave and Jamie was too but we know that we will see them again. I do worry that Jamie has met so many people that he gets attached to and then we move again but at least we are now in our 'own home!' We arrived in Warminster [in the country] on Thurs pm and again we received wonderful help from the 'Travis Manion Foundation.(www.TravisManion.com)' Travis was a US Marine Officer killed in action a couple of years ago and his parents have set the Foundation up to help others. Tina, one of the volunteers and her family were there to greet us and had got the house furnished with secondhand furniture for us! There was a baby play centre for Poppy, a beautiful cot, a bed for Jamie, dining table, coffee table, sofa. Not only that but they gathered kitchen essentials and had a box of cupboard ingredients for us! We were then presented with a gift card from the Foundation to get whatever else we needed to make this homely! There is great cheap store here which sells everything but is good quality so we have managed to make this look like our own home! At the end of our time, this will all go back to the Foundation to help another family :)
The house here is great and the neighbours great too. Within 5 minutes of being here we had already met Matt and his family who even cut the grass for us and came round with a huge box of toys for Jamie and Poppy!! Another lady who lives at the end walked in and handed over some money to get us started. They said that they all arrived with nothing and want to help us!!! It was a bit overwhelming but we really feel settled here and I now have the confidence to drive!! We managed to get the Internet and cable sorted, they company came out on a Sunday and were so efficient. That just sums up America really! Efficient in everything EXCEPT road and sidewalk maintenance in Philli!!!! The pot holes are more like craters!!! OH and whilst I'm at it, what about the traffic lights. I am programmed to stop on a red but some Americans don't seem to know this, either that or they colour blind!!
Poppy was a little unwell last week with a cold and cough. This is still waking her up in the night but through the day she is fine. She is a little adventure chick and is happy wherever she goes!! Jamie has enjoyed visits to the park again and was so thrilled when yesterday at the park, a little boy asked Jamie to play with him on the slides. Now that I see Jamie playing with others, I can see just how small he is compared to others of his age. His growth has certainly been affected by all the stuff that has happened to him but hey, his father is not exactly six foot is he??!!!
So what next? Tomorrow we are back in Philli at CHOP for the MIBG substance to be injected, ready for the scan on Weds. Wednesday is a big day where Jamie will have all the diagnostics done, the same as when he was first diagnosed. Bone marrow aspirates will be taken to see if there are any cancer cells and the MIBG scan will be done to see if there are any hotspots. Jamie's MIBG scan revealed no hotspots in December but he hasn't had bone marrow taken since May 2009. This one is an anxious one but hopefully Jamie is still in remission and the final documents can then be signed ready for the antibodies to start next week. We are also now planning to have Jamie's tumour sent to CHOP as they are doing a new test for ALK. If a tumour is shown to have this ALK then the team here in CHOP have recently developed a new treatment to target Neuroblastoma, should a child relapse. Again it will cost to have the test done and then to ship the tumour over but the other families have done this and we have nothing to lose. We are doing everything for our beautiful boy and will continue to do so until this is gone forever!
Off now to feed Poppy as she is hungry, as ever!!!!!
Love to you all and thanks again for reading!
Jamie's Easter
Another week passed by so quickly! We have been getting into a routine now with the radiotherapy but it finishes on Tuesday!! Jamie's behaviour has been challenging again at times but the hospital are going to give us some much needed help! We started the play therapy to support Jamie in eventually being able to take the oral chemo. The tablets are in capsule form with a gel like substance which is sensitive to light so knowing how long it takes him to do his usual medication, opening it up is not an option!! Tomorrow we are going to use sprinkles and water and have a go at swallowing! Jamie enjoyed the play session in the hospital and was introduced to 'Winston' who had a broviac line and a mouth where Jamie could put the play dough tablets!! There was concern that the radiotherapy was lowering his hg level and that he would need a blood transfusion but on checking, the level had gone up by itself so well done Jamie! Jamie also had his first MacDonalds Cheeseburger this week! They told us that his appetite would be suppressed during radiotherapy but we have no signs of that yet, thank goodness. He still looks painfully thin but I guess the weight gain will not show until all this is over.
Jamie has found it difficult coming round from the anaesthesia this week and has an intense period of screaming whilst cuddling me. He says he likes the dizzy medicine and wants it all the time!!!! Slightly worrying!! We have been given our treatment plan for the next few weeks and it's quite something. We questioned the start date for antibodies but things have got delayed a bit because of having radiotherapy and we now have to wait a week before the diagnostics can start. Dr. Maris has assured us that we are still within the time frame, they do in fact give 110 days but on day 100 all the paperwork has to be signed and completed. They also told us that it is giving Jamie the chance to be as strong and as fit as he can before antibodies start. True, he is in the best health since last year which brings me on to my next point.
On Thursday, it was a year ago that we heard the word Neuroblastoma and that our beautiful son had this ugly cancer. This is not the forum to talk about my personal feelings but this last year has been so very hard on Jamie and everyone involved but when I look at him now I am stunned by how he is getting through this. A poignant moment on Saturday when Jamie went to the 'Jesus is Alive' party at Henry and Barbara's Church was when Jamie was dancing in the aisle with his balloon to a song with the words 'He is Alive.' All I could think about was Jamie and that he is ALIVE and at the moment is having fun. We know that the next phase of treatment is going to be so tough but this is nearly the end. We are almost there!
The Ronald McDonald House were given free tickets for a family to enjoy the Ice Hockey game on Friday night. We expressed an interest [as Daddy's sport is Field Hockey!] and were given VIP passes to join a suite upstairs and watch the Flyers play Canada!! Jamie loved it! There were hot dogs, snacks, desert trolley, ice cream and a bar in each suite which hosts about 20 people with great seats to watch the match! We all had a fabulous time and met some lovely people who own the suite. Some of them used to play for the Flyers back in the 70's!! Jamie got into the swing of it and cheered when the players were having punch ups!! He cheered for the Flyers and his first comment when he saw the suite, the rink and all the crowd in the arena?? "Wow, this is wicked!" I couldn't agree more. Thank you to Comcast who gave us the tickets and the people in the suit who were really friendly.
The weather has started to get warm again so on Thurs evening we went out for a pizza with another NB family. Normal things really do seem a treat at the moment! The Easter weekend was fabulous, Jamie took part in the Easter egg hunt at the RM House and then went to the Easter party in New Jersey in the afternoon. Our host family prepared a lovely Easter meal on Sunday and as it was so hot we went out to the park afterwards. They then took Jamie out for an ice cream in the evening so that John and I could get things packed ready to go back to the RM house for the next few sessions of Radiotherapy. We are moving around so much and living with each other in one room is hard work!
I ended up in the Emergency Room last night having swallowed a piece of hamburger the wrong way! It got stuck and I was in a lot of discomfort. They monitored my heart which was fine but my blood pressure seems to be high. I think we are going to have to slow down a bit now! I had to drink a wonderful cocktail to numb the oesophagus but today it is still quite sore. I feel so stupid and I only managed one bite of the burger!!! I am in no hurry to eat anything else at the moment!!
We also had news that our base quarter in Bucks County is available for us now. A charity have been working hard to help us furnish it so at least we will have our own space when needed. The house should be ready to move into by the end of the week. Jamie is at this moment, receiving his last session of radiotherapy!! The nurses have decorated his room and are preparing a little party for him!! They really are wonderful here. I have also just met another American family with Neuroblastoma and their son will start the antibody treatment at the same time as Jamie.
Oops have run out of time as packing the car to move to Bucks County. So much more has been happening but as soon as we can we will update again. One thing though...we really appreciate all the fundraising you are all still doing. The costs of this treatment are by no means fixed. For example - we have just found out that we will be coming back here for check ups every 3 months and God forbid, if Jamie were to relapse - we would have to come straight back to the USA then too!! We cannot express how grateful we are for your continued support. Thank you also to everyone who is helping us here especially to our host family, Henry and Barbara who are worth their weight in gold!
Love
The Inglis Family XXXX
Jamie has found it difficult coming round from the anaesthesia this week and has an intense period of screaming whilst cuddling me. He says he likes the dizzy medicine and wants it all the time!!!! Slightly worrying!! We have been given our treatment plan for the next few weeks and it's quite something. We questioned the start date for antibodies but things have got delayed a bit because of having radiotherapy and we now have to wait a week before the diagnostics can start. Dr. Maris has assured us that we are still within the time frame, they do in fact give 110 days but on day 100 all the paperwork has to be signed and completed. They also told us that it is giving Jamie the chance to be as strong and as fit as he can before antibodies start. True, he is in the best health since last year which brings me on to my next point.
On Thursday, it was a year ago that we heard the word Neuroblastoma and that our beautiful son had this ugly cancer. This is not the forum to talk about my personal feelings but this last year has been so very hard on Jamie and everyone involved but when I look at him now I am stunned by how he is getting through this. A poignant moment on Saturday when Jamie went to the 'Jesus is Alive' party at Henry and Barbara's Church was when Jamie was dancing in the aisle with his balloon to a song with the words 'He is Alive.' All I could think about was Jamie and that he is ALIVE and at the moment is having fun. We know that the next phase of treatment is going to be so tough but this is nearly the end. We are almost there!
The Ronald McDonald House were given free tickets for a family to enjoy the Ice Hockey game on Friday night. We expressed an interest [as Daddy's sport is Field Hockey!] and were given VIP passes to join a suite upstairs and watch the Flyers play Canada!! Jamie loved it! There were hot dogs, snacks, desert trolley, ice cream and a bar in each suite which hosts about 20 people with great seats to watch the match! We all had a fabulous time and met some lovely people who own the suite. Some of them used to play for the Flyers back in the 70's!! Jamie got into the swing of it and cheered when the players were having punch ups!! He cheered for the Flyers and his first comment when he saw the suite, the rink and all the crowd in the arena?? "Wow, this is wicked!" I couldn't agree more. Thank you to Comcast who gave us the tickets and the people in the suit who were really friendly.
The weather has started to get warm again so on Thurs evening we went out for a pizza with another NB family. Normal things really do seem a treat at the moment! The Easter weekend was fabulous, Jamie took part in the Easter egg hunt at the RM House and then went to the Easter party in New Jersey in the afternoon. Our host family prepared a lovely Easter meal on Sunday and as it was so hot we went out to the park afterwards. They then took Jamie out for an ice cream in the evening so that John and I could get things packed ready to go back to the RM house for the next few sessions of Radiotherapy. We are moving around so much and living with each other in one room is hard work!
I ended up in the Emergency Room last night having swallowed a piece of hamburger the wrong way! It got stuck and I was in a lot of discomfort. They monitored my heart which was fine but my blood pressure seems to be high. I think we are going to have to slow down a bit now! I had to drink a wonderful cocktail to numb the oesophagus but today it is still quite sore. I feel so stupid and I only managed one bite of the burger!!! I am in no hurry to eat anything else at the moment!!
We also had news that our base quarter in Bucks County is available for us now. A charity have been working hard to help us furnish it so at least we will have our own space when needed. The house should be ready to move into by the end of the week. Jamie is at this moment, receiving his last session of radiotherapy!! The nurses have decorated his room and are preparing a little party for him!! They really are wonderful here. I have also just met another American family with Neuroblastoma and their son will start the antibody treatment at the same time as Jamie.
Oops have run out of time as packing the car to move to Bucks County. So much more has been happening but as soon as we can we will update again. One thing though...we really appreciate all the fundraising you are all still doing. The costs of this treatment are by no means fixed. For example - we have just found out that we will be coming back here for check ups every 3 months and God forbid, if Jamie were to relapse - we would have to come straight back to the USA then too!! We cannot express how grateful we are for your continued support. Thank you also to everyone who is helping us here especially to our host family, Henry and Barbara who are worth their weight in gold!
Love
The Inglis Family XXXX
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