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