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
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