We're slowly coming to the end of Jonathan's ch14.18 protocol treatment and occasionally my mind drifts on wondering what is the next stage? Does he get declared NED - no evidence of disease - or do we have to go onto another protocol / another treatment plan? For some reason I'm not really phased by it and this may be due to the fact that even if his results come back negative and Jonathan is declared NED - we will never really know whether all the tumor cells have been eradicated. We wouldn't know whether Jonathan will have a relapse and we'll have to go through all this treatment again - in the years to come. So - instead of being ecstatic about any news - my mentality is to just move through life and take what comes - going with the flow.
Last week was the week for Jonathan's evaluation tests - to determine whether the remaining tumor cells in Jonathan's body has increased (not likely), stayed the same (more likely) or decreased (somewhat likely). The medical team conducted three tests on him - a CT scan, an MIBG scan and a bone marrow aspirate (or biopsy). The result that I'm really waiting on is the bone marrow aspirate. Hopefully, we'll get those results by the end of today or tomorrow and it will be another data point to determine Jonathan's care.
On the good news side - we've finally decided to go on Jonathan's Make a Wish trip. So - we'll be heading to Orlando, Floriday for two weeks in the beginning of May 2006. Originally we were going to leave closer to mid-May and stay about three weeks - that way we would have had time to visit relatives in Florida, but since Jonathan's sixth round finishes on the 14th May - we have to be back during that week so the end of protocol tests can be done. Also - we didn't want to travel in June because we wanted to avoid being at Disneyworld for the summer vacation - too much crowd.
So - our plan is to have two sweet and relaxing weeks in Orlando. Make a Wish is covering 1 week and we're covering another week - to extend our trip. We've been talking to the kids about the upcoming trip - but whereas Arielle is excited to go - Jonathan is a bit apprehensive primarily due to the fact that he has to get on a plane. For some reason he's afraid of his ears hurting and I think it has to do with a time when he traveled as a baby - to Trinidad. If it wasn't for the plane ride - Jonathan would be more gun-hoe. In any event - we try to talk to him about it regularly and show our enthusiasm and assure him that everything will be alright.
This weekend we are taking the kids to see a Monster Truck rally (or show) and then Jonathan starts round 5 of his immunotherapy treatment. On Friday he starts getting the GM-CSF - infused in his line for about two hours a day for 14 days. The first dose is done at the day hospital while the other two - on Saturday and Sunday - will be done at home. On Sunday night he gets admitted to start getting the ch14.18 over the next four days. If all goes well - which it usually does for this type of round - Jonathan should be out by Friday and hopefully over the weekend we'll be able to go to the opening of Bonfante Gardens.
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