Wow! A lot has happened since my last post. For the first time ever, I now understand the difference between the marrow and the aspirate tests and how it relates to Jonathan's results. When Jonathan goes for a Bone Marrow Aspirate - they are actually taking a piece of the soft bone (not the core) and some of the liquid (marrow) as samples. The soft bone is the bone marrow test, while the liquid is the bone aspirate test. When the previous set of tests came back positive it was the bone marrow that was coming back positive - not the aspirate. So the way I picture it now is that there are NB (neuroblastoma) cells that have stuck on or clung to the inside of his bone and we're trying to clean (scrub) it away vs NB cells that are free flowing.
The interesting news was that the results from his last bone marrow aspirate test came back negative - even after the staining test. Again - similar to what happen in May - I am being cautiously optimistic. Our oncologist has already scheduled another bone marrow aspirate test in three weeks - which happens to be next week Wednesday (20th September) - so this will give us more definite news on whether this is a false negative or whether it looks like it might finally be clearing. What's going to be interesting is that we may have the bone marrow and aspirate taken from a different spot. My concern is that the same area is being sampled all the time, so that area must be getting soft. With the requirement of six months for the sample area to heal, then it means the areas on his back is not getting healed. So this time the samples will be taken from the front of his hips.
Other than - we went to camp Okizu over the labor day weekend - 1st to 3rd of September. All I can say is that I'm glad we went. It complete blew my mind. Arielle loved it so much she was crying when we had to pack up and leave. She was a little upset the next day (for a little bit) that we had to leave. I'm glad the kids had so much fun.
So Camp Okizu had a family camp for families where someone is either undergoing active treatment or has had cancer in the past. The facilities have lodges but we didn't sleep inside but on the porch. So the kids got to sleep in sleeping bags with the sky as our ceiling. I think that was the most awesome part because with the hustle and bustle of life it's very easy to forget what nature is like and just being able to slow down a bit. Our meals were taken care of as well - so yes - it wasn't a real camp but it did serve as a good introduction to what camping might be like. We also learnt that they run an Oncology camp - just for the patients - and a SIBS (Special and Important Brothers and Sisters) camp - just for the siblings of patients. We're hoping that Jonathan will go to the Oncology camp - the major challenge being able to convince him to leave mommy and daddy behind and spent a week in a strange place. Arielle is too young though - the minimum age is six so she'll have another year or two to go.
We also had support sessions on both days (Sat and Sun) for the parents. It was interesting hearing everyone's story and the challenges they had to go through but the eye opening was learning about the problems that siblings experience. Either feeling like the second wheel, or that their parents don't love them, or that they are not important and that the cancer patient gets all the gifts. We suspect that Arielle has some of those issues so it makes us realize that this is something we have to mindful of and try to treat them the same. The classic example given was the example of when you hear your kids cough. It's almost second nature that if the non-cancer patient was coughing then there wouldn't be much concern - sort of like "oh, it's only you that's coughing". If it was the cancer patient that was coughing then a totally different story.
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