DAY PLUS 6: Our Seatbelts Are Fastened
by Jana
This week, Dr. Shyr (Oliver's awesome doctor who visited me in the ER in the middle of the night after Oliver's BMT and the whole cake o' doom incident) advised us to fasten our seat belts, because things were about to get a whole lot more difficult. And he was not joking. The things we know for sure that Oliver will go through these next several weeks are really scary and painful. When I think of those things combined with the long list of other things that are highly to somewhat likely to occur, I want to vomit and/or scream.
When we first started posting updates here, we were super cautious about Oliver's privacy and the downsides of sharing too many details about the horribleness of his treatment and particularly his challenging prognosis. Pretty quickly, though, it became clear that for Oliver to get through this, we needed the heavens to literally open up and that it would take an army of both people we knew and didn't know actively praying and petitioning on Oliver's behalf for that to happen. We knew people would be more likely to enlist if they knew why their efforts were so essential. Without that army, we do not believe that Oliver would be alive today, Day Plus 6 of his bone marrow transplant ("BMT") process.
Because we still need tons of support and a boatload of miracles to get us all through Oliver's BMT process and we know that there are people who care about and are rooting for him, we are going to continue to share details about Oliver's circumstances we would not otherwise be eager to share.
So here it goes . . .
Up until now, Oliver has been feeling relatively well, all things considered. He has been face timing his sisters, reading, passing out cheese puffs in barf bags, playing Life and Dragonvale, and watching Season 3 of the Great British Baking Show.
He actually did all of those things yesterday, in addition to starting on a pain pump because his mucositus had just begun to take hold. Soon his entire digestive tract, starting from his mouth, will be covered with mucositus, canker sore-like ulcerations. He has a suction system attached to his wall that he has started to use to suction out his mouth when it hurts too much to swallow. The severe mucositus is an expected effect of his pre-BMT radiation and chemo. It will clear up a few days after he starts growing neutrophils (those much loved disease-attacking white blood cells) with his brand new immune system that will be generated from his amazing donor's bone marrow. The neutrophils cannot start growing soon enough as far as we are concerned, but typically come two to four weeks post BMT. The second day in a row that Oliver has neutrophil counts of greater than 500 will be Oliver's Engraftment Day, the first major milestone of the BMT process. Being discharged from the hospital will be the next major milestone (one or two weeks after that if things go perfectly), followed by Day Plus 100.
In the meantime, our seat belts are fastened. We know who is at the controls of this roller coaster and that everything, regardless of how things turn out, will be okay. Still, though, this feels a little like the time I boarded LEGOLAND's roller coaster, the Dragon, with Oliver a few years back. Despite similar assurances, I had to fight the urge to jump off the moment we started moving and I screamed my guts out the entire time. Not something I really want to do again, but I will always welcome the opportunity to go on any ride with Oliver.
This week, Dr. Shyr (Oliver's awesome doctor who visited me in the ER in the middle of the night after Oliver's BMT and the whole cake o' doom incident) advised us to fasten our seat belts, because things were about to get a whole lot more difficult. And he was not joking. The things we know for sure that Oliver will go through these next several weeks are really scary and painful. When I think of those things combined with the long list of other things that are highly to somewhat likely to occur, I want to vomit and/or scream.
When we first started posting updates here, we were super cautious about Oliver's privacy and the downsides of sharing too many details about the horribleness of his treatment and particularly his challenging prognosis. Pretty quickly, though, it became clear that for Oliver to get through this, we needed the heavens to literally open up and that it would take an army of both people we knew and didn't know actively praying and petitioning on Oliver's behalf for that to happen. We knew people would be more likely to enlist if they knew why their efforts were so essential. Without that army, we do not believe that Oliver would be alive today, Day Plus 6 of his bone marrow transplant ("BMT") process.
Because we still need tons of support and a boatload of miracles to get us all through Oliver's BMT process and we know that there are people who care about and are rooting for him, we are going to continue to share details about Oliver's circumstances we would not otherwise be eager to share.
So here it goes . . .
Up until now, Oliver has been feeling relatively well, all things considered. He has been face timing his sisters, reading, passing out cheese puffs in barf bags, playing Life and Dragonvale, and watching Season 3 of the Great British Baking Show.
He actually did all of those things yesterday, in addition to starting on a pain pump because his mucositus had just begun to take hold. Soon his entire digestive tract, starting from his mouth, will be covered with mucositus, canker sore-like ulcerations. He has a suction system attached to his wall that he has started to use to suction out his mouth when it hurts too much to swallow. The severe mucositus is an expected effect of his pre-BMT radiation and chemo. It will clear up a few days after he starts growing neutrophils (those much loved disease-attacking white blood cells) with his brand new immune system that will be generated from his amazing donor's bone marrow. The neutrophils cannot start growing soon enough as far as we are concerned, but typically come two to four weeks post BMT. The second day in a row that Oliver has neutrophil counts of greater than 500 will be Oliver's Engraftment Day, the first major milestone of the BMT process. Being discharged from the hospital will be the next major milestone (one or two weeks after that if things go perfectly), followed by Day Plus 100.
In the meantime, our seat belts are fastened. We know who is at the controls of this roller coaster and that everything, regardless of how things turn out, will be okay. Still, though, this feels a little like the time I boarded LEGOLAND's roller coaster, the Dragon, with Oliver a few years back. Despite similar assurances, I had to fight the urge to jump off the moment we started moving and I screamed my guts out the entire time. Not something I really want to do again, but I will always welcome the opportunity to go on any ride with Oliver.
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| Oliver in bed with cheese puffs. Doesn't everyone store their snacks in a barf bag? |
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| Oliver thought the pain scale was too boring so he improved it. |
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| Oliver at Lego Land in 2014, shortly after riding the Dragon, his first roller coaster. |
