What We Know
by Jana (with Bill)
I will start out with this. Last Saturday, as I was walking Bill out of Primary Children's, we were having a heavy discussion about the grim implications of Oliver's suspected case of invasive fungal infection. All of a sudden, I felt an intense rush of warmth and lightness throughout my body, accompanied by a powerful, relieving sense that everything was somehow going to be okay. After I said goodbye to Bill, I rushed back upstairs to Oliver, jumped on his bed and happily announced that I knew everything was going to be okay. Rather than looking reassured and relieved, he just seemed amused and a bit confused. He said cheerfully, "I already knew that, Mom!" He proceeded to explain that ever since the day he was diagnosed with acute myeloid leukemia ("AML") last fall, he has known that everything was going to be okay. It is just something he knows.
I will start out with this. Last Saturday, as I was walking Bill out of Primary Children's, we were having a heavy discussion about the grim implications of Oliver's suspected case of invasive fungal infection. All of a sudden, I felt an intense rush of warmth and lightness throughout my body, accompanied by a powerful, relieving sense that everything was somehow going to be okay. After I said goodbye to Bill, I rushed back upstairs to Oliver, jumped on his bed and happily announced that I knew everything was going to be okay. Rather than looking reassured and relieved, he just seemed amused and a bit confused. He said cheerfully, "I already knew that, Mom!" He proceeded to explain that ever since the day he was diagnosed with acute myeloid leukemia ("AML") last fall, he has known that everything was going to be okay. It is just something he knows.
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| Oliver dancing on his way to radiology last week. |
With respect to Oliver's medical condition, here is what we know:
Only about 500 kids are diagnosed with AML each year, it is an aggressive leukemia overall, and Oliver's AML cells are extra chemo-resistant and aggressive. He has been living at Primary Children's with relapsed AML for two months with the goal of going into remission so he can start treatment for a life saving bone marrow transplant. The chemo protocol that generally works for putting relapsed AML kids back into remission did not work. Oliver is currently on the Mylotarg chemo clinical trial and when his white blood cells ("WBC") start growing in a few days, we will know if it worked. It is statistically very unlikely that it has. If it has, he will start growing a healthy type of WBC called neutrophils, which will help him to start fighting infections, instead of leukemic WBC.
The prognosis for someone who has an invasive fungal infection, while severely immunocompromised and awaiting a bone marrow transplant, is dismal, especially if that person is also actively fighting leukemia at the same time. Last week Oliver came up positive on a test that indicated, but did not positively confirm, that he has one of the more aggressive invasive fungal infections, Aspergillosis. There were no visible signs of infection on imaging. This week, after a sinus biopsy that turned into an impromptu major sinus surgery midstream, we learned that Oliver has an invasive fungal infection that has pervaded deep into the tissues in his sinuses and surrounding areas. The diagnosis of Aspergillosis has since been confirmed.
Oliver is being treated with serial sinus surgeries and max doses of Amphotericin and Voriconzole, which will wreak havoc on his kidneys and liver. He is getting shots to make his WBC start to grow sooner in the hope that they will include disease fighting neutrophils and not leukemia. We have been informed that if he does not start making neutrophils, he has only days to as much as a few weeks to live. Due to the pervasiveness of the infection and the toxicity of the meds, we have been informed that even if he is initially cancer-free and starts growing neutrophils, survival would be highly unlikely at this point.
Everyone, including the amazing staff at Primary Children's, is going above and beyond to ensure that Oliver's quality of life is as high as possible. We have absolutely no idea how he will feel on a day-to-day basis from this point forward. We were able to witness a few classic Oliver smiles yesterday, however, and are hopeful that there will be many, many more to come.
With respect to our God and our faith, here is what we know:
We have personal confirmation that He is real and that He loves Oliver and the rest of us to a degree we cannot even begin to imagine. He has plans for us that are a million times more amazing than the ones we have for ourselves. Even when Bill and I have consciously or unconsciously turned away from Him out of fear, distraction, self-doubt and a bunch of other sins, He has never abandoned us. He has been right here next to Oliver and the rest us throughout this entire struggle and every single moment of every single day of our lives.
He has also never let any of us down, not even once. We feel pretty confident that He is not about to start doing so now.
Our lives have been jam-packed with countless blessing and miracles. Some have been asked for and gratefully acknowledged, most have not. They still have come. We are praying our hearts and guts out and asking that Oliver's life be spared. We know that hundreds of others are doing the same. We don't know if that specific miracle will come. Our hearts are aching constantly and in a way that makes it hard for us to breath at times. But, because of what we do know about God and His plans for Oliver and the rest of us, we know that everything is going to be okay.
Oliver is being treated with serial sinus surgeries and max doses of Amphotericin and Voriconzole, which will wreak havoc on his kidneys and liver. He is getting shots to make his WBC start to grow sooner in the hope that they will include disease fighting neutrophils and not leukemia. We have been informed that if he does not start making neutrophils, he has only days to as much as a few weeks to live. Due to the pervasiveness of the infection and the toxicity of the meds, we have been informed that even if he is initially cancer-free and starts growing neutrophils, survival would be highly unlikely at this point.
Everyone, including the amazing staff at Primary Children's, is going above and beyond to ensure that Oliver's quality of life is as high as possible. We have absolutely no idea how he will feel on a day-to-day basis from this point forward. We were able to witness a few classic Oliver smiles yesterday, however, and are hopeful that there will be many, many more to come.
With respect to our God and our faith, here is what we know:
We have personal confirmation that He is real and that He loves Oliver and the rest of us to a degree we cannot even begin to imagine. He has plans for us that are a million times more amazing than the ones we have for ourselves. Even when Bill and I have consciously or unconsciously turned away from Him out of fear, distraction, self-doubt and a bunch of other sins, He has never abandoned us. He has been right here next to Oliver and the rest us throughout this entire struggle and every single moment of every single day of our lives.
He has also never let any of us down, not even once. We feel pretty confident that He is not about to start doing so now.
Our lives have been jam-packed with countless blessing and miracles. Some have been asked for and gratefully acknowledged, most have not. They still have come. We are praying our hearts and guts out and asking that Oliver's life be spared. We know that hundreds of others are doing the same. We don't know if that specific miracle will come. Our hearts are aching constantly and in a way that makes it hard for us to breath at times. But, because of what we do know about God and His plans for Oliver and the rest of us, we know that everything is going to be okay.
