What do you do when the big, bad wolf comes to your door? I guess we need to back up and define "big, bad wolf." We're all familiar with the big, bad wolves from fairy tales and cartoons. Some of us are familiar with the big, bad wolves from a certain series of books that had readers choosing between Team Jacob and Team Edward. As scary as any of the fictitious big, bad wolves might be, let me apply this sage bit of wisdom: reality is far scarier than any work of fiction ever conceived by mortal man. With fiction, you can turn the page...put the book down...change the channel, stop the movie...not buy the book, not buy the ticket. Not so much with real life. Reality has a tendency to shape shift (like Wolfie Jacob and his ilk). Situations and circumstances can either diffuse or intensify the level of badness of whatever wolf might be at the door. And the level of badness dictates how you might answer the door. Forgive me for speaking so presumptuously. That should read "...dictates how I might answer the door." On April 11, 2018, a wolf named acute myeloid leukemia (AML) came framming at our family's collective door. Framming = South Georgia for "knocking or pounding with great intensity as if to remove an object from it's moorings. And the one who had to answer the door was my sweet MILove.
My response to this was as many of you might predict...I cried. Lots. Buckets, in fact. If crying could cure this; if tears could release her from AML's jaws, I am here to tell you that she would be HEALED! But, they can't and she's not. At your leisure, feel free to read up on AML. Keeping with YBC policy of being real, I freely admit that I haven't read a thing born of my own investigative efforts. The information I have learned has come directly from her doctors and nurses and sometimes filtered through Mr. Snark. Some might call that childish or chicken hearted. Maybe it is. Looking up medical information on The Webs is a dicey endeavor. There is too much. Sources are not always credible. There there is the horror story factor...the tales that are a combination of every worst case scenario possible. Thanks, but no.
What I do know is that this type of leukemia is the "big, bad wolf." It is rare. The cure rate in children and adolescents is much higher than in adults. The median age for diagnosis is 65. If diagnosed after the age of 70, stem cell transplant is not an option. As much as is known by those who have devoted their lives to studying AML, there is still so much that is unknown. Individual response to the disease and treatment, pre-existing health issues, secondary infections...all of these weigh in on the prognosis and it's nowhere near predictable. For MILove, treatment increases her chance of survival but there is no concrete guarantee on life expectancy. Her treatment team is hesitant to discuss percentages and such.
Let me just stop right here and tell you a little bit about her treatment team. It was from labs that she has drawn pretty regularly that made her endocrinologist sit up and take notice. Levels tracked and then she was referred to her GP, who drew more detailed labs, which then sent her to the local oncologist. Within less than 24 hours of having final diagnostic information, the specialists were involved and a treatment plan was made. No time for much thinking or processing...just doing. She has received amazing care. The drugs are newly FDA approved and were very successful during their trial stages. Her doctors are being aggressive. No stone has been left unturned. If a test can be run, she's probably had it...more than one time. We've bonded with some of the resident physicians and when they've had to rotate to a new area, it's been heart breaking. Her nurses and care partners (what they call the CNA's) have been precious. At one point, MILove got pretty sick...out of the blue and rather uncontrollable. Nurse Destiny (wearing her Sp*der Man scrub top in honor of the new Av*ngers movie that was being released that day) and Care Partner Jenny treated her with SUCH dignity. Every move they made, every action they took prefaced with an explanation of what was about to happen and why. They spoke to her in soft, soothing tones...very much as if she belonged to them. And I guess, in those very tense moments, she did. It's the nurses and care partners who saw us round the clock. They answered the questions and when the answers were outside of their purview, they found someone to provide the answers. They offered comfort and advice, they laughed with us, shared our concerns and cheered MILove on when she made milestone improvements.
I bet you might be wondering how she's doing. I am so thankful to report that she is doing very well, all things considered. She is "very rock star," according to one of the doctors. She has responded to the treatments. The last two bone marrow biopsies have been absent of any leukemia cells. She's managed two rounds of IV maintenance chemo that each included two rounds of oral chemo. She's had some rough moments but I know of folks who have had far worse. Her faith has NOT wavered. Tell her that she's done a good job and she'll be quick to correct you and remind you that it is God working in her and he deserves the glory. "God's got this." That's what she tells us. She's doing everything that she can and trusting that he will do more than we can think to ask him to do. And y'all, he's been SOOOO faithful. With all that goes on in this crazy thing called Life, the creator of the universe cares enough about my family...about my MILove...about me...to let us know that he's not left us and has no plans to ever leave us. We have seen his hand in the big things...test results, traveling mercies, insurance concerns, perfect stem cell donor match, replacing a lost debit card, treatment toleration. We have seen his hand in the little things...parking spots (it is a LOTTERY and every driver for herself), sweet friends and family members refusing to let us pay for our meals, thoughtful friends sending cards to cheer and encourage the patient and pancakes for breakfast. Yep, pancakes for breakfast on that particular morning were a blessing and a love note from my Jesus! When the going gets tough, the tough sometimes need carbs...especially when you've been up and down all night...every time the door opens...with every drug induced-out-of-context-talking-in-her-sleep conversation...every time the IV pump beeps or the heart telemetry monitor sounds. Those monitors! As Nurse Bridget says, "They like to sing the song of their people!" On that particular morning, I was wishing for pancakes to soothe my weary soul and that's what came on the guest breakfast tray. Yes, pancakes were the cafeteria's special that morning...but I didn't know that. When I shared that with a friend, she summed it up so sweetly. "The LORD said, 'My baby wants pancakes, pancakes are what she gets!'"
Back to the perfect stem cell donor match. She has one and we were all so AMAZED to know that she and her youngest brother were perfectly matched on all ten DNA markers. Of course, if you've ever seen her...her youngest brother...Mr. Snark...Y2...you would not be at all surprised. Some families are clannish...this family is clone-ish :)
Things are in motion for this stem cell procedure. It involves a lot; more than I ever imagined. It involves a lot of opportunities to trust God. Not just with my head or with my words, but with my heart. It has involved a lot of letting go and in that letting go, I have discovered that I am much more of a control freak than I realized! The stripping away of my illusion of control has been painful...not going to lie. Also not going to lie that there is the temptation to try and retrieve what's been turned loose. A sweet friend reminded me that the process of denying ourselves in pursuit of Christ is a continual thing...a daily thing...a moment to moment thing.
I wrote most of this back in April, at the beginning of this roller coaster ride. April 2008 found us dealing with FILove's cancer diagnosis and treatment plan. Cancer of a different variety but the same feelings were and have been tumbling around in my heart. Perhaps intensified because of all that feels familiar...because of what is unknown. Back in April, I couldn't imagine much past April. It's almost August. I'd like to put this book down...change the channel...get off this ride...resume what was normal. I miss what life was like before this wolf came a-prowling. But we don't get to choose, do we. All we can do is answer the knocking...or the framming at the door with a brave face...a bucket of tears...and the very simple truth that "God's got this."
Because, dear hearts, he most surely does.
My response to this was as many of you might predict...I cried. Lots. Buckets, in fact. If crying could cure this; if tears could release her from AML's jaws, I am here to tell you that she would be HEALED! But, they can't and she's not. At your leisure, feel free to read up on AML. Keeping with YBC policy of being real, I freely admit that I haven't read a thing born of my own investigative efforts. The information I have learned has come directly from her doctors and nurses and sometimes filtered through Mr. Snark. Some might call that childish or chicken hearted. Maybe it is. Looking up medical information on The Webs is a dicey endeavor. There is too much. Sources are not always credible. There there is the horror story factor...the tales that are a combination of every worst case scenario possible. Thanks, but no.
What I do know is that this type of leukemia is the "big, bad wolf." It is rare. The cure rate in children and adolescents is much higher than in adults. The median age for diagnosis is 65. If diagnosed after the age of 70, stem cell transplant is not an option. As much as is known by those who have devoted their lives to studying AML, there is still so much that is unknown. Individual response to the disease and treatment, pre-existing health issues, secondary infections...all of these weigh in on the prognosis and it's nowhere near predictable. For MILove, treatment increases her chance of survival but there is no concrete guarantee on life expectancy. Her treatment team is hesitant to discuss percentages and such.
Let me just stop right here and tell you a little bit about her treatment team. It was from labs that she has drawn pretty regularly that made her endocrinologist sit up and take notice. Levels tracked and then she was referred to her GP, who drew more detailed labs, which then sent her to the local oncologist. Within less than 24 hours of having final diagnostic information, the specialists were involved and a treatment plan was made. No time for much thinking or processing...just doing. She has received amazing care. The drugs are newly FDA approved and were very successful during their trial stages. Her doctors are being aggressive. No stone has been left unturned. If a test can be run, she's probably had it...more than one time. We've bonded with some of the resident physicians and when they've had to rotate to a new area, it's been heart breaking. Her nurses and care partners (what they call the CNA's) have been precious. At one point, MILove got pretty sick...out of the blue and rather uncontrollable. Nurse Destiny (wearing her Sp*der Man scrub top in honor of the new Av*ngers movie that was being released that day) and Care Partner Jenny treated her with SUCH dignity. Every move they made, every action they took prefaced with an explanation of what was about to happen and why. They spoke to her in soft, soothing tones...very much as if she belonged to them. And I guess, in those very tense moments, she did. It's the nurses and care partners who saw us round the clock. They answered the questions and when the answers were outside of their purview, they found someone to provide the answers. They offered comfort and advice, they laughed with us, shared our concerns and cheered MILove on when she made milestone improvements.
I bet you might be wondering how she's doing. I am so thankful to report that she is doing very well, all things considered. She is "very rock star," according to one of the doctors. She has responded to the treatments. The last two bone marrow biopsies have been absent of any leukemia cells. She's managed two rounds of IV maintenance chemo that each included two rounds of oral chemo. She's had some rough moments but I know of folks who have had far worse. Her faith has NOT wavered. Tell her that she's done a good job and she'll be quick to correct you and remind you that it is God working in her and he deserves the glory. "God's got this." That's what she tells us. She's doing everything that she can and trusting that he will do more than we can think to ask him to do. And y'all, he's been SOOOO faithful. With all that goes on in this crazy thing called Life, the creator of the universe cares enough about my family...about my MILove...about me...to let us know that he's not left us and has no plans to ever leave us. We have seen his hand in the big things...test results, traveling mercies, insurance concerns, perfect stem cell donor match, replacing a lost debit card, treatment toleration. We have seen his hand in the little things...parking spots (it is a LOTTERY and every driver for herself), sweet friends and family members refusing to let us pay for our meals, thoughtful friends sending cards to cheer and encourage the patient and pancakes for breakfast. Yep, pancakes for breakfast on that particular morning were a blessing and a love note from my Jesus! When the going gets tough, the tough sometimes need carbs...especially when you've been up and down all night...every time the door opens...with every drug induced-out-of-context-talking-in-her-sleep conversation...every time the IV pump beeps or the heart telemetry monitor sounds. Those monitors! As Nurse Bridget says, "They like to sing the song of their people!" On that particular morning, I was wishing for pancakes to soothe my weary soul and that's what came on the guest breakfast tray. Yes, pancakes were the cafeteria's special that morning...but I didn't know that. When I shared that with a friend, she summed it up so sweetly. "The LORD said, 'My baby wants pancakes, pancakes are what she gets!'"
Back to the perfect stem cell donor match. She has one and we were all so AMAZED to know that she and her youngest brother were perfectly matched on all ten DNA markers. Of course, if you've ever seen her...her youngest brother...Mr. Snark...Y2...you would not be at all surprised. Some families are clannish...this family is clone-ish :)
Things are in motion for this stem cell procedure. It involves a lot; more than I ever imagined. It involves a lot of opportunities to trust God. Not just with my head or with my words, but with my heart. It has involved a lot of letting go and in that letting go, I have discovered that I am much more of a control freak than I realized! The stripping away of my illusion of control has been painful...not going to lie. Also not going to lie that there is the temptation to try and retrieve what's been turned loose. A sweet friend reminded me that the process of denying ourselves in pursuit of Christ is a continual thing...a daily thing...a moment to moment thing.
I wrote most of this back in April, at the beginning of this roller coaster ride. April 2008 found us dealing with FILove's cancer diagnosis and treatment plan. Cancer of a different variety but the same feelings were and have been tumbling around in my heart. Perhaps intensified because of all that feels familiar...because of what is unknown. Back in April, I couldn't imagine much past April. It's almost August. I'd like to put this book down...change the channel...get off this ride...resume what was normal. I miss what life was like before this wolf came a-prowling. But we don't get to choose, do we. All we can do is answer the knocking...or the framming at the door with a brave face...a bucket of tears...and the very simple truth that "God's got this."
Because, dear hearts, he most surely does.
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