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Acute Myeloid Leukemia - https://www.lls.org/content/what-is-aml
Our Story-Cindy's version:
Well who would have guessed we would be starting our own CaringBridge website. Just 1 week ago today we were doing an egg hunt and enjoying Easter together as a family, blissfully unaware of the journey we were about to begin...
Ok, were to begin? How about the middle? We are here at Aurora BayCare Hospital in Green Bay. The kids and I, with my sister Lorrie are watching Dave get yet another unit of blood and the continual infusion of a powerful chemotherapy drug called Cytarabine. He choose to get ahead of the hair loss today and trimmed his bushy beard down to stubble. A Hickman catheter is serving as his lifeline to deliver critical fluids his body is no longer producing enough of on his own.
Why? Well lets go back to the beginning. Dave has been feeling more fatigued and has had less stamina for the last month (maybe more). He tried to run the Seroogy's 5K this last Valentines Day and remembers having a hard time maintaining a run. As a good wife I chalked it up to him just not keeping up with his running. This lack of stamina just progressed to the point last week that he began to feel short of breath just walking in the yard. He also began to look more and more pale. Again, being the spouse of a nurse is not always to your advantage. We are the last to take our family into the doctor! Well after Dave took me by the shoulders and said "something is wrong with me." I finally, got it. After getting Emily safely on the bus for her band trip to New York City, Dave headed to the doctor. Even though by this time we both knew in our gut that something may be seriously wrong, my thought was its maybe some tick-borne disease or an issue with his hypothyroidism. Never in my wildest dreams could I have imagined the diagnosis we were about to be given.
More back story by Dave: First of all this is cool. This is a great device to keep in touch and help and old school dude enter the modern times. Now if only I could actually type. All you kiddos out there, learn to type with all your fingers and only use thumbs where it is supposed to be done. Ok, many are thinking holy crap, Dave was seemingly healthy, how can this happen. (I share that thought by the by) Well turns out, and many of you know that there aren't genetic links only theories about environmental causes. Perhaps a subject for a later post. Back in November and December there were times while deer hunting that I thought that I just didn't have the same energy but it was dismissed. Fast forward to the Seroogy's run mentioned ...ya that was a second indicator of low energy. After that in hind sight there were various cuts and abrasions from normal activities that just seemed to take a long time to heal. There were a few small sores on my arms and legs also that wouldn't go away and that were unusual. A few more running attempts in March (remember that when the weather was warm) and field work activities at work just plain wore me out. In recent weeks I think that there were digestive signals as well that I thought were tied to the Cleanse diet that Cindy, Emily and I were trying. Odd feelings of extreme hunger followed by extreme fullness made no sense at all. Long and short of it, is that there was only a month or two of any subtle indicators and a growing tolerance of the affects, so no one knows how long that this has been developing. Medical staff were quite shocked when they learned that I was functioning with a hemoglobin level of 5.
Close calls that I am thankful didn't amount to a different end that make me feel fortunate. I cut my fingers pretty badly opening a bottle of olive oil on Sunday, they day before being admitted. No clotting ability....yikes. Also after dropping Emily off at school for the NYC trip me, Lauren and Andrew (both in the back seat) came about as close as you can to being T-boned by a truck running a red light at the lights in Peshtigo. Had I gone with conviction when the light turned green for me....well lets just say I was fortunate again.
Acute Myeloid Leukemia. The doctors suspected Leukemia from the beginning. The confirmation came on Wednesday (April 4th). Too say we were in shock is an understatement. The absolute fear was too much at times. Still is too much at times. We are blessed with friends and family that immediately came to our rescue. We say thank you for giving Lauren and Andrew food and a place to sleep that first night, helping with the foot of snow that would block our driveway the next night, to taking over parenting our kids while Dave and I focused on just breathing. All the calls/texts really helped keep us moving from one moment to the next this first week. The outpouring of support truly does make a difference.
Dave and I have talked at length about how this just does not seem real. It is like we are actors in a movie. Each of us playing a part in this film that will not stop. We hope to wake up each day and have it finally be over. No such luck.
The kids (Emily 15, Lauren 12 and Andrew 9) are each processing this in their own ways. Lots of insecurity and tears. Fear that they themselves might "get sick." They, as myself, worry about the uncontrollable "what ifs." This is forcing us to truly live in the moment. We are all honestly a little afraid of looking ahead to the future. It is too unknown, too uncertain.
Plan...we finish a 7 continuous infusion of the chemo on Wednesday (April 11th). We then have 2 weeks of transfusions of blood products off/on as needed and waiting. A second bone marrow biopsy will be done around April 25th. Given those results we will plan for the next phase of treatment. That treatment may include more inpatient chemo, more outpatient chemo and/or a bone marrow transplant in Milwaukee. Like I said lots of unknowns.
Dave adds- despite the unknowns I can't even begin to imagine a better family, extended family, and friends network to have cancer within. We have more people with personal experience with disease both personally and very close. We have multi-faceted medical experienced people; HR, hospital v.p., nurses, social worker, terminally ill program directors and staff, as well as the best music therapist in the world! Further more family and friends are coming out of the wood work with per found support. Thank you doesn't cover it adequately.
Lastly, I am going to beat this because I need more time with Cindy, Emily, Lauren, and Andrew my loving powerful family.