Some of you may not have heard the news about Shelby. Jen, Shelby, Sam and I are going to be having our Thanksgiving dinner here at Sanford Children's Hospital in Sioux Falls, South Dakota. Several symptoms showed up and rather abruptly waved the flag that Shelby's bone marrow is on strike. The day before being flown to Sanford, blood tests revealed that her platelets were around 5,000 in number, but should be around 140,000. We have at least some very good news. The liquid part of the marrow sample taken today revealed that Shelby does NOT have leukemia! The biopsy from the core part of the marrow will provide an accurate diagnosis, but won't be available until Friday. At this point the doctor is leaning toward aplastic anemia, which is not the best news, but is very probably curable, which is good news. However, Shelby's lifestyle would require adjustments due to the treatment: suppressing her immune system for 6 months, and then tapering off of the meds for another period of time. We are expecting to go home on Saturday. Please pray for Shelby, and her doctor's wisdom in diagnosing and treatment. We are all pretty tired right now, but looking forward to a relaxing day tomorrow at this exceptional hospital...very cheerful, pleasant surroundings!
Much has occurred since the above email written at the very beginning of Shelby's Journey With Very Severe Aplastic Anemia.
The treatment mentioned ultimately failed, and Shelby found herself on a waiting list for the life-giving marrow of a bone marrow donor. Such a person was found somewhere in Europe, a perfect match!...a wonderful woman of approximately 52 years of age...for whom we prayed, and continue to pray after the giving of her gift. (Continued after photos)
October 31, 2013 - Day of new birth
Dr. Tolar personally delivered the precious marrow
Connecting the marrow to Shelby's central line
A 'quick' synopsis: The bone marrow transplant of October 31, 2013 and subsequent treatments successfully cured Shelby of VSAA. However, the immunosuppressants needed at the time to create the right environment for her new marrow to mature, also created the undesirable environment for PTLD (post-transplant lymphoproliferative disorder) to take hold...which we didn't realize at the time was actually a cancer. One complication after another last winter (2014) took us through the "valley of the shadow of death" many times. With the development of von Willebrand's disorder (bleeding disorder), Shelby's survival became less and less likely...although we weren't fully aware of it at the time. When the cancer word finally surfaced, we realized how little hope there was with traditional medicine, mainly because of the bleeding disorder—The staff in Minneapolis only had more chemo and steroid treatment to offer, which would have been almost certainly fatal.
But, hope flew back into the conference room (where Jen and we were gathered with a team of doctors) when a doctor suggested a possible alternative, a trial T-Cell treatment at Sloan Kettering Memorial Hospital in NYC. The doors swung open in rapid succession, and soon Jen and Shelby were transported via Sanford Children's Hospital's emergency jet. Sam and I headed home. Long long story short, three T-Cell treatment rounds in NYC (with us there for three weeks of the process) returned Shelby to a cancer-free state. We are now waiting for her own T-cells (set back because of earlier treatments) to move from the 40's range to 200 or more, at which point she may be able to return to SD and a progressively normal life. A couple of days ago she ecstatically jumped into Jen's pool in Florida, along with her younger sister, for her first swim in two years. Can you imagine!
To punctuate this story, it must be shared that at the point of the most painfully hopeless period of time, while three or four children died miserably there in the same hospital in Minneapolis where Shelby had received her transplant, I came to a place of relinquishing her to God, asking for His mercy, that she would not have to suffer one downward-spiralling harsh treatment after another until she dies the inexpressible way the others did. I told her to "feel free to go if Jesus comes knocking at your door...don't stick around for me if you are tired of this and He gives you the chance to leave." Shelby was so weary at that time that she wasn't even interested in looking at her facebook, which she thrived on earlier.
When Jen and we heard the good news about the possible transfer to NYC and a non-invasive form of treatment, we didn't convey the news to Shelby right away...not wanting to get her hopes up if it didn't work out. But we did post on the Journey page for prayers, and the response was phenomenal. I wanted to encourage Shelby without building up false hope, so one afternoon I just began reading to her the many heartening and loving comments that poured out on her behalf, along with the expressions of people praying for her, our church family, and people all over the world. While I was careful not to mention the reason for the wonderful comments and had read about half of them, suddenly Shelby sat up. She asked for help to get up out of bed. Thinking she needed to use the restroom, we inquired. But, no, "I want to sit in the chair," she croaked. (Her voice was extremely hoarse from the rawness created by a surgical procedure on her adenoids, which produced prolific bleeding, which eventually guided the doctors to the diagnosis of von Willebrand's disorder.) Next, she wanted to walk down the hallway to a room where there were a couple of bean bags, and she wanted to sit in one. It turned out the room was locked, it was the weekend, and no-one could open the door. So, we found a conference room with a couch in it. As she made herself comfortable, she noticed there was a board on the wall with erasable pens. She asked if we could play Hangman. So we did, several simple words (like God), then it was Grandpa's turn. I was writing and erasing, so I asked him how many letters. He threw his shoulders back, said, "18", and Shelby cracked up!! We hadn't even seen her smile in a long while, much less laugh. She knew Grandpa didn't know how to spell any 18 letter words, both of them being dyslexic. Well, I don't know any either. And from then on, mercy has been flowing in the way of life here on earth. Note: Since this was first written, Shelby's last report on her T-Cell count came in at 76!
Note: To support Shelby's journey to restored health, we are committed to providing her with a nutritious diet of wholesome organic foods, and are very eager for Shelby to return home so we can proceed...based on the good results my husband and I have had in building health through prayer and nutrition. Detoxing, I feel, is a very important part of the plan to implement. Pasteurised green drinks, such as Green Machine, are available in the mainstream marketplace. When the counts are up to normal enough and the immune system is strong enough where protection from potential pathogens is not such an extensive issue, then the raw green drinks can be given, such as organic Wheat Grass and Spirulina and Garden of Life's Organic Perfect Food RAW (superior!) These types of products can be purchased at near wholesale prices through websites such as Swanson Vitamins and Vitacost ... and prices can be compared as well as the sites' specials, which bring the costs even lower, along with usually free shipping.
Note: To support Shelby's journey to restored health, we are committed to providing her with a nutritious diet of wholesome organic foods, and are very eager for Shelby to return home so we can proceed...based on the good results my husband and I have had in building health through prayer and nutrition. Detoxing, I feel, is a very important part of the plan to implement. Pasteurised green drinks, such as Green Machine, are available in the mainstream marketplace. When the counts are up to normal enough and the immune system is strong enough where protection from potential pathogens is not such an extensive issue, then the raw green drinks can be given, such as organic Wheat Grass and Spirulina and Garden of Life's Organic Perfect Food RAW (superior!) These types of products can be purchased at near wholesale prices through websites such as Swanson Vitamins and Vitacost ... and prices can be compared as well as the sites' specials, which bring the costs even lower, along with usually free shipping.
After what we had been through, Sam and I were lacking energy and motivation to face our business in Hill City, and were more inclined to plan how we might find ourselves in rocking chairs on a porch in the Smoky Mountains where, to and from NYC, we had rendezvoused with friends. But gradually we came back to life and have enjoyed a bountiful and pleasant summer. (For the longer version, the roller coaster ride we experienced, scroll through the following five photos, which were taken September 7, 2014 at Horsethief Lake.)
Sam, posing with a golden aspen...
He must increase, but I must decrease.
[He must grow more prominent; I must grow less so.]
-John 3:30 AMP
September 9, 2014, initially shared with friends on Facebook...
"One of our guests who reserved at our Bed and Breakfast for the Rally of 2015 called this morning wondering if we would still be here. Just to set the record straight: We have no plans to sell our place...although when we returned from the grueling winter in Minneapolis staying with our granddaughter Shelby who was trying to survive a series of medical setbacks and complications after her bone marrow transplant...and also after three weeks in New York City during her T-Cell treatments this spring, we were in a state of shock/panic and truly felt like we couldn't face our business, and thought we would sell and maybe go sit on a porch in the Smoky Mountains...but did not make it official by putting a sign in the yard or anything that extreme. We did pray about it a lot, and a couple of realtor friends had been very helpful in setting possibilities before us. In our need for relief we spilled our dreamy beans a little too much, maybe. But then, the Good Lord began a campaign to revive us (and make our crooked paths straight)...and He succeeded, is succeeding. We did set out on a search for a retreat place (or possibly a place for retirement...had a lot of ideas really), but that did not come to pass, though it provided a lot of emotional relief, and who knows, maybe we'll be able yet to acquire (or rent!) that porch in the Smoky Mountains for our winter escapes. We are so grateful to our Tennessee friends who graciously accommodated us as we rendezvoused with them on their beautiful turf when flying to and from New York City. They extravagantly helped reawaken our love for the Smoky Mountains where we honeymooned back in 1993. Anyway, since then, we've been too busy with business and personal visits from friends from the south to actively pursue that particular sidetrack dream. Our future is in His hands...and at this time it appears we are still here. We have enjoyed a pleasant summer and are gearing up for next year. Of course, possibly if someone made an 'offer you can't refuse'...maybe we would and maybe we wouldn't. In our antique shop, people have been heard to argue, 'everything's for sale at some price', when they'd come across something without a tag and we'd tell them it was a display piece or whatever. To a degree, that possibility applies to our business as well. In that highly unlikely event, we would take care of any commitments we have regarding bookings, to not disappoint our guests. At any rate, the state of shock/panic has been transformed to something closer to our former normalcy. Did that sound like a roller coaster ride? It was."
September 11, 2014
"Thursday morning brought the earliest measurable snow on record (going as far back as 1888) to Rapid City, South Dakota where 1.6 inches was officially measured at the National Weather Service office."
Snow had been predicted, but perhaps the news had not been mentally recorded in many...though maybe laughed about! But then it came, like a surprise. Sometimes life gives us surprises like that; sometimes they are heartily embraced and sometimes not welcome.
For instance, the Winter Storm Atlas of October, 2013 brought extensive disaster to many ranchers and brought many households of activities to a standstill for varying lengths of time, even two weeks or more.
For us, the storm gave us the most extraordinary and amiably memorable experience with our Bed and Breakfast guests.
One couple was here for their honeymoon and of course they were snowed in, not a sad turn of events if you are on your honeymoon. The lights went out about 6:00 p.m. while the storm was still highly active. We provided the guests with battery lanterns. The honeymooners were in the only room that has hot water provided by a wall-mount instant water heater. Not minding taking a cold shower himself, the new husband was concerned for his bride though. The only vacant room had a 50 gallon tank full of hot water, so we equipped the bride with a flashlight and all she would need for a nice hot shower.
The other couple came for the Crazy Horse Marathon, which naturally was cancelled. But unfazed, the runner of the two requested a snow shovel and went to work on the snow piled up behind the vehicles. He and his wife also trudged through thigh deep snow to experience the Mickelson Trail as no one else would venture to do, maybe never again.
In the morning, the breakfast hour was nearing and the lights were still out, as well as the stove, microwave, espresso machine, freezer and refrigerator. Sam and I collaborated with the Lord on what would be for breakfast.
Sam the Cowboy Man pulled out his camp stove and set it up on the oblong dining table in the breakfast room. After setting the large oval table the usual way, I placed pretty depression green bowls filled with oranges and bananas. Sam retrieved my Mom's percolator coffee pot from a decorator shelf in the Prairie Homestead and heated water in it for our-style Cowboy Coffee. I quickly pulled some blueberry muffins out of the freezer and arranged them in a skillet lined with folded paper towels patted lightly with water, covered tightly with foil, and placed the skillet over a low flame on one of the camp stove's burners. On the other burner was a square griddle, where Sam was busy turning sausage patties. Next he heated water in a saucepan for Midwest Yellow Corn Grits, then he fried eggs, and also fried toast! In the meantime, I poured hot water from the percolator for tea for our Chinese guest...and for the other three guests I poured 1/8 cup coffee grounds into individual filter bags, and poured hot water over those. For the coffees, milk and cream were served in two of my growing collection of antique stoneware creamers. All came out perfectly wonderful and couldn't have tasted better!
We are fortunate our location is in line with Hill City's grocery store, where electricity is restored as quickly as possible. When the lights flickered and electricity returned around 10:30 a.m. I pressed the espresso machine power button. By request, I rustled up a new coffee-tea latte in honor of our young bride, Chauntel, who is a barista. She told us how she had created a "Dirty Chai Latte"...and I improvised with our own special ingredients to closely resemble her recipe, much to her satisfaction. To celebrate the auspicious occasion of a camp breakfast which will probably not re-occur for another hundred years, I named our rendition of the beverage, "Cowboy Chai Chauntel". She was honored, and really loved my version of her idea!!
And now we return to the surprise snowfall of September 11, 2014. Around 4:50 a.m. I awakened and retrieved my cell phone (camera) and stepped softly to the breakfast room where a comfortable chair was waiting for me. The large bay windows brought in a spectacular view. I posted a photo to Facebook for friends to enjoy...
As I gazed at snowflakes gently finding their place in the needles and green leaves, my thoughts drifted to the dream that awakened me only minutes earlier...a dream of someone in a room pounding on an unrelenting door, the sense of hopelessness, despair, and more. I had thought of our journey with Shelby through the "valley of the shadow of death" where many times the feeling of helplessness overwhelmed me, but for the knowledge that our Father in Heaven loves Shelby even more than I do. (He sent His Son to die for her, after all...He loves her with an everlasting love, I would reason.) And so, I could turn to Him and ask...no, beg for mercy, and in my heart I could churn the immediate urgent circumstances until they separated into whey and butter. His still small voice would make that happen. He would counsel me. ... My thoughts, as I watched snow continue to fall, suddenly shifted to September 11, 2001, and the dream then was about them, the ones trapped in an avalanche of collapsing tower fragments, the pressure, and the unspeakable more. How I hope they found solace in their Father in Heaven—"For His mercy endures forever."-Psalm 136:1
Never forget...
to pray for mercy;
Suffering is yet
someone burdening.
Lovely, the snow
tall on branches...
Until shaken down
it avalanches.
5:00 a.m.
Sam quietly entered the room
and asked what I was doing.
I explained.
He closely hugged me,
then, asked me to come back to bed
because without me he couldn't sleep.
He held me, I assume
until morning came.
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