We live a short while on earth below

Reluctant to die for we do not know

Just what “dark death” is all about

And so we view it with fear and doubt.

Not certain of what is around the bend,

We look on death as the final end

To all that made us a mortal being –

And yet, there lies just beyond our seeing,

A beautiful life so full and complete

That we should leave with hurrying feet

To walk with God by sacred streams

Amid beauty and peace beyond our dreams.

For all who believe in the Risen Lord

Have been assured of this reward,

And death for them is just graduation

To a higher realm of wide elevation.

For life on earth is a transient affair,

Just a few brief years in which to prepare

For life that is free from pain and tears,

Where time is not counted by hours or years.

For death is only the method God chose

To colonize heaven with the souls of those

Who by their apprenticeship on earth

Proved worthy to dwell in the land of new birth.

So death is not sad – it’s a time for elation,

A joyous transition – the soul’s emigration

Into a place where the soul’s safe and free

To live with God through eternity.

Helen Steiner Rice

Kanasy wasn't able to graduate from high school, but she did graduate to glory, and for that we are thankful.

Kanasy's poem Quietly Blessed has been published! You can find a review here: https://lissiesramblings.wordpress.com/2024/10/10/between-the-lines/

and you can order a hardback copy here: https://www.lulu.com/shop/rachel-m-adams-and-erin-hylands/between-the-lines/hardcover/product-dyjm4kv.html?q=Between+the+lines&page=1&pageSize=4 

or a paperback copy here: https://www.amazon.com/gp/product/B0DJ6BTW5F/ref=x_gr_bb_amazon?ie=UTF8&tag=x_gr_bb_amazon-20&linkCode=as2&camp=1789&creative=9325&creativeASIN=B0DJ6BTW5F&SubscriptionId=1MGPYB6YW3HWK55XCGG2

Kanasy's poem is included in this poetry anthology which is also dedicated to her. Thank you to her Young Writer's Workshop friends for graciously reaching out to include Kanasy in this publication -- I know she would be thrilled!

Kanasy could not have been given a better name. In her baby book, I had written: Kanasy expresses a deep longing to view something (as in the daily cry: "I wanna see. Can I see?") and Colette means victorious. We pray that God gives you the compelling desire to view heaven and see Jesus -- and that you would be victorious in that desire.

I made name plaques for each of our children when they were younger with their names, meanings, and appropriate verses. For Kanasy, I wrote "an intense desire to view something" and used Psalm 17:15 "And I -- in righteousness I will see your face; when I awake, I will be satisfied with seeing your likeness." For Colette, I used Psalm 20:5 "We will shout for joy when you are victorious and will lift up our banners in the name of our God."

The picture is her name plaque

Here is the poem I read at the memorial that makes me think of Kanasy:

 This do I glory in beneath the sun

 That men have lived brave lives in evil times

 Have kept glad-hearted under stress of pain

 Have fought against all odds, and not despaired

 Have fallen and died exulting. So may I

 Keep an undaunted spirit all my days

 Lose not the larger view, hold fast the joy

 And with high courage come unto my grave.

                                                           ~Edith Banfield

These are notes about Kanasy written by two of the amazing staff at Nationwide Children's -- the Child Life Specialist and the Music Therapist. 

Stephanie,                                                                                                              Tuesday, June 18, 2024

I think about Kanasy often; she will forever hold a special place in my heart. It was an honor to be a part of her journey. She taught me so much in such a short time together! Her creative spirit, vast imagination, and gentle nature will never be forgotten. I am glad your family has her legacy hand projects to cherish.

Sending love, strength, and prayers your way.

Certified Child Life Specialist

Family and Volunteer Services

Nationwide Children’s Hospital

Hi Stephanie,                                                                                                    Wednesday, June 19, 2024

I learned yesterday from [the Child Life Specialist] of Kanasy’s recent passing. I know I am not telling you anything you don’t already know, but I wanted to share how special of a person Kanasy is and the impact she made in my life. Never have I met someone who was so brave in the midst of adversity. Her outlook on her life and demeanor was like sunshine on a gray day. I was completely blown away by her ability to create these characters and dream of a world that is so creative and be able to put it into beautiful words.

I am incredibly honored to have known her, as well as you and the rest of your family, even for the short time it was. Creating a song with Kanasy was a session like no other and one I will treasure forever. I still get told from nurses on 7A how amazing our song is. While it may have been my singing, it was Kanasy’s words, her creativity, and her spirit that made the song. While my heart grieves for her passing, I join in the comfort that she is no longer in pain and has two working arms to complete her story.

Thank you for allowing me to be a part of your daughter’s journey.

Music Therapist – Board Certified

Neurologic Music Therapist

NICU - Music Therapist

Family & Volunteer Services

Nationwide Children’s Hospital

The picture is of a session with Kanasy and the music therapist writing a song together 

Here is a copy of Kanasy's biography from her memorial pamphlet:

Born gray and unresponsive at 1:50 am on Monday, January 15th, 2007, Kanasy Colette Yeager was our miracle baby whose fraternal twin we never met. After she started breathing, Kanasy didn’t waste time crying but intently observed the world and people around her. She was never the strongest or the fastest or the loudest. She often took a long time to learn something, but she persevered without discouragement and with her typical positive attitude.

She enjoyed talking and sharing her thoughts, jokes, and ideas, though often she was hard to hear because she spoke so softly.

Growing up, she, her siblings, and their cousins would play imagination games, making up stories to act out.

Kanasy was a fan of tea parties and collected many tea cups, pots, and saucers.

Kanasy was our resident hair stylist who gloried in creating new ways of doing not only her own but others’ hair as well. She had begun learning to sew with her aunt, making clothes and bags and hooded towels. She could often be found doing a craft.

Kanasy loved being with her nieces and nephews. She also worked with two-year olds at MOPPETS and helped coach the Cubs (1st – 4th graders) with their jumping for our homeschool track team. Kanasy wrote with her young cousin Kate and enjoyed working with Kate so much that Kanasy planned to offer a writing class this fall for a few 4th and 5th graders.

Although she lived the first sixteen years of her life compliantly, quietly doing what she was told, she began developing firm ideas and becoming vocal about them. She became fiercely pro-life, defying others’ skepticism about her right to existence as someone with neurofibromatosis type 1 (NF1). She determined to approach her condition with nutrition – learning and practicing all she could for optimal health, not only for herself but for all her future children.

In February 2023, Kanasy became a dedicated writer, designing a whole world with its own history, religions, languages, and people groups. She joined an online writers’ group about two weeks before being diagnosed as terminal and learned more about creating and shaping her stories. Kanasy looked forward to one day walking into bookstores and seeing her books displayed for sale.

She especially longed to marry and raise babies.

We are grateful to have had over 17 years to know Kanasy and watch our miracle baby grow. Because of Christ’s great sacrifice, we look forward to spending eternity with her and her reunited twin.

Kanasy's insurance (Colorado State Medicaid/Rocky Mountain Health Plans) sent notice in early July of their denial of care for her tumor removal in November. The denial notice reads in part, "While Ms. Yeager's medical care appears to have been appropriate and necessary, no reason for it to have been completed Out of State has been provided. Despite many outreach attempts, no letter of medical necessity, or other similar documentation or explanation is available. Therefore, this recommendation is for denial of this request due to lack of documented reason for the care to have been delivered Out of State."

I don't know where their "many outreach attempts" were directed, but I was not contacted until the denial. I appealed immediately and have a virtual hearing scheduled for Tuesday morning, August 6th.  Please pray for me as I sit before an administrative law court judge next week.

Also, the State Department of Health Care Policy and Financing recommended the court dismiss my appeal on the basis that Kanasy received the out of state care and therefore was not denied it. Here is the wording: "Ms. Yeager's received a denial for an out of state inpatient stay. The Department has learned through the utilization management company Acentra that Ms. Yeager received the out of state inpatient stay. 

"The purpose of member appeals is to dispute an adverse action, in this case the denial of a benefit or service. The benefit or service was provided and thus there is no adverse action."

Yes, Kanasy did receive the surgery -- and a good thing, too. To my mind, the "adverse action" is their denial of payment to Nationwide Children's. If any of you understand this better, please let me know.

Thank you for continuing to pray for us as we mourn. I will keep you updated on the appeal outcome next week.

Update 8/9/24:

Judge Keith Kirchubel presided and said that because Kanasy did receive care he is legally required to dismiss my appeal. He said that Nationwide Children's must make a provider appeal for payment. He also said that it was inappropriate for Nationwide to require me to sign an agreement to pay what Medicaid did not. Thank you for continuing to pray.

The audio quality is poor, but here is a link to Kanasy's memorial for those who are interested. (We plan to include a transcript at some point.)

https://www.facebook.com/events/1078401993880235/

Kanasy Colette stepped into eternity Saturday evening, June 8th, 2024 at 7:35 pm Mountain Time. We are so thankful she is pain free now, has two good arms and an immense amount of health. We are so sad to be separated from her, that these things weren’t able to be true for her in her physical body on this earth.

Thank you, all of you, for your prayers for her and for us. Thank you for walking through this incredibly difficult time with us. We are grateful to God for the blessing of Kanasy’s life and her spirit.

“My soul weeps because of grief; Strengthen me according to Thy word.” Psalm 119:28

After two five-day courses of one antibiotic, with a concurrent seven-day course of another, Kanasy’s cough and fever didn’t respond to the treatment at all. She finished her final dose on May 11th and when her pneumonia showed no sign of clearing, we began to suspect it might be fungal. That seemed to make sense as the spores that cause Valley Fever can harbor in sand, which she was raking throughout March. Healthy people are typically unaffected by breathing them in; they don’t respond to antibiotics since they are not bacterial; fungal pneumonia is not contagious; it tends to show up 1-3 weeks after exposure; and we live in an area where it is common. Her situation checked all those boxes, so we sought to have her tested.

In the meantime, her doctor ordered a follow-up chest x-ray and Kanasy finally had enough energy to get out for that on May 21st. This scan showed a 6 cm growth in her left lung and what was interpreted as fluid on her right lung. Because of the metastasis, Dr. Evans referred her for hospice care and she was accepted on May 23rd.

The fluid on her lung seemed to increase, making it difficult for her to breathe. At one point, she said it felt like her right lung was going to explode. Dr. Evans arranged a thoracentesis to drain excess fluid and ease her breathing – and hopefully also the referred pain in her right shoulder. I advocated for the drained fluid to be tested for fungus. After we arrived for that procedure the morning of May 30th, the ultrasound showed that it was not, in fact, fluid build-up on her right lung. Instead it was a solid mass of tissue “occupying the entirety of the right lower lobe.” Poor girl, no wonder she struggles to breathe.

Her referred shoulder pain has cleared up, thankfully. Her abs hurt from coughing, of course, and her right rib still hurts, too. Mainly, though, she is exhausted from trying to breathe. Small, regular doses of liquid morphine under her tongue help with her breathing right now.

She spends most of her time sitting up in a large recliner in our living room as lying down feels suffocating. She eats very little, concentrating mostly on breathing. She sleeps a great deal between those small doses of morphine.

With her pain mostly managed, she continues a positive outlook, though she is sad not to finish her book or to be able to meet her online writer friends this summer. She says she will miss seeing her nieces and nephews grow up and of course she sorrows for the husband and family she might have had. We all do.

Thank you for continuing to pray for Kanasy as she walks this road into eternity. How grateful we are for the life she has lived here; how overwhelmingly thankful we are that Christ has ensured she will continue to live. May we all seek to join her in God’s eternal presence.

Kanasy had two pretty good weeks at the end of March/beginning of April. Her neck pain cleared up and she slept well most of that time; she had no pain and decent energy. She was able to help with track practice, attend her drama classes again, and participate in an online writing club and painting class. I remember feeling thankful that she could lie down at night and go to sleep – and how lovely it was for me to do the same, without worrying about her waking in pain, as happened much of last year. I remember thinking how wonderful it would be for Kanasy to continue having a pain-free, reasonably energetic life.

After helping with track on Friday, April 5th, she had a rib pop out of place (probably from raking the jump pit), which caused pain each time she took a breath. Two days later, on Sunday evening, she began a cough – and a fever. As the cough increased over the next few days, her rib finally repositioned itself and the coughing only hurt her abdominals and not her side, too.

Listening to her cough took me back to September 1st, the day Dr. Foreman diagnosed her as terminal and told us we would know the cancer had metastasized to her lungs when she started coughing. That first week, her fever stayed between 100 and 103 degrees and the coughing was intense. The next week her fever dropped to between 99.6 and 101 and her coughing decreased. Last week, her fever and cough were back to the first week’s levels.

During this time, we were trying to get her chest CT scheduled but were having difficulty with communication between the hospital, the PCP here, and the oncologist in Ohio and trying to figure out who needs to authorize what to satisfy insurance requirements. When I told the Ohio doc last week about Kanasy’s on-going symptoms, he said he would like to wait until those had been cleared up for two weeks before having the scan. That was the first time I thought, “Maybe this isn’t metastases.”

Kanasy’s sisters urged us to contact the PCP, who finally responded Thursday evening (April 26th) directing us to take her to urgent care and get a chest x-ray. Late Friday morning we got the results of that scan: bacterial pneumonia in her right lung. She’s now taking a five-day course of antibiotics and, God willing, should feel much better in about a week.

It seems odd to rejoice over a diagnosis of pneumonia yet that is what we are doing. Even when you don’t know how to pray specifically for Kanasy, God knows what she needs and we see the evidence of your faithful petitions on her behalf. Thank you!

Thank you also for your thoughtful cards and gifts, including Victoria’s creative picture with encouraging Scripture. We are overflowing with gratefulness for all of you!

Dr. Yeager, the oncologist from Nationwide Children's, spoke with me on the phone today, expressing some surprise at Kanasy's apparent good health. She *has* been experiencing a "crick in the neck" type of pain since Friday; we're not sure if it's from an awkward sleep position or something else, but Dr. Yeager agreed that she could benefit from physical therapy and massage. Hopefully this week we can get those scheduled. He reminded me that her diagnosis is metastatic disease (aka 4th stage cancer) and there is no cure and no effective treatment. He said the oncologist in him wants to urge a certain targeted inhibitor...but the honest part of him knows that taking it would negatively impact Kanasy's quality of life and that its effectiveness is "mixed" and wouldn't meaningfully extend her life. 

Truthfully, it is hard to accept this terminal diagnosis when Kanasy is feeling so well. We continue to be grateful for these good days -- and Kanasy continues confidently assuring me that God will extend her life for decades, that she will be the first NF-1 teen with a metastasized MPNST who survives event-free for over five years. Perhaps she will.

"Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours." Mark 11:24

Our family holds hands during prayers. Today I realized we are improving our three-hand hold, which we use when sitting beside Kanasy. 

"A cord of three strands is not quickly torn apart." Ecclesiastes 4:12b

It is good to have so many praying for Kanasy — thank you! She has been spending time practicing one-handed techniques for previously easy skills like hand sewing (including threading a needle) and unscrewing lids. She has also been sorting through her childhood accumulations and tossing, donating, or giving things away now that she’s 17. 😄

Kanasy has had pretty much zero pain since our return home and is sleeping well. Her phantom itching has decreased to almost nothing and her phantom limb sensations are stabilizing. She would probably benefit from a session of something called mirror therapy.

On Monday, we had a very positive video visit with Dr. Bjorklund, who is pleased with Kanasy’s healing and her lack of pain. The surgeon said Kanasy should be able to start considering prosthetic options and said she would try to connect us with providers nearby.

Thursday, Kanasy got a chest X-ray as a follow up after her lung procedure. It shows that all is well with her lungs and that there are no additional spots of concern. (What a relief!) Kanasy continues her confidence in God’s care and long-term plans for her life. Her faith continues to challenge my own.

Kanasy feels well enough to volunteer as a track coach for our homeschool team, something she’s done the last two years. She’ll be helping the 1st-4th graders with their jumping skills through March and April.

Your prayers, support, gifts, cards, and letters encourage and strengthen us — thank you. ❤️

(The picture is a unicorn that Kanasy hand sewed together all by herself.)

We did make it home on Monday night — thank you for praying! We spent most of Tuesday visiting with our family — the children at home, the two married children and their families who live in town, and a married daughter who lives out of state but is in town helping a friend this week. Kanasy continues pain free, optimistic, and determined to accomplish things independently without being afraid to ask for help when needed. Her faith challenges my own.

Thank you for the many notes of encouragement and goodwill; they mean a lot to all of us!

We had a lovely drive to eastern Nebraska on Thursday, February 1st! Yes, the stops made it take a bit longer but an older amputee spoke with Kanasy at one of them and shared some encouragement. 

On Friday Kanasy took advantage of not traveling by sleeping a great deal — her body needs a lot of that to heal! And today she and I are at the library so we can access the internet, which is not working at my mom’s house. Our plan continues to be worshipping here on Sunday and visiting with family, then driving back home on Monday. 

The only medication Kanasy is taking now is the gabapentin, and she continues to be pain free. Thank you for your earnest prayers for her painless healing! 💗

We are again grateful for your many prayers. Kanasy had a positive appointment with Dr. Aldrink, the lung surgeon, on Wednesday the 31st. Another scan showed her lungs are staying fluid free, and after getting her wound dressing changed, we were cleared for travel — with instructions to stop for a short walk every 1.5 - 2 hours on the drive. Kanasy continues to improve on the spirometer, even able to top it out at times. The weather was good and we made it to our night’s destination in five hours, including stops for walking. We are praising God for His mercy, His grace, and His family. How thankful we are to be part of it!

The nurses all praised Kanasy for her positive attitude and her spunkiness. They called her their star patient and said she wins an award for fastest discharge. She knew the fast track to leaving involved walking the hall and using the spirometer, so she did both without complaint and we walked out of the hospital about 5 pm, less than 29 hours after her surgery. This wouldn’t have been possible without God’s help — and your earnest prayers that inclined His ear to our need. Thank you.

Kanasy slept most of the day Monday, all night last night, and most of the morning today (Tuesday, January 30th). She ate her first solid food since Sunday night — not that she couldn’t have yesterday; she just preferred to sleep. Her chest X-ray early this morning shows clear lungs, so she should be getting her drain tube removed soon. 

As always, hospital staff have been very kind and accommodating. We are grateful not just for the exceptional medical care but for the compassion with which it is delivered.

God willing, she will be discharged this afternoon. We will stay another night at RMHC and she has a late morning appointment with Dr. Aldrink tomorrow, after which we hope to travel five hours to eastern Illinois for the night. Thank you for your many prayers for Kanasy and our whole family. 💗

Praise God with us for answered prayers! Kanasy’s lung procedure went extremely well this morning— very straightforward. She is in post op right now, waking up from the anesthesia, and will then be transferred to a room on the 5th floor for observation overnight. I will stay with her there.

We are incredibly grateful for your many unceasing prayers!

(The picture is of Kanasy opening cards from our loving family in Christ here in Ohio.)

We are so thankful for Ronald McDonald House Charities and all that is provided to us (and many other families) through their volunteers and donors. We are served from 1-3 meals every day; we have free access to washers and dryers, as well as detergent, etc.; shampoo, towels, Kleenex, toilet paper, etc. are all gratis. This House has two family kitchens, each with two of everything— stoves, sinks, microwaves, refrigerators— as well as four additional refrigerators for families to store their personal food, which is all so helpful for those with special diets or a need to eat at different times.

On Thursday, a hair stylist volunteered her time to give haircuts, so our girls each got a trim. Today (Saturday) the NACHO street band played a concert for us. Several times a week, we have activities in the dining room — games or crafts or bingo. Once a week, a local artist displays her pictures and we can each choose one if we’d like.

This House has a library, a Lego room, a Cinderella room, a theater room, a computer room, a music room, and several community rooms for private-ish space to hang out in that is not your bedroom. They also have an exercise room, though we have yet to access it.

What a blessing this place is to families like ours!

How good our God is and how grateful we are that He led us to Nationwide Children’s Hospital! Doctors, med students, nurses, and staff continue working on Kanasy’s behalf, extending kindness and doing their best to help us get home quickly while ensuring continuation of her care.

Our appointment this afternoon with Dr. Bjorklund went well, with Kanasy’s surgical drain being removed (hurray!) and finding out that her internal stitches are all self-dissolving. MacKenzie from child life met us there and delivered the 3-D print of Kanasy’s left hand.

Wednesday evening, phantom pain began in Kanasy’s “invisible arm” so she’s become more serious about taking gabapentin. We definitely want to stay ahead of the pain curve.

The pathology report for her left arm shows that there were three malignant tumors growing, not just the biggest one that she had named Karlson. She decided the smaller two were Karlsbad and Karl junior — and she’s glad her body is no longer hosting them.

As always, thank you for your ongoing prayers! 💗

We had a quiet weekend with two delicious suppers served up by RMHC. Sunday it was time to remove Kanasy’s neck catheter which meant she could shower, making her very happy. It also means she no longer has a pain block and is expected to start feeling phantom limb pain; she has begun a low dose of gabapentin. So far, she’s had no pain, though phantom limb sensations began last week within 24 hours of the surgery — especially itching. She’s found ways of dealing with the itching by putting her hand on her shoulder or sometimes scratching in just the right place on her left side. When Dr. Scharschmidt’s office called this morning, his nurse expressed surprise that Kanasy wasn’t taking Valium and wasn’t experiencing any pain. Thank you for continuing to pray about her pain management; we’re so grateful she’s still pain-free.

We also received a call from the lung surgeon’s office. Dr. Aldrink does surgery on Mondays, so next Monday would be the soonest Kanasy could undergo the procedure. She’s healing very well and should be able to have another surgery then. Dr. Aldrink will coordinate needed scans for Thursday or Friday. 

If the scans show that Spot is benign (best case but unlikely), we’ll be able to start driving homeward this Friday afternoon or Saturday. If the scans indicate multiple spots of malignancy (worst case), one small lung resection won’t make a difference, and we’ll start our trip home on Friday or Saturday. If the scans light up just Spot, then we’ll be here about another week for Kanasy to have it removed and recover a bit.

As always, we are grateful to you all for your prayers 🙏🏻

Kanasy wrote this today:

I sit quietly in my room,

Thinking of all I have lost:

Strength,

Time,

A limb.

I’m blessed,

For I have not lost

Love,

Family,

Friends,

Hope.

My faith is stronger than before,

For when all was dark, 

He held my hand.

I have no need to falter,

He pulled me close;

I learned to trust Him more,

For He has a plan,

Tho’ I know it not.

He knows my limits;

He loves me still.

For all these things,

I shall sing,

I will shout

From the hilltops:

I am so blessed!

❤️

Last night as Kanasy was sitting on the couch in her room, eating supper and appreciating the lovely flowers and an edible arrangement she had been sent, she said, “I am so blessed.” And she is — both blessed and a blessing.

Before Kanasy was discharged this afternoon, several nurses came past to say goodbye and wish her well. Mary, a recreational therapist from the oncology floor, came down and visited with her for an hour, assuring us that the onc floor (which is where she’ll be when/if she’s admitted for the lung procedure) is wonderful. 

We made it to RMHC by 4 and got all settled in our room by 5:30. We started some laundry and ate supper together. It was so nice to be with each other again and not be separated. 

We have an appointment next Wednesday with the lung surgeon, after which we will hopefully know more about next steps. Friday next week will be our in-person follow-ups with Dr. Bjorklund and Dr. Scharschmidt, so we will be here at least until then.

Thank you for continuing to hold us up to the Throne of Heaven and the Mighty One seated there.

Kanasy is still pain free, for which we are so grateful. Wednesday night she felt a little sad about not having two arms (“I wish I had both of my arms”) and she seemed subdued today (Thursday), though that may also have been tiredness combined with an inability to speak above much more than a whisper. (She’s always been soft-spoken, but surgical intubation made her throat raw and her voice raspy.) We had another full day with surgical teams, PT and OT, multiple visits from pain team members, music therapy and child life. Kanasy walked the stairs, strolled the hall, and got a little massage, mostly on her sore neck. She learned to put on her socks and shirt with one arm.

Our visit with the oncology team yielded a path forward. Though we don’t yet know for certain, the small spot on her lung is most likely a metastasis of Karl, which would indicate it will be very aggressive. She needs it removed as soon as possible — balanced against her need to recover a bit from the surgery on Tuesday. We should find out today how long that recovery time should be. (Two weeks? Three? A month?) 

In the meantime, we plan to stay in this area, accommodated by Ronald McDonald House Charities, for which we are so grateful.

Thank you for your continued prayers ❤️

On Monday, the child life specialist here worked with Kanasy to create a legacy project of her left hand. The middle picture depicts mountains and a silvery, crescent moon — which also looks like a strong arm to me.

May you know the strong arm of the Lord in your life — His power, protection, and peace — as we do.

”My soul clings to Thee; Thy right hand upholds me.”  Psalm 64:8

Our God is powerful and He is hearing your prayers ❤️

Kanasy spent six hours in surgery yesterday and nine hours away from her room. Dr. Bjorklund and her team created a beautiful shoulder scar. Besides helping to decrease (or eliminate) phantom pain, the TMR sets up Kanasy for the possibility of using an electrical prosthetic in the future, which she is excited about. So far, Kanasy’s surgical recovery has been pain free. She was, of course, exhausted last night and this morning, recovering from the effects of anesthesia. She has a pain pump connected to a catheter in her neck, delivering a nerve block that is numbing her shoulder.

Occupational therapy came by this afternoon with some helpful tools for daily living with one arm. We also had visits from the pain team, orthopedics, the plastic surgery team, child life, music therapy, and previous nurses who wanted to see Kanasy again. Our morning nurse, Lauren, was able to remove Kanasy’s hair from under the sticky bandages on her neck and braid it up out of her way. Tomorrow’s line up includes the oncology team and physical therapy, as well as a massage therapist for Kanasy’s sore neck.

Thank you for praying for us as we seek God’s guidance. 

Surgery was delayed a bit this morning which gave me time to sing to and pray over Kanasy and gave her time to develop one of her story characters. 

Dr. Scharschmidt visited with Gary and me at 11:30, after he had finished his part of the procedure. He said Kanasy is doing very well and that all the margins of the amputation are negative.

Now Dr. Kim Bjorklund (an excellent plastic surgeon and associate of Dr. Amy Moore) is making everything “tidy” as well as using a technique called targeted muscle reinnervation (TMR) that should reduce Kanasy’s experience with phantom limb pain and increase her quality of life. We are thankful God has led us to skilled surgeons using cutting edge techniques.

There is a small spot of concern on her right lung that showed up on her lung CT yesterday so we will be meeting with the oncologist Dr. Yeager today or tomorrow to discuss approaches in dealing with that. I cannot possibly express my deep gratefulness for all of your prayers on our behalf. No matter what happens, we know that we serve a good and loving God.

We checked Kanasy in before noon and she’s on the same floor as last time so we got to see our favorite nurse and had a happy reunion with the child life specialist MacKenzie and the music therapist Hannah. (Hannah sang a lovely rendition of happy birthday for her.) Kanasy has an IV port in her arm and a lung CT this evening. Her surgery is scheduled for tomorrow morning at 7:30. Thank you for your faithful prayers 💕

Kanasy radiates sunshine — light and warmth — even during these coldest of winter days. Her mindset is acceptance of this inevitable reality and she is already learning how to accomplish tasks one-handed. She’s even figured out a way to put up her hair in a French twist with one hand. It looks elegant!

We worshipped and fellowshipped with some of God’s people in eastern Illinois on Sunday and made it to the Ronald McDonald House about 8:30 in the evening. Although the weather was less welcoming than our November drive, your prayers brought God’s favor and He helped us through the rough parts and cleared away the clouds in other parts. May He do the same for you on your journey through life.

We are grateful for Thanksgiving at home, surrounded by our children and their families. We are grateful for a peaceful Christmas, full of pain-free healing for Kanasy. We are grateful for the connections her nerves have made, astounding her therapists with movement and strength that should not be possible without an ulnar nerve. We are grateful for the respite and reprieve that December brought. 

As bandages and mesh were gradually coming off, we noticed a small lump that reminded us concerningly of Karl’s early days, though painless and somewhat squishier. We began measuring her arm circumference; some days it was bigger, some days smaller. On January 2nd, Dr. Scharschmidt ordered an MRI and on the 10th, our local hospital got Kanasy in. During that time, we watched her new lump (“Karlson”) trend ominously larger. 

We are thankful that when the results were available the afternoon of the 10th, Dr. S began working on coordinating Kanasy’s surgery in Ohio. We spent Thursday the 11th packing and preparing for a longer time away from home. 

We are thankful to be able to again stay with my mom tonight and to stay with part of our church family Saturday night. It will be good to worship with brothers and sisters in Christ on Sunday before finishing our drive to Columbus and the Ronald McDonald House that night, God willing. 

As always, we are most especially thankful for you, our prayer warriors. Please pray that this amputation will achieve all negative margins and that Kanasy has no cancer elsewhere in her body. Pray for complete healing with no infections. Pray for peace and even joy in the midst of this sorrow. 

Kanasy's arm continues to heal and we are grateful that she has appointments this week to be evaluated for physical and occupational as well as hand therapy. It has been months since she has straightened her left arm and of course it and her hand/fingers are quite weak. 

The local primary care provider who saw her for the past ten years has moved to a different clinic, so Kanasy has an appointment with a new PCP on January 4th.

Nationwide Children's has billed our insurance and is waiting for their denial, acceptance, or partial payment. Once that response has been received, we will be billed and can then apply for financial assistance if necessary. The current total sits up near 100K; we are blessed by your abundant generosity!

Thank you for continuing to pray -- for healing, for strengthening, and for Kanasy's future. She is planning to attend a young writers' retreat this summer, to meet other writers and be instructed by published authors. Pray with her that God would grant her the health to go -- and pray peace for my anxious momma's heart.

As I listen to our children's voices talking and laughing, joy and love wash over me, overshadowing my fears for the future and rooting me in gratitude for this moment. May you also focus on God's blessings in your life and know that He is good -- always.

"When I called, you answered me; you made me bold and stouthearted....

Though I walk in the midst of trouble, you preserve my life....

The Lord will fulfill His purpose for me...."

Psalm 138:3,7a,8a

How deeply we feel your many fervent prayers on Kanasy's behalf -- thank you! She has had no pain since her surgery and appreciates being able to lay down and sleep; what a blessing! She continues to have good movement in the fingers on her left hand, though they are all very weak. We are grateful for this reprieve from her pain and from the monstrous tumor that was Karl. 

Pathology results show that Karl was a high grade malignant peripheral nerve sheath tumor (MPNST). This type of tumor is the leading cause of death in NF1 patients, typically within five years of diagnosis. Though the surgeon removed all that was possible, microscopic bits of Karl were left behind, which could potentially develop into the spawn of Karl looking for a grudge match. The surgeon thinks there's a 50% chance this could happen; the oncologist believes it's 80% within two years.

We know that our God is sovereign over statistics. More than that, we know that He is a loving God in every circumstance, a God of life and healing -- sometimes physically; always spiritually. Kanasy steadfastly believes that God's plan for her includes decades of life, "a nice rancher boy," lots of children, and a writing career. It may also include an amputation sometime in 2024.

Thank you again for lifting us up in prayer as we look to God for guidance. We are so grateful for the way He has led us so far.

“May those who fear you rejoice when they see me, for I have put my hope in your word.”

Your prayers and God’s hand sped us homeward yesterday! Kanasy had no pain and the weather on Wednesday could not have been any more glorious for traveling this time of year. We made it home where three daughters and their families from out of state awaited us, along with the two girls and son who live at HQ (our children’s name for our home).

We pray your Thanksgiving is as magnificent as ours — God has smiled on us through all of you!

Discharge went smoothly (on Monday Nov. 20th), during which we met additional team members, all of whom are amazing assets and enjoyable individuals. Apparently we didn’t want to leave the hospital because it took us until 5 pm to do so. Then we cleaned up Gary’s room at the Ronald McDonald House where he had stayed. (What a blessing that was, ensuring that our driver was well rested and fed during the week!) We got on the road about 7 pm. Thankfully, our hosts were more than understanding— they were warm and welcoming, even though we arrived well past their usual bedtime and they both had work early Tuesday morning. They fed us supper that night and breakfast the next morning. It is good to be in the body of Christ!

Kanasy was concerned about sleeping Monday night with the catheter in her neck, the need to elevate her arm, and no adjustable hospital bed to help with proper positioning. Eight pillows, two strategically placed stuffed animals, and one reading pillow later, optimal position and comfort were achieved and Kanasy slept for nine hours. Nine! 

Needless to say, we left later than was ideal (early afternoon) from our ever patient and gracious hosts. What a comforting, encouraging blessing they have been to us!

With five pillows and a stuffed crocodile to position her arm, Kanasy has been traveling comfortably. The pain team and the surgeon’s office both called to check up on her and answer any questions. We made it to my mom’s house late and while we had originally intended to stay here several days, Wednesday’s gorgeous traveling weather beckons us homeward.

We feel deeply God’s goodness and mercy toward us and are grateful for you, His people, wrapping us in prayer, encouragement, and support. 

Kanasy is being discharged this afternoon! The norm here has been unfailing kindness from everyone, even the cleaning staff, and we’ve experienced nothing less today. From Mackenzie in Child Life to Hannah in music therapy, every nurse and PCA, doctor and fellow is excited with us for the successful surgery and our discharge today. I am overwhelmed with gratitude to our God and each one here who has been His hands, feet, and voice during our stay.

Kanasy will continue with the pain pump until Wednesday evening, when the medication runs out. She has several pain prescriptions being filled in the hospital pharmacy, which she will take during our trip home. Someone from the pain management team will be calling us each day to check on Kanasy’s pain level (which here at the hospital has been zero, thanks to the nerve block). 

In ten days, we will have a follow up video call with Dr. Scharschmidt, who said he spoke with Dr. Amy Moore this morning about Kanasy’s case and she has several ideas about possible approaches to repair. 

The occupational therapy team will send a referral to Rocky Mountain Orthopedics for continued follow up with her splint in Grand Junction.

We plan to drive this evening to eastern Illinois and stay a night with fellow Christians who graciously hosted us on our way here last week. Tuesday we plan to drive to eastern Nebraska and stay several nights with my mom. God willing, we should be home by early next week.

It is not possible for me to fully express my joy and thankfulness to God through this journey — and to you, His people, for your support and encouragement and especially your prayers 💕

“You are my God, and I will give you thanks; you are my God, and I will exalt you.”

Today (Sunday Nov. 19th) has been another day to rest and recover. The IV port on the back of Kanasy’s hand was removed just after midnight; the one in the crook of her elbow got taken out this evening — such a relief! Now she can fully bend and use her right arm again, which means she can scratch her own itches, feed herself, rub her eyes, etc. 

Tomorrow the drain tube in her left arm should be removed, so then she’ll be down to just one long tube running from the pain pump into her neck, delivering the numbing which has so successfully kept her from feeling pain since the surgery.

There is talk of discharge tomorrow and perhaps we will hear the pathology results as well. We are full of gratefulness to God … and to you, our faithful prayer warriors and supporters. ❤️❤️❤️

Praise the Lord, all you nations; extol Him, all you peoples. 

For great is His love toward us, and the faithfulness of the Lord endures forever.

Praise the Lord.

Today (Saturday the 18th) is recovery day and Kanasy has gone from having an IV to having just two ports ready for fluid (one in the crook of her right arm; the other on the back of her right hand) and she was able to stop using the leg compression pumps, which made her happy. She has a tube in her left arm for draining fluid and a catheter in her neck for delivering a numbing block for nerve pain.

She was fitted this afternoon with a splint for the pinky and ring fingers of her left hand to keep them stretched so they don't curl up and stiffen into that position. 

Recovery is uncomfortable and slow, but it's a necessary part of healing and we're ever so thankful to be in recovery from surgery instead of still preparing for/anticipating surgery.

We have yet to hear the pathology results; we will let you know when we find out.

Thank you again, everyone, for your perseverance in prayer.

Kanasy is out of surgery and Karl has been evicted! Until the pathology report, we won't know how complete the eviction is. Karl had basically become the ulnar nerve, so four inches of that nerve had to be removed in order to excise Karl. We may be looking at some sort of nerve repair so that Kanasy does not end up with a claw hand. Dr. Scharschmidt will discuss that possibility with Dr. Amy Moore. She is an expert in peripheral nerve surgery and will know if (and how) a gap that lengthy can be successfully repaired.

Thank you for your continued prayers as Kanasy heals from this and as we consider next steps.

"I love the Lord, for He heard my voice; He heard my cry for mercy. Because He turned His ear to me, I will call on Him as long as I live." Psalm 116:1,2

Karl has continued to grow during the few days we've been here and her left hand, fingers, and arm have considerable swelling. We are so grateful to be here right now! Surgery is scheduled for Friday morning, November 17th at 10:40 am Eastern time. The surgical team will make a final determination about whether to remove Karl completely or only mostly depending on its cooperativeness during surgery. We trust God who guides their decisions and so are at peace. The lead surgeon is Dr. Thomas Scharschmidt. Please pray for him as he prepares and for the whole team as they discuss and decide during the surgery. Pray earnestly with us that Karl would leave completely without too much fuss. Thank God with us for the skill, dedication, experience, and compassion of this team, as well as her other care teams.

Thank you for walking through this with us.

Kanasy's scans show clear for metastases and Karl appears self-enclosed, not invading bone, muscle, or skin - but pressing against all of those plus nerves as it grows. She is set to have surgery Friday morning, God willing, and the surgical team will make their best determination during the surgery itself about how to proceed, depending on how cooperative Karl is about being removed. Thank you for your many petitions to the Father on our behalf - today's imaging results reveal the best possible scenario for Kanasy's circumstances.

Kanasy is having a phenomenal experience here (Nationwide Children's Hospital) in terms of coordination among multiple care teams. Within just over 24 hours of check-in, she will have had two MRIs, several blood draws, two heart tests, a chest scan, and two CT scans. 

Thank you for your continued prayers as the teams interpret test results and collaborate to determine the best possible course for Kanasy's care.