Monday: Kadence had her surgery at about 8:00 am and was back in the room by 9 ish. She was pretty unhappy due to the pain and the codeine based pain meds. Once she threw up she announced that she was ready to get out of bed and was down to the cafeteria for lunch. According to hospital staff it is very unusual for patients to be out of bed the first day.

Tuesday: The big event was the walker. Once Kadence mastered the walker, she was not to be stopped. We spent a lot of time walking the hospital and the grounds. She also got to decorate her halo and that of her American doll – also with halo attached.

Wednesday: Was a big “information” day. Kadence continues to get more and more mobile. We spent a good part of the day putting together a work area for her by the window (great view of the city). We also had a meeting with her entire care team which includes nurses, therapists, social workers and numerous others who are here to contribute to her success. They are awesome!

We also learned on Wedesday from Walter and Dr. Heflin that her rod surgery will be postponed by two weeks. Dr. Heflin said that he wants her to be up to full weight for about 4 weeks before placing the rods and because they add 1-2 pounds per day, it takes up to two weeks to get the full load of 18-20 pounds. We also learned that when the insert the rods the make an incision at her pelvis area and at the top of her ribs. The rods are then “threaded” through the soft tissue – attached to the pelvic bone and hooked over the top ribs. This is why it is so important to get all the benefit of the halo – to straighten her spine as much as possible before placement of the magic rods. While we were a bit thrown by the change in schedule we are confident in the expertise of the staff here and, more importantly, in the hand of God working through all things. One final bit of information we received was that in addition to the bi-monthly trips to adjust the magic rods, we will be back here to replace rods to accommodate her growth…. like we said, lots of information to process.

Thursday: Big event was her first shower since Monday morning. Who doesn’t love that feeling! Learning to clean the posts on halo and putting together a daily schedule to help Mimi when Mom leaves for two weeks. We also rearranged travel and lodging to accommodate new surgery schedule… All is in order.

Friday: Friday was a sad day as Mom had to leave to go back to Mesa. We were all sad to see her go but she is happy to see Daddy and Jayden. Now Mimi will be the main source of entertainment. Thank goodness for the hospital staff who have provided Kadence with lots of activities. Weight is up to eight pounds… with goal of 18 -20. Dr. Heflin says that she is right on track.

With the help of the staff, Kadence has a countdown calendar allowing her to track the time of Mom visits and rod surgery. She also has a gallery of all her family and pets so everyone who enters gets an introduction to all

Saturday and Sunday: The weekends are very boring around here as Kadence is the only patient in the hospital with the exception of a couple of families in the international family section. The staff is so accommodating but we are really thankful for technology as Kadence spent the afternoons on FB Messenger with her cousin and family. Today the nurse played board games with Kadence while Mimi made a run to Target to get some shirts for Kadence. She is up to nine pounds on the weight – nearly half-way to goal.

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Finally the day we have been waiting for has arrived. Katelyn and Kadence arrived safely on Saturday and we checked into our little Airbnb which will serve as housing for Mimi while Katelyn spends the nights in the hospital with Kadence. We spent the day touring Big Cottonwood Canyon while listening to Mimi recount the glory days of skiing there many years ago. (Not so glorious for Papa as he was a bit of a hazard on the slopes). It was a beautiful day to spend outside especially considering that the next six weeks will be largely indoors at the hospital. Kadence got to FaceTime her brother and Daddy… a few tears but mostly lots of love.

We arrived at the hospital and Kadence, of course had the staff enthralled with her spirit and excitement about the procedure. The procedure, itself lasted just long enough for Mimi to get her coffee and Katelyn to unpack and set up her room. We were told that when she woke she was calm (drugs, no doubt) but, according to Dr. Heflin, she will take a couple of days to get used to her new rig.

As predicted, Kadence was not happy when they brought her back to the room – a little “weepy” but not complaining of much pain. She will spend most of today in bed although they may want to get her up and in the wheel chair with rig.

If you would like to send Kadence a card you can do so at the following address:

We will post an update later this evening but wanted to let all know what is happening so far. Love and thanks to all who have been praying for her today.

It is 4:00 p.m. and Kadence has been a rock star. She had a rough morning but was in the chair and downstairs for lunch outside (We’re not in AZ anymore.. ha). Resting for the afternoon with dinner in the cafeteria again. Movie night with Mommy tonight and try the walker tomorrow.

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We are making progress as Katelyn is turning out to be a great project manager. We have all the airline tickets and lodging for the duration. This has been a pretty big undertaking as we have to figure out who is going to be where for the duration. So here is how it stands:

• Mimi will be leaving on Friday, 6/19 to drive to SLC so we will have a car while we are up there. (Pray for safe trip)
• Katelyn and Kadence will fly up on Saturday (6/20) and prep for surgery on Monday (6/22). Katelyn will stay in the hospital with her until Friday (6/26) when she will come home for the work-week. Mimi will take over in the hospital.
• Katelyn will come up on most weekends to see Kadence and give Mimi a break.
• Lee, Katelyn (and we wish Jayden) will come up on 7/25 for rod surgery. Lee will come home on 7/29; Katelyn and Mimi will stay until Kadence is released from the hospital.
• School starts for Kadence on 8/4 so we will see how she is doing by that time.

Now we begin praying in earnest that the everything will go according to plan, that Kadence will do well with all the procedures and that she will readily adapt to the physical challenges that she is going to face for the next 4-5 years. (If you read the “other Kadence” story in the previous post and you have seen Kadence in action you will understand how dramatic it could be.)

Please also be praying for Jayden who is going to suffer greatly – not being able to be a part of the travel and for all the family as they are going to be separated for at least 6 weeks. And don’t forget Papa who will be holding down the fort in Mesa and graciously filling in gaps where needed.

We are beyond grateful for your prayers and kind words – and for the financial support that you have given the family through the GoFundMe. It is so comforting to know that we are in the hands of a loving God and are surrounded by amazing family and friends.

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After much angst we have dates! Kadence will be in Salt Lake City on June 22 for the Halo surgery and the rods on July 27. This means that she will in “in residence” in the hospital with the Halo for 5 weeks. The doctors require a parent to be there to help her with day-to-day activities. Because Katelyn and Lee need to work Mimi will be ”in loco parentis” with the family visiting on weekends. After the Halo is removed and the rods are installed (7/27) we expect to be in the hospital for 5-7 days for her recovery getting her home just in time for school in the fall. We have been waiting for years for this, and while we are understandably nervous we are excited to begin this journey.

Many of the details have yet to be determined but as of now it looks as if the only people who will be making the trip are Kadence, Katelyn, Lee and Mimi, Shriners has indicated that because of COVID only caretakers (Mimi) and parents are allowed. We are hoping that will change and that Jayden will be able to visit. Watch for further updates. And please continue with your prayers.

In the meantime, you may find the story of another Kadence helpful in understanding what lies ahead Another Kadence.

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Many have asked for a status update on Kadence. As with most the doctors at Shriner’s have been on hold due to the Corona virus shut-downs. In addition SLC experienced two earthquakes during the month of March. Although there was no structural damage to the hospital they did have to close while they were assessing the damage. Obviously that was an additional disruption to the surgery schedules.

Dr. Heflin’s assistant has been very good about keeping us updated on developments with Kadence’s surgery but, as we would expect much is still to be determined.

He did contact Katelyn today and indicated that Kadence is at the top of the list for summer surgeries. What that means is that, barring more interruptions, we are hoping for a June date for the halo and then early July for the rods. This would be perfect timing as it would allow ample recovery time before the beginning of fall semester.

Thank you for your concern and your prayers. We will keep you posted.

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Today, after a few false starts, Kadence had the final tests required to schedule her surgery. The anesthesiologist in SLC wanted to see an echocardiogram and a pulmonary function test to make sure that she will not encounter any issues while under anesthesia.

As always, she charmed the technicians and all went smoothly (see latest Photo Album for more pictures). The results will now go directly to Shriners and hopefully we will have surgery dates within a week or so. Then we can begin the process of planning our trips to Salt Lake City. The logistics of all of it are overwhelming at times but we cannot say enough in praise of the Shriner organization and the support they have offered.

We continue to be grateful for the kind words and prayers of our family and friends.

If you would like to help the Burners with upcoming expenses please visit Kadence’s GoFundMe

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We have been busy for the last few weeks trying to get everything in place for what will likely be a prolonged visit to Salt Lake City. Our first concern, is getting the surgery scheduled, hopefully for the end of May so that Kadence will not need to miss school. In a best case scenario, the surgeries will begin during the end of May. She will be in Salt Lake City until the end of June or middle of July. Then home again with a few weeks to recover before school starts again early in August

Before they can even schedule the surgeries, however, she needs to see a cardiologist/pulmonologist to make sure that there are no irregularities to her heart or lungs which would compromise her respiration while under anesthesia. Because she has seen both in recent years we do not expect any problems but the anesthesiologist in SLC wants more recent tests. At this point, it appears that we will be able to take care of this here in Phoenix. Hopefully this can be done soon and we will be able to begin our plans for travel to SLC for the surgeries.

On another, related note: Many have asked how they can help Katelyn and Lee as they face the upcoming challenges of scheduling, travel and overall stress of Kadence’s upcoming surgeries. We so appreciate your thoughts and prayers. While her medical expenses are covered by Shriner’s, other costs (travel, lodging, living expenses and loss of income while in SLC) are expected to be substantial. Thanks to Katelyn’s cousin, Ashley Holland, for thinking of and organizing a FoFundMe for them. If you would like to contribute please see the link below

NOTE: If you would like to receive updates by email as we post, please subscribe to our blog (link to the right of this page) and feel free to share with trustworthy friends.

After a 1 ½ years of “no significant changes”, Dr. Heflin told us today that it is time to start the process of stabilizing Kadence’s spine. The curve has grown by about 5 degrees and Kadence has grown enough that he is comfortable moving forward. Here is the plan as we have it:

• Early summer – back to Shriner’s Hospital in Salt Lake City for Halo Traction . The installation of the halo is a relatively minor surgery as is recovery. Weight will gradually be added to the traction device over the next 4-5 weeks with the hope of straightening the curve. During this time, she will be staying at the hospital with a family member present at all times. While the whole family will make the trip for the procedure, Mimi will be the “resident family member” during the week with Katelyn, Lee and Jayden coming up for weekends.
• After the halo, they will install one or two Magnetic Rods depending on her size. This is a much more involved procedure and will be done either at Shriner’s or Primary Children’s Hospital – also in Salt Lake City. She is expected to need less than a week to recover from this surgery… then back home.
• Every 8-10 weeks we will be back to Shriner’s for extension of the rods. This is a non-invasive procedure which involves the use of a magnetic device which is placed strategically on the rods.
• When she is around 11-12 years old she will have spinal fusion surgery which will further stabilize her spine.

While we have sort of gotten used to the “no change” report and were a bit surprised at the turn of events, our minds were put at ease by the kindness and professionalism of the staff at Shriner’s hospital. We, of course met with her surgeon, Dr. Heflin, the anesthesiologist and the support staff. Kadence met her personal nurse, Walter, who is also a magician. She was impressed with his expertise and is looking forward to learning a few magic tricks so she can impress her brother.

We expect to be busy over the next few months getting everything in place for the surgeries and our extended stay in Salt Lake City. We continue to be deeply grateful for the Shriner’s organization and to Ronald McDonald House for their commitment to the health of these children and their families.

We are also so grateful for the prayers and support of our family and friends. We will keep you posted.

After our last visit with the doctor at Shriner’s we fully expected to be planning for a long-term stay and surgery with Kadence. We were surprised and very happy with the news that we got.

Dr. Heflin, after looking at her scans and consulting with colleagues, determined that the risks that accompany the surgery outweigh any benefit that would be gained. To quote him “…even though the x-rays look ugly, I still want to be backed into a corner before we perform surgery.” He said that while she is growing slowly, she is developing as she should and that her body is compensating for the curvature. She is fully mobile and her lungs are developing normally – our two primary concerns.

So there we have it. She will still see the team at Shriner’s every six months for x-rays and reassessment. While her condition could get worse at any time, he is hopeful that we can wait for several years for surgery..

This is Kadence doing her happy dance for all of us. Well that and the promise from her parents that she can still get the post-operative cat. We are now “in the hunt” as her Papa would say.

We thank all of you for your prayers and thoughts and will continue to update as we get news.

We have received a call from Shriner’s and the next appointment is set.   Katelyn, Lee and Kadence will go to Salt Lake City on January 21 to meet with surgeon and staff and hopefully come home with a treatment plan.

As I was praying for all involved this morning I was struck by a few things: 

•  Kadence is charming, intelligent and extremely active – as any six year old child should be.  It is hard to imagine that she is in need of such dramatic treatment.  However, here is a picture of the reality taken from the CT scan last month.  

• We, as those who love her, cannot fix this.  We have to submit her to those who have knowledge, experience and skill far greater than ours.  

• What we can do is pray:
  • for those charged with her care – that they will be at their best in every decision and action
  • for her – that her resilience and spirit will carry her through to total recovery
  • for those who love her – that we will be faithful in all things

We are grateful for the support we have received from all our family and friends and continue to ask for your prayers.

SM