2/26/2020 Last scan

 Day three of the Octreotide scan was completed today. And now we wait.............................................

Kaylee has continued to support her Monrovia Middle soccer team from the sidelines. Tuesday she helped celebrate a 9-0 win over Austin Middle School (Decatur). After school today she stayed for the MMS boys soccer game and was honored that a few of the boys used Zebra print duct tape on their cleats to show support for Kaylee. (Zebra print ribbon is used for Rare Carcinoid Cancer Awareness)

2/27/2020 St. Jude Visit 1

Scans and tests were clear from any other tumors! Two questionable cysts on ovaries, which they feel are benign. However, they do warrant a second opinion. Based on the findings her case will be presented to the St. Jude team of experts on solid tumors in Memphis next Wednesday. Surgery will be scheduled for next Thursday at HH Women's and Children's with Dr. Murrell.  There is a chance, based on the results of Wed findings, the surgery could be rescheduled.  This is yet another test of our patience, but for the good!  We feel we can make the best decision on a treatment plan after we have all the pieces to the puzzle!

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2/24/2020- Octreotide Scan

We started off the morning with breakfast at one of Kaylee's favorite places Chick-fil-a! We arrived at HH Imagining, signed in, and after a short wait, we were escorted to the scan room. Although Kaylee was prepared for another IV, she quickly learned they would only have to use a small blue butterfly to inject the medication.

After the medicine was injected, the wait began. During our 4 hour window, we made a stop at Cornerstone Pediatrics where this journey began. Kaylee wanted to thank Dr. Johnson for listening to her complaints of stomach pain and ordering the extra blood work.

Arriving back to HH Imaging, we were quickly sent back to the scan room. The photos below show Kaylee during her Octerotide scan. Tuesday and Wednesday scans are relatively fast and we have scheduled them early in the morning so she should not miss much school.

How does she spend her evening, you ask? After a long day of scans, Kaylee is spending her evening doing make up school work! What an amazing girl!

2/20/2020 -New Scan Schedule

The octreotide scan is now ordered for Monday Feb 24th at 930am and 130pm.  With the 4 hour window in between scans, we will be seeking out avenues to occupy our time. Returning for follow up scans Tuesday and Wednesday. Our new appointment with St. Jude's is Thursday at 10am. This is where we will review all the results of the scans and determine the best course of treatment. The tentative plan is to have the right hemicolectomy sometime in early March (week of 2-6). This will involve 5-7 days inpatient followed by a week of recovery at home.

2/19/2020 - FedEx Fail

As we are sitting here, waiting patiently for the completion of the MRI, we are notified FED EX FAILED! We were just notified the nuclear medicine Kaylee was to ingest for the Octerotide scan did not arrive to HH! This means we will be back next Monday-Wednesday for the Octerotide scan and Kaylee will have to have another IV! Anger has taken over me right now!

2/18/2020-Scan Schedule

Wednesday 2/19/2020 Kaylee will go to Huntsville Hospital Women's and Children's to get an MRI. Then she will be transferred to HH Main via tram to have her Octreotide Scan. The Octreotide scan will be administered over a 3 day period. She will begin the test Wednesday at approx. 1130am and will have to wait 4 hours for the next phase. We will go back Thursday morning and then again Friday morning. This will complete her testing and results will be shared with a team of doctors at the Memphis Campus of St. Jude to collaborate the best course of treatment for Kaylee. We will then meet with Dr. Cox at the St. Jude Clinic in Huntsville for the results. That same afternoon we will meet with her surgeon, Dr. Gilbert to schedule her right hemicolectomy. She is planning to have lots of friends time between the tests and Monday Feb 24th. Mom and Dad are planning to relax this weekend too, and prepare for this next phase of treatments! She's got this! #southernstrong

2/3/2020 -Journey Begins

This is difficult for us to share. But we think it is very important to let our friends and family know what is going on. Last week our daughter Kaylee was diagnosed with cancer. She is going to be ok. Kaylee is a tough young lady with an amazing way of handling adversity. She has an awesome team behind her. The best doctors with St. Jude's Children's Hospital, the best family and friends, and the best teachers and coaches are all on board. Everyone on her team is ready to help and she is doing great! For those who would like to know what the Southern family has been up to, the whole story is below. Thanks so much for your prayers and kind thoughts! We really appreciate them!

Kaylee was complaining of mild intermittent stomach pain for a little over a week starting around January 25th, 2020. We first thought this was anxiety, due to playing soccer in the Regional ODP Championships. During our ride home from the tournament, she continued to voice pain in her abdomen area. We then started to question her dietary habits. Thinking this could be trapped gas, acid reflux, lactose intolerance, we gave her numerous OTC stomach related medications like Pepcid, Tums, GasX, and Mylanta.  With no relief, on day 7 during the SuperBowl, we had her assessed by a family friend who is an RN. She indicated some rebound pain and thought it would be best for her pediatrician to assess. 

I called Cornerstone Pediatrics first thing Monday February 3rd, 2020. I made an appointment at 1040am with Dr. Steven Johnson. During the evaluation, he completed an overall routine exam. He then ordered an UA (Kaylee thought this was funny that she had to pee in a cup!), blood work, and an ultrasound of her abdomen. The UA was completed in the office and was noted to be WNL.  We departed and headed to Madison Hospital Lab, where Kaylee would get her 1st labs drawn! What a champ! I received a phone call from Dr. Johnson about 3:30pm that afternoon, asking us to take Kaylee to the HH Ped ER. Keith came home and we headed that way.

Arrival at HH Ped ER about 4:45pm, we sat in the flu infected waiting room for 2 hours. An ultrasound was ordered, where the tech commented, I think I see the problem.  Later that evening, Kaylee was given a Dx of appendicitis and admitted to the hospital, where they scheduled an appendectomy for Tuesday February 4th, 2020. Post appendectomy, Dr. Gilbert informed us he removed her appendix and it was large, using words like Impressive, and I had to really work to get it untangled from the colon/intestines. Kaylee voiced a pain level consistent with a 7 in a 1-10 scale for most of the day post op. 

Then came Wednesday February 5th, 2020. Dr. Gilbert asked to speak to Keith and I in another room. As he led us to the children's activity room, I felt an eerie feeling come over me. Before I was fully seated, Dr. Gilbert said, “We found a tumor, its cancer, and she will be having another surgery tomorrow. He said he would not be available to do the Right Hemicolectomy and he brought Dr. Murrell to meet with us. My heart fell out of my chest and blood drained to my feet. I was asking myself if this was really what I was hearing. How could my child, my baby, the most important person in my life have cancer!

Dr. Gilbert said he would go in her room with us and tell her she has a tumor and will be having surgery in the morning to remove a portion of her colon. Her response to this was, So I won’t be able to go to the dance Friday night? And then the tears came, again my heart is hurting. After a few hours passed, we sat with Kaylee by her bedside and told her the carcinoid tumor she had was cancer. She looked at us both with a puzzled face and said, I have cancer? Hmmm, ok. I got this. We can kick this!

 The night was long and not much sleep was had. We were awakened Thursday morning by a few staff from the surgical team. They said they would be ready to take her to Pre-Op about 930am. After a wheelchair ride assisted by a HH staff Mayra, we arrived at pre-op. Approximately one hour later Dr. Murrell walks in and says she has stopped the surgery. She told us she had listened to our questions and concerns we expressed with Stephanie, CRNP the previous day. She also was able to read the pathology report and it was noted the carcinoid tumor was 5cm in size (about the size of a lime) and took all this into consideration. She decided she owed this to us and asked for a consultation with St. Jude’s Dr. Cox. Later that afternoon we met with Dr. Cox and she was able to explain, although this was a rare form of cancer, she has seen other cases and was confident, with treatment would have a good prognosis. This form of cancer is slow growing and we had time to look at everything and get more tests for a baseline.

She explained she would be ordering blood work, an Octreotide Scan, and an MRI with contrast of the liver. These will be done out pt and she said we could go home that evening! Still sore, Kaylee was looking forward to getting home. As we pulled into the driveway about 730pm, a carload of her friends and soccer teammates pulled in behind us. The smile on her face was priceless. I had not seen that smile in days! Then comes Friday, the day of the dance. Yes, Kaylee went to the dance and had a great time. The next morning, she sat on the bench with the MMS Soccer team and they defeated Discovery Middle school 1-0.

As the news spread over the course of the next few days, we received several supportive texts, phone calls, and visits by many friends and family. We then tried to figure out how to share the news. Facebook came to mind, but not everyone has an account. Instagram has the same problem. So with time passing quickly and updates to share, I decided to write this synopsis from my point of view. 

2/10/2020-Update: St. Jude called and they have scheduled the MRI and Octreotide Scan for Feb 19th, 20th, and 21st. All information will be sent to a team of doctors in Memphis, a hub for St. Jude. They will meet and base the course of treatment from the results of the tests. All tests and treatments will be done in Huntsville. St. Jude has an annex clinic here in Huntsville overseen by Dr. Cox. We are hopeful the surgery will be on or around the week of March 3rd, 2020.