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.