07/31/2020 Kaylee Continues to amaze us!

Wanted to update everyone on Kaylee's progress. She continues to amaze us with her drive for success! Kaylee arrived home to a welcome home parade on May 18th, 2020. 

THANK YOU ALL FOR YOUR SUPPORT!!!

After spending the next few weeks at home in recovery (with limited movement- as if she were holding a glass of milk without spilling) she went back to meet with Dr. Gilbert on June 2nd, 2020 to get the "all clear" with no restrictions! At this time (hopefully never) she does not require chemo or radiation, therefore her immune system is not compromised. TIME TO PARTY!!!!

What day June 2nd was; she was also able to enjoy celebrating her 13th birthday (May 31st) with a few friends by taking a limo ride thru the city and a late night sleepover filled with teenager shenanigans ! 

Motivated to get back to full strength, she went on a few runs and got in some much needed (and missed) footwork. On June 15th she was able to take the field and assist with tryouts for her club soccer team AYSO UNITED 07G #weareunited 

We were able to take a day trip to High Falls and Guntersville State Park, where were went for a hike and enjoyed the beautiful waterfalls.  Deer watching at dusk still amazes us!

Kaylee decided she wanted to try "something new", so she reached out to her MMS PE Coach Kelly asking her about trying out for the school volleyball team. Next thing I know, there is a volleyball net up in the back yard (in front of the soccer goal) and she is practicing how to serve overhand! Wait, what? Yes, she was determined to work hard and set this as her next goal. No more sleeping in till noon! On the morning of July 7th she started working out and training with other students at MMS.  Since then she has filled several mornings with volleyball workouts and her evenings with soccer training.  

Throughout these last few months since her surgery, Kaylee's tenacity has resulted in her making a come back on the soccer field and today she was notified she made the 8th grade Monrovia Middle School Volleyball team! She is super excited and looking forward to putting in more hard work to continue to achieve her goals! What will she do next...............

05/17/2020 Surgery was a success, recovery in progress

Kaylee & BABS 05/17/2020

The Right Hemicolectomy (RHC) completed on 5/15/2020 by Dr. Gilbert was successful. He was able to go back through the same 3 holes in her abdomen and just make the one hole around her belly button larger to remove the right section of her colon (approx. 2.5 feet). He said he worked for 45 minutes on her belly button to minimize scaring. The section of colon that was removed is now being sent for biopsy, with results back as early as Wednesday.

Pre-Surgery

Recovery

Battle Scars

Due to COVID-19, Huntsville Hospital has restricted all visitors. One parent at a time may be in the room with her. Keith and I have been "pulling" 24 hour shifts, LOL We have been using the Keep app to document her meds, walks, doctor visits, and any other important information. 

Entrance to Huntsville Hospital Woman's and Children's

Kaylee slept most of the day and night for the first 48 hours. Today, she has moved from ice chips only to liquids and regular diet as tolerated. Her meal this afternoon was applesauce, tomato soup, and mashed potatoes, all of which she has 2 small bites of each. Her pain level is down to a 5 and she is once again watching Tik Tok!

Kaylee Resting

Kaylee trying to video chat while on Morphine

Her X-rays were good as well as her blood work. She is making great progress toward her goals of decreased pain, and walking. Now we just need to work on the eating. Current discharge plan is Tuesday, but at this rate, we may be looking at Monday late afternoon if she keeps rockin' it! Keep them positive vibes coming our way!

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5/13/2020 We have a date for surgery

Things have moved rather quickly since our last blog. Last week, Gov. Ivey opened the beaches in Alabama. (Yes, Alabama has beautiful beaches) This was one of Kaylee's summer bucket list activities she had listed during her last hospitalization. We were determined to make the trip happen! We were able to rent a house on the beach, where social distancing was much easier than in a condo.

On the way home from spending the weekend in Orange Beach, Al; we received a phone call from Dr. Daves of St. Jude. She called to inform us she had reached out to Texas Children's Hospital in Houston for our 3rd opinion, a tie breaker if you will. After reviewing Kaylee's case, they too agreed it was complicated and unusual. However, they put a different spin on the results than what we had been thinking. The tumor being 5 cm has always been the contributing factor in directing the course of treatment. Being she is the only individual under the age of 18 to ever have a documented tumor of this magnitude, there is not much data to go on. Texas doctors based their opinion on the fact that her tumor was not "behaving like a tumor in an adolescent", therefore they recommend the Right Hemicolectomy (RHC). We told Dr. Daves we would discuss the new information and make our decision soon.

Yesterday, we received a phone call from Dr. Gilbert, pediatric surgeon from Huntsville Hospital. He called to discuss any questions or concerns we may have and see which direction we were leaning. Kaylee spoke to him directly and said she thought having the RHC would be best for her. She said she does not want to worry anymore every time she has a stomach ache. Dr. Gilbert agreeing with our decision, said he would get her scheduled soon.

First thing this morning, the call came in from Nikki, Dr. Gilbert's surgery scheduler. She said there was an opening for this Friday and Dr. Gilbert would be on call over the weekend. We asked Kaylee her opinion and she said lets do it and get it over with! So this Friday, 5/15/2020 we are scheduled to arrive at Huntsville Hospital Women's and Children's at 6 am. Unfortunately, due to COVID-19, only 1 parent is allowed to go with her, and NO VISITORS! The surgery is expected to last approximately 2-3 hours. Keith and I will wait out front of the hospital in our vehicle, and they will call with updates on her progress. Once she is admitted to the floor after recovery, we had a reliable resource tell us the other parent can visit when the other parent leaves. Meaning only one parent at a time can be with her. Yes this is unfortunate, however as Kaylee sees it, she is not really missing out on much these days due to the quarantine. She hopes to be fully healed for summer swim parties, sleep overs, and club soccer! #weareunited

This afternoon, Kaylee was surprised by a few of her MMS teachers sneaking on the front lawn to post yard art #southernstrong! Kaylee looked out her window and said, hey is that Coach Kelli? Sure enough, out of the JEEP came Coach Kelli, Ms. Anderson, and Ms. Mays!! Thanks ladies for going above and beyond the call of classroom duty!

4/27/2020 Telehealth St. Jude

We had a good telemedicine visit with the St. Jude Clinic in Hsv today. They said that the cyst on her left ovary was gone. The one on her right is still there, but no change in size so will continue to monitor.  We talked about the course of treatment. St Jude in Memphis is recommending no surgery. The medical board at Huntsville Hospital still recommends surgery. We asked to meet with Dr. Pappau, the lead tumor expert on Kaylee's St. Jude Memphis team to discuss their treatment plan. We discussed our feelings of frustration on being torn with Dr. Daves. We all agreed a 3rd opinion may be the direction we take. There are other highly respected children's hospitals in the US that specialize in carcinoid tumors. A few that we discussed include; Texas Children's Hospital in Houston, Children's Hospital(s) in Boston, Columbus, Cincinnati, and Iowa City. Since there is no hurry to do this surgery and we are taking this time to conduct further research and consult with additional experts.

Several have asked, How is Kaylee feeling now? In her words she feels great! During this pandemic (besides hanging out with her parents) she is occupying her time learning how to play the ukulele, baking/cooking, kicking around the soccer ball, biking, helping/learning about home maintenance, and of course the infamous tic tok! We have our moments, but overall we are enjoying this time together as a family.

Yesterday Kaylee made her first cake! 3 layer Lemon, from scratch icing! It was delicious! So proud of the this girl! 13 is almost here!

4/20/2020 Scan

Today Kaylee goes for a scan of her overaies. Results will be reviewed in our next Telehealth visit with St. Jude.

03/17/2020 THANKS TO YOU ALL!!!

We are continuously amazed at all of the love sent our way! March 7th the Huntsville Havoc had their annual St. Jude fundraiser game. Kaylee was invited to be a bench-warmer during warm-up. Many friends and Team Kaylee supporters came out.

March 9th Kaylee's AYSO United coaches and teammates came out to the Liberty vs MMS game (tied 1-1). After the game Coach David and her United teammates presented her with a blanket made by Coach Parker's wife and signed by her teammates.

On March 10th, Carmon, Emily, Leslye, and Katie participated in a St. Jude fundraiser at Hammer and Stain. Kaylee was able to make it there for a little while and work on her sign.

March 14th, Kaylee was scheduled to throw out the first ball to open the Monrovia Parks and Recreation Association Softball/Baseball season. That event has been postponed but she was very grateful to have been picked by MPRA for the honor.

Just like everyone else we are hunkering down and social distancing ourselves now to wait out this viral pandemic. Kaylee's immune system is good so she doesn't have any special concerns in relation to coronavirus. Our plan is to wait until this is all over, meet with St. Jude, and then formulate a course of treatment (whether it be surgery or more surveillance). I can't help but worry about all of the other kids who are receiving cancer treatment right now that are in danger from this pandemic. Please keep them in your prayers.

Again, the amount of love and support sent Kaylee's way by friends, teachers, coaches, and our community has been amazing! We thank you all for thinking of her ❤

3/6/2020 Enjoy life

So far through this journey we have learned two things, patience and enjoy life!  We spoke with Dr. Daves of St. Jude today. She explained the controversial debate between the experts. Its complicated and clear as mud on the direction of treatment.  Dr. Daves presented Kaylee's case with both St. Jude tumor board and the local tumor board of HH.  Without getting into too much detail on her case today, I will say we are going to take a step back for now.  We, as in Kaylee's parents and you her support team, must take this time to just breathe. Taking a step back will allow Kaylee time to enjoy the things she loves most, soccer and cruising! Everyone agrees there is no need to rush in making a decision on best form treatments.

We are going to enjoy today! Even though we have watched Kaylee play soccer for almost 10 years, somehow her games are more important these days. Seeing her on that field, knowing she is doing something she loves, gives this momma butterflies!  With several more soccer games in our near future and our upcoming spring break cruise, it will be nice to have something to look forward to.

After we return from our spring break cruise she will help her team close out the MMS soccer season  at the County tournament.  Sometime in April we plan to meet with St. Jude doctors again to reevaluate our treatment options. This will give everyone time to review tests, scans, and research.

3/4/2020 Surgery Postponed

Welcome to the world of medicine! We were informed by Dr. Murrell, that the team has decided to postpone Kaylee's surgery until after spring break and allow her time to finish the soccer season with Monrovia Middle School. We are still waiting to hear more official news from the St. Jude team in Memphis. We were all extremely excited to hear this news!

Kaylee took this news to the soccer field this evening, where she played in her 1st middle school soccer game! With both of her aunts, grandma, and parents in the stands she scored 2 goals and had 2 assists! Monrovia laid out the mercy rule on Randolph 10-0, GO HAWKS! To say she is happy is an understatement! 

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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