Life Is Good!

Fall break this year was much different than years past. We spent the week in Memphis, Tennessee at St. Jude Children's Research Hospital.  We arrived in Memphis on Sunday October 4th, 2020 to pregame for the dreaded week that was ahead.  We enjoyed sightseeing downtown and dinner on Beale Street.

 The following morning we checked into St. Jude where we were all COVID tested.  The day was filled with appointment after appointment meeting various nurses and doctors. Kaylee's IV was started and multiple vials of blood were drawn.  Later that afternoon Kaylee was injected with a green dye like medication. This dye is currently used in conjunction with a special light to assist in locating liver tumors and is being researched by St. Jude to assist doctors in locating other tumors during surgery. Spoiler alert-Kaylee's dye did not light up during surgery!

IV Started on Day 1

Medicine Room for the Green Dye

On the morning of October 6th, we walked over to the hospital to Pre-Op from the Tri Delta Place where we were staying. Kaylee was given a purple warming pad, they call The Hot Dog. Keith and I were able to stay in pre-op with her and then I was able to dress in scrubs and go with Kaylee into the operating room. Soon she was given the "sleepy milk" and I was escorted to the waiting room where Keith and I would spend the next 4 hours.

Hot Dog warming pad before surgery

The nurse from the operating room called us every hour to give us updates on the progress. Dr. Murphy came to the waiting room to explain how the surgery was a success.  They were unable to do the surgery laparoscopic due to the complexity and size of the mass.  Her main incision scar is most similar to that of a C-section.  He explained her mass was large and grew directly inside the Right ovary. He described the removal process was like peeling an orange and removing the inside, with the skin peel needing to be sewn back together and formed to resemble an ovary. During surgery they discovered 2 additional abnormal cysts, of which both were removed and biopsied. He felt confident he was able to save her ovary and there was still good blood flow. A six month follow up will be needed in Memphis. 

Surgeon's Drawing of Kaylee's ovaries

About 1pm they made the final call that welcomed us back to recovery. We were able to see Kaylee as she was coming out of anesthesia. WOW was she funny! She had us laughing and we needed that.  Soon we were all escorted to the 5th floor Room 14. This is where we would spend the next few days.  

The next 24 hours would be spent resting and controlling the pain. During surgery they put in an epidural to assist with pain control and this was still in place which allowed them to administer medication directly into her spine. This left her unable to move her legs, which she did not like! She was soon surprised by a visit from Puggle the therapy dog. We learned Puggle and Asteroid (who works at Huntsville Hospital) trained together!

Puggle- St. Jude Therapy Dog

The pain management team came to visit the next day and evaluate her progress. They were pleased with the way she was recovering. They choose to remove her epidural and monitor her progress with oral medications. Soon she was up, walking the hallways and requesting Starbucks!

Lap 1 Day after surgery

One of Kaylee favorite windows to lookout

Being escorted to Starbucks

Enjoying a Starbuck Refresher

So all that excitement and exercise wore this 13yo out! She spent the next few hours resting, texting, and watching tik tok videos!

Being comforted by her soccer quilt

Later that afternoon the surgeon came to talk about her progress and said if she felt up to she could be discharged to the Tri Delta Place were she could continue to recover.  We would soon be wheeling Kaylee to our hotel room where we spent the next few days watching movies and resting. 

Kaylee getting exercise

Our view of The Pyramid at Bass Pro Shops

Our next appointment was scheduled for 2pm on Friday October 9th at the solid tumor clinic. We would spend the next few days walking around campus and encouraging Kaylee along as she continues to get stronger everyday. 

Our favorite dining table at St. Jude

Early on the morning of Friday October 9th, while eating breakfast downstairs at Tri Delta Place, my phone rang. It was the St. Jude clinic nurse asking us to come in earlier than our 2pm scheduled appointment. My heart dropped thinking is this good or bad news. So I asked the dreaded question, did the pathology report come back? She whispered, Yes, and it was all BENIGN!!!! Overjoyed, we went up the room, started packing in hopes to be released home later that day. During our clinic visit with the surgeon he was very pleased to be able to share the good news and explain to Kaylee she still has a 6 week recovery ahead of her. This would put stricter and longer limitation on her functioning levels, as this was a much more invasive surgery that the two previous. We were handed a surgical pathology report that included pictures of the cyst and a diagnosis of Mucinous cystadenoma of the ovary (9.0 x 4.7 x 2.0 cm), which translates to larger benign tumor in our vocabulary!!!

Clinic visit before heading home!

We couldn’t have asked for a better result/gift! The few weeks leading up to this trip had been tough. That mass on Kaylee’s ovary had grown larger than what we initially thought. One of her docs here was concerned that this was cancer that had metastasized from her original tumor. In fact, this mass was only inches away from her original cancer. We had been pretty concerned that her cancer was back. Now that this cloud has been lifted from our family, it’s hard to explain how we feel. We should be walking on air (and at times we are). Sometimes we have to remind ourselves that all is good. You don’t have to worry today. Our life is back to the new normal with work and school. We have been enjoying everyday, life is short!

Kaylee spent this Saturday at Lyons Farms with some of her soccer family.

Enjoying a turkey leg at Lyons Farms

The love that has been sent our way has been overwhelming! We couldn’t possibly begin to thank everyone here. We do greatly appreciate all of the prayers, thoughts, kind words, food, cards, and many other things that people have sent our way. The Southerns know we are blessed and we appreciate you all greatly! #southernstrong

9/16/2020 Memphis Bound

On Tuesday 09/15/2020, we started the day with an 8AM appointment at Tennessee Valley Gynecologic Oncology with Dr, Kirby. The MRI results noted "the cyst demonstrates and enhancing, mural nodularity within the caudal aspect of the cyst. The nodules demonstrate no evidence of fat signal, calcium or ossification. A representative mural nodule measures approximately 9 mm in greatest dimension. There are thin (1 mm), enhancing septations within the superior aspect of the cyst."

So what does all that really mean? She has a cyst on her right ovary that needs to be surgically removed. Dr. Kirby has been working closely with Dr. Daves at St. Jude Clinic-Huntsville. Together with her team of doctors at St. Jude-Memphis, they have developed a treatment plan.  Although we don't have all the answers, we feel confident the doctors will do what is best for Kaylee. They are planning to do the surgery laparoscopic, unless there are complications after they begin. Since she has had two recent surgeries, there is a lot of scar tissue to work around. They will bag the specimen and send for biopsy. The pathology results will then dictate the next step in treatment. This should be an easier recovery than the right hemicolectomy. 

Kaylee being silly!

Recent changes at the Memphis campus now allow 2 parents to accompany the patient. This news was a relief to all of us. We are scheduled to arrive in Memphis on October 5th at 11AM where we will all three be COVID tested and complete registration.  We will have a place to stay there on campus. Surgery will take place October 6th and she will stay the night in the hospital that night. If all goes well, she will be released and stay with us in on campus accommodations Wednesday night. On Thursday, she will have an appointment with the team and if all looks well, she will be discharged home.

Kaylee made this meme after walking out of Dr. Kirby's office!

Kaylee had a volleyball game Tuesday night and we talked with a representative from St; Jude to confirm the above information while Kaylee warmed up for the game. It wasn't until after the game, that the most amazing thing happened. Sparkman Middle's volleyball Coach, Kayla Jefferson and the entire 8th grade team, approached the MMS girls and they presented Kaylee with gifts and a huge card with the girls' favorite motivational quotes. It was a beautiful, touching moment and the best display of sportsmanship we had ever witnessed. What no one knew, is that day Kaylee was told that she will for sure have a 3rd surgery at St. Jude Hospital in Memphis soon. The love that was expressed to her was priceless.

Kaylee holding the gifts and card from SMS volleyball team

As for Kaylee, she is in good spirits overall. Some days are more difficult that others. We often talk openly as a family about our feelings and I believe this helps. During the weeks prior to surgery, Kaylee will be able to finish her school volleyball season and play in a few more club soccer games with her AYSO United team.

AYSO UNITED 07G

Thank you all for your support during this journey!

#southernstrong

9/8/2020 Uncertainty

St. Jude visit on 8/28/2020 with Dr. Daves did not go as we expected. The scans showed the cyst in her right ovary has increased to 6.5 cm. Dr. Daves said she didn't think this was anything "scary" and we could look at taking a birth control pill to decrease the size and ask an OBGYN to review scans. After a review of her scans, the OBGYN oncologist asked to see Kaylee in his office.  On 9/3/2020, we met with Dr. Kirby, at Tennessee Valley Gynecologic Oncology. He explained, "the cyst is not consistent with a simple functional ovarian cyst. Given the complexity as well as her previous appendiceal tumor discussed potential for metastatic disease to the ovary as well as other ovarian neoplasms." He ordered labs for tumor markers and an MRI of the pelvis "to better characterize the internal nature of this mass and rule out metastatic disease."

Needless to say, this was not the news we wanted to hear. Kaylee did not take this as well as she did the first time. With all this unknown ahead of us, came a lot of tears. After an afternoon of napping and getting a reboot to her system, she sprung back into the game!  That evening she went to MMS to play a  volleyball game and 8th grade recognition night. We could not have been more proud of Kaylee that evening! Knowing all she had went through that morning and to get back out on the court with her team like everything was normal. We enjoyed a family dinner that night at Outback, where Kaylee enjoyed a filet mignon and sweet potato.

Since then, she has had a positive attitude and enjoyed spending time doing the things she loves. Saturday she hung out with her parents running errands and shopping. Sunday started off with her playing as a guest player with the AYSO United 08G's. With a big win (9-1) vs Homewood 07, she came off the field feeling great!  That afternoon the shenanigans began! She and a few besties hit Bridge Street dressed in fun wigs! 

That evening, they enjoyed watching Mulan and eating pizza at a friends Dive-In Movie Party. Monday we headed out early to Guntersville State Park where the girls went zip-lining at Screaming Eagle. One more thing for Kaylee to check off her bucket list! Afterwards, enjoying lunch at a local Mexican restaurant.

 

Although we do not know what the future holds, with this kind of support and attitude, she can conquer anything! The uncertainty is what makes this most difficult. As parents, we will continue to be positive and follow Kaylee's lead. She has set the pace for this journey and as strong as she is, its made it easier to follow!

08/23/2020 Scans Tomorrow

 

School in Kaylee's world looks a little different in 2020! Her back pack was replaced by a Chromebook and her classmate is hairy and has 4 legs! She has accepted this new way of learning, although being with her friends in her last year of middle school is where she would much rather be!  Tomorrow Kaylee will be starting her day a little different than most.  On 08/24/2020, she will be headed to Huntsville Hospital in the early morning hours for a round of routine CT Scans.  Due to the COVID-19 one parent rule, Keith will accompany her on this visit. I am still recovering from my appendectomy last week (08142020). Who would believe my daughter and I would both have appendicitis within 6 months of each other! Only in 2020! Thanks for all your support and positive vibes!

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.