St. Jude Huntsville Appointment 9/14/22

Kaylee had her regular check up appointment at St. Jude Huntsville September 14th. It was just a physical exam and time for us to check in with them now that they are her quarterback for treatment. We all agreed to the yearly timeline for scans instead of 6 months. Kaylee will have her next scans (will be an MRI) in March or April. After that, we will meet back at St. Jude Huntsville to discuss the results and do lab work where they will look for potential tumor markers.

All in all, it was a great appointment. They gave Kaylee a t-shirt and invited her to an event for St. Jude kids next week at Insanity Skate. 

Kaylee is doing awesome right now!. She is a sophomore at Sparkman High School. She's currently playing two sports, flag football for SHS and club soccer for North Alabama Soccer Coalition. Her flag football team won it's first two games this week!

 

Wonderful News!

Kaylee went in last week for her 6 month MRI earlier than was planned because she was experiencing a little intermittent abdominal pain. She had her MRI here in Huntsville with a follow up appointment at our local St. Jude affiliate. The scans would also be reviewed by Dr. Murphy and his team at St. Jude in Memphis. We were all very nervous about this because last time they let us know they were watching a spot on Kaylee's reconstructed ovary and she had complained of some pain.

The news we got could not have been any better!!!

The spot they were watching turned out to be a follicular cyst (perfectly normal) and has all but disappeared. She is still cancer free and everything looks good! She will transition from following up in Memphis to follow up here at the St. Jude affiliate in Huntsville. Kaylee won't have to have any more scans for a year.

We are all very relieved and excited about this news! Kaylee was almost giddy when we told her while eating tacos at her favorite taco place, Mi Mexico Comida Casera. You could see the weight lifted off her shoulders. Thanks everyone for your continued thoughts, prayers, and support!!!

Kaylee is having so much fun this year in soccer! She is playing striker for Sparkman's JV team and loving it!

This is Kaylee's boyfriend Caden. They sure make a cute couple!

In December Caden and Kaylee ran in the St. Jude 5k in Memphis. Together they raised over $3000 for St. Jude!

Not the Best News/ Not the Worst

We traveled to Memphis Thursday 11/11/21 for a routine scan and visit with Kaylee's doctor at St. Jude. It was Veterans Day so Kaylee didn't have to miss school. We were hoping to not have to come back for a year or possibly get transferred to follow-up at St. Jude Huntsville. Unfortunately, you don't always get what you want. St. Jude found a spot on Kaylee's reconstructed ovary that they want to continue to monitor. It is 2 cm and has grown since the last MRI. Dr. Murphy feels that it is another benign tumor. The new plan is to come back in 6 months for more scans. If it continues to grow, we will have to discuss surgical options.

Needless to say this is not what Kaylee wanted to hear. However, she took the news like a trooper. She continues to amaze us! Don't know how we ended up with such a great and resilient kid!

                                                                        Kaylee showing off her fancy socks

                                                                            

                                                                    Ready for MRI

In other news, Kaylee tried out for high school soccer this week and made the team. She will play on the JV team this year. We are super proud of this kiddo!

                                                        

St. Jude Fundraiser

Kaylee is planning to run in her 1st St. Jude 5k in Memphis on Dec 3rd. She will be running through the very campus where she had surgery and recovery. We are so very grateful to be giving back to St. Jude! She still has a few visits to St. Jude prior to the run; where we are hopeful for continued good progress. 

Kaylee & Shasta

Those of you who know Kaylee, know she loves to people! She loves hanging with her friends. She is looking forward to attending Sparkman High School and playing club soccer this fall.

Kaylee & Friends

May 2021

If you want to donate, here is a link to her page:

https://fundraising.stjude.org/site/TR/Heroes/SJMMW?px=7116411&pg=personal&fr_id=131089&copy_link_share

St. Jude Visit

We made our way to St. Jude last Thursday and Friday. Kaylee had bloodwork Thursday and then several appointments Friday. We got a phone call from St. Jude while we were in route to Memphis and the lady happened to ask if Kaylee had braces (she didn't have them the last time we were there). They said Kaylee had to have the wire removed from her braces before the MRI. Luckily, the St. Jude dentist was available to remove it first thing Friday morning. We stopped and ate lunch in Germantown with Amanda and Jeremy at The Commissary (great BBQ). Then Kaylee had her bloodwork done at St. Jude.

Friday morning was busy. Saw the dentist first and got the wire removed. Then, Kaylee went to imaging where she found out she would have an IV. They originally told us she would not need one. When she heard she had to have an IV she said "OK I'll take it like a champ". Then came the long wait to meet with the doctor and hear the results of the MRI. This part was a little stressful as it took a while to get the results back. 

But, she received great news! The MRI looked good. There was no sign of cancer. Dr. Murphy wants to keep a close eye on how her reconstructed ovary is healing and has asked us to come back in 6 months. He also asked us to follow up with Kaylee's oncologist at St. Jude in Huntsville. All in all, a very good visit!

Kaylee refers to the scrubs as her Gucci pants.

Visiting the St. Jude Dentist

The Champ getting her IV

The reward for such a busy morning was sushi.

Their food is good!

04/16/2021 St. Jude Follow-Up Visit

This April 22nd and 23rd, we will make a short trip to Memphis for Kaylee's 6 month follow-up. She will have some blood work, an MRI, and a visit with her doctor, Dr. Murphy. Only one parent is allowed at a time on campus (due to Covid) but they have given us the go ahead to stay off campus in a local hotel so we can all three go up there together. Kaylee is nervous about this visit. She said every time she gets new scans she has to have another surgery. We have learned that we never know what is going to happen but are very hopeful that she gets the all clear this visit.

Kaylee's most recent soccer pics

Kaylee finished her middle school soccer season recently. Her MMS team came in second in the county. She is looking forward to playing high school soccer for Sparkman High next year. She has her 14th birthday coming up and we have some vacation plans for the summer. We are all looking forward to good things in 2021!

One Year Anniversary

February 5th, 2020 (one day after World Cancer Day) our little family's world changed. That was the day we found out Kaylee had cancer. We will never forget how scared we were when Dr. Gilbert broke the news. What did we learn? We learned that Kaylee is a very tough kid. She was our strength when we wanted to worry and be sad. Kaylee wasn't going to have that! Three surgeries later she is doing great both physically and mentally. We are a stronger family for having gone through this for sure. We couldn't be more proud of this kiddo! A cancer diagnosis and three surgeries in the middle of a pandemic is a lot. But we know we are very blessed and grateful for each other and the way things have turned out.

Kaylee has went back to life as normal and that is definitely the way she wants it. She is playing soccer of course. She currently plays for the Monrovia Middle School team. Kaylee also has earned a spot back with the Alabama Olympic Development Team. She will represent our state when they play against other states in the 2021 ODP Inter-Regional Showcase in Memphis. Kaylee will go back to playing for her club team AYSO United when school ball is over.

Kaylee is in the process of signing up for high school classes (I Know Right!!!). She plans to take College Prep classes and one AP class (History) next year at Sparkman 9th Grade School. More than anything Kaylee wants normalcy (or our new version of it). There are a few things we have to take care of. Sometime later this spring Kaylee will go back to St. Jude in Memphis for more scans and decisions will be made by her doctors there regarding how to best follow up with her.

What does the future hold? No way to be sure but we plan to assist Kaylee with fundraising efforts for St. Jude. Look for more on that later. We are a St. Jude Family now and will always have a relationship with them. Our debt of gratitude is impossible to measure.

Here's to a better 2021 for all!!!

Kaylee in her United kit

Kaylee playing volleyball for MMS

Kaylee loved performing with the MMS Choir

Singing with the choir

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!