Kylie is having a pretty good week. The team is still monitoring her while they determine the exact cause of her GI issues. She has been busy playing games and making crafts with the nurses and making slime with Child Life. They are starting her feeds again and are hopeful that she will tolerate them.
Kylie continues to struggle with the side effects of her treatment 😞. The team has paused her chemotherapy for the week as they work on getting her feeling better.
The missing piece before she can get home and resume treatment is determining exactly why she is retaining fluid. Kylie has had several ultrasounds and scans over the past couple days as the doctors continue working toward a solution. The team believe they have it narrowed down to an issue with how her liver is currently functioning.
Kylie remains in good spirits! She has been making slime and playing board games everyday with Child Life and watching Disney movies with Kirsten.
Kylie has shown improvement each day this week. The team is still working through some concerns before discharging her. We are hopeful that she will continue to show progress and be discharged in the next couple days.
Kylie has shown steady improvement since last weeks blood transfusions and stomach scope.
She worked through the rhinovirus and the sporadic fevers that came with it!
Her blood work has looked much better the past couple days and she was able to receive chemo last week and is scheduled for another round of chemo either tomorrow or Friday.
Nutrition is happy with her progress and she should be back to receiving her full amount of calories within the next day or two.
There is some fluid in abdomen that has to be dealt with.
Discharge is starting to be considered and we hope she is able to make it home for the weekend!
Kylie is still in the hospital….. Kirsten posted this picture…. Kylie loves the Disney movie …Frozen!!! Kylie can’t wait for the first snow!
Praying she can get home soon!!!
A few days ago, Kylie was admitted to the hospital due to a bleeding issue. She was taken to Pittsburgh Children’s hospital to determine the cause.
Kylie is feeling much better than when we arrived. She received blood and platelet transfusions and her blood work looks much better. She had a stomach scope to determine what the source of bleeding was. We are thankful that the source was very minor. She is recovering from the procedure really well and with another day or two of rest her stomach should be healed.
Kylie loves receiving messages from everyone. If you would like to send her an e-card:
Kylie McMullen
Children’s Hospital of Pittsburgh
Updated: Room 914
Unexpected trip to the ER last night. Kylie’s NG tube came out and the local hospital did a great job putting it back in place. Kylie is back home now resting. So thankful they did not have to go an 1 1/2 to Pittsburgh!!!
…Kylie’s Chemo treatments were paused until her WBC count could recover. We are so thankful that now her counts look great and this past Thursday…she resumed her chemo treatments and completed her 25th Chemotherapy!!!
I enjoyed my time with the family. I was there 5 days.!!!
Cam and I went out to lunch one day.
Quinn and Kirsten had time to go to the Harmony Fair together.
We wanted Kylie to have a fun safe outing… as her immunity is low and we did not want to expose her to a lot of people. So we went to Hite’s Farm. It was perfect in many ways… great weather.. not crowded… we even had our own personal hay ride ( with no other people) to the pumpkin patch. We had a fun time in the corn maze!!! It was the perfect outing!!! We also got 2 huge pumpkins!!!!
Sean got to run another Mudder at Slippery Rock and of course Rob was his photographer!!!
I also got to meet Jenny, who brought some delicious meals for the family to help them through this week!!!!
Kylie has been working hard completing her virtual mathematics and writing assignments while she is away from school. She will remain virtual through the remainder of her frontline treatment. Kylie enjoys adding spontaneous karaoke sessions to the live sessions she participates in each morning
For those who are wondering what ever became of the fevers. The hospital never found out why… and we will probably never know!
I will be heading out tonight to help out again for a few days!!!
Kylie has been discharged from the hospital!!!
I wanted to pass this sweet prayer and note from Jenny…. to all who are following this blog . It really captures my thoughts and prayers perfectly. It was sent yesterday before her scans were done.
Loved ones, I ask that you blanket this precious little warrior in prayers and thoughts today, and every day, but today is especially important as she undergoes scans to check the progress of her treatment. Let’s be in agreement that her body is cancer free and will remain so, that she will maintain the strength and endurance to complete her treatments and live a beautiful and blessed life in remission, that the doctors will have the wisdom to continue to design her treatment plan so that it conquers this rare disease and that she will be a vibrant light unto all who come within its grasps. Godspeed healing to every single cell in her tiny body and multiply those white blood cells to shield her from all of the illnesses that are in our environment, make all of the side effects subside and enable her to feel well and whole again. Bless her family and comfort them and give them assurance that she is healing and will gain strength and will fiercely overcome this horrible disease . And so it is . Amen. Send all positive vibes, love, prayers as often as you think of her and her family 💜 .
Today we received the results from Kylie’s 24 week scans.
We are so thankful to those of you who have been following our journey and upholding us in prayer.
She remains No Evidence of Disease!!! We are thrilled with the results and are happy to hear that the treatment plan that she is following continues to work.
Kylie will continue with frontline chemotherapy for at least another 18 weeks before transitioning to maintenance chemotherapy.
The doctors are still determining the cause of the most recent fevers that she has been experiencing. They believe the cause could be adrenal insufficiency from the radiation she received. They continue to run tests and hopefully we have an answer soon. Until then, the team will continue to monitor her.Kylie still has a long way to go in her treatment… but we are rejoicing in this latest news!!!!
I arrived yesterday to be here with the family … and we were having a great time. Today we were blowing bubbles outside… getting pumpkins ready to paint…making cookies… doing stickers….just enjoying being together…
Kylie went to sleep. We ate dinner and Kirsten and Sean went in to check on Kylie and she had a fever of 102… It was quickly decided that she needed to go to the ER at the local hospital… they put Kylie on an antibiotic and transported Kirsten and Kylie by ambulance to Pittsburgh Children’s Hospital.
Kylie was sobbing as she left… so I told her I wanted to pray for her right there before she was driven away…..for her fever to break and for the doctors to have wisdom and that she would know God was with her.
Please keep her in your thoughts and prayers tonight ❤️
Kylie has been discharged!
Her white blood cells significantly improved since yesterday morning! The team felt comfortable with her improvement over the past 48 hours and the conversation quickly turned to getting her home.
She will travel back to Pittsburgh on Monday for her 24 week CT scans. These scans will show if her treatments are working!!!!
Kylie will remain inpatient until her white blood cells and ANC show that they are recovering. After eight inpatient days of having 0 white blood cells her blood work came back this morning at 0.8. Although this is a small improvement it is progress in the right direction.
I will be heading out to Sean and Kirsten’s home on Friday. If Kylie is still in the hospital , I will be helping out with Cam and Quinn.
There are two things Kylie asked me to bring. She wanted me to bring some crafts and chocolate chip cookies!!!!!
Kylie’s ANC continues to stay at 0. They started a new medication to help promote white blood cell recovery over the weekend. Hopefully the medication helps and we see an improvement in her counts over the next couple days. Until they recover, she will continue to receive antibiotics and the team will monitor her.
I really appreciated Tim’s sermon on Sunday. It was a great reminder … that sometimes we feel like we are in a free fall…… but God’s hands are all over us and His Presence is there!!!
UPDATE:
Since radiation, Kylie has been dealing with neutropenia. The team plans to monitor her while her counts remain low. Her immune system is extremely weak and as she continues to heal from the radiation treatment we hope her body begins to rebound quicker.
Today was a busy day! Kylie had her ng tube replaced, she received a platelets and blood transfusion, she completed her 23rd chemotherapy, and she also got to visit with Quinn and Cam!
Hopefully her counts begin to recover soon and she can get back home!
Kylie is back in Pittsburgh with a fever. Her temperature has been hovering between normal and 100 since Sunday and this morning it spiked above the threshold needed for an ER visit. After a short stop in the ER for blood work and vitals she was admitted for monitoring, Tylenol, and antibiotics.
Thankfully, her temp is trending back towards normal and they will monitor her until the blood work comes back.
These pictures just bring tears to my eyes as Kirsten and Sean have shared the positives of the last 2 weeks of Kylie’s hospital stay and all those God used to help bring her home!! I love the idea of the healing garden too!!! Just look below to see the pics.
Kylie had the opportunity to go down to the Dream Big Studio again! This time she met with some amazing Broadway performers who are part of Broadway Hearts 💕 She picked of a few songs from Frozen, Moana, and Encanto and they sang and talked to her about the movies 🦄 🎶 💜
Kylie has been in the hospital almost 2 weeks. Today was a big day for Kylie, she was invited to cohost bingo in the Dream Big Studio at the Pittsburgh children’s hospital…..She loved it 🥰
Kylie is out of the PICU!
Erin and Karis and their families came to visit Rob and I for 2 weeks… I have been lax in keeping up with the blog with all the excitement of our together time. So below is a synopsis of the last 2 weeks. We are so thankful that God is using the doctors and nurses to nurture Kylie in her hills and valleys.
She has had really productive days. She was allowed to start eating and drinking and immediately asked for a popsicle and apple sauce. They removed the abdomen drain that they placed during her radiation treatment. Her breathing continues to improve and she is requiring much less oxygen than previous days. She met with OT & PT to help stretch her muscles and they provided some ideas to promote her getting out of bed. She felt good enough to go on a wagon ride and she took a nap in the sun room 😊.
Kylie received her 21st chemotherapy treatment on Thursday…..This marks the halfway point of her frontline treatment!!
She continues to show improvement and the team has started discussing discharge from the hospital ….over the next couple days if she continues to improve each day.
She met with music therapy and sang Encanto songs, physical therapy came to help her stretch her legs and go for a walk, she played bingo and made slime with childlife, and she ate pizza and a popsicle for lunch. They resumed her tube feeds to check her tolerance (she’s doing great!), they continue to reduce her oxygen, and chemotherapy went as expected.
. Eddie ( the dog) came and visited with her and Today she went to the healing garden with a couple nurses to blow bubbles and play a board game.
Our prayer is that Kylie’s oxygen levels will improve at night so she can go home.!!!
Kylie was admitted with an infection on Thursday afternoon after arriving to her chemotherapy appointment. The team chose to delay her chemotherapy while they determined the origin of the infection. While waiting for the results, Kylie’s oxygen level & blood pressure dipped and she was put on a breathing tube to help keep her comfortable. Thankfully, the team found the source of the infection this morning and have adjusted her antibiotics to target the exact infection she is fighting. They also tested her breathing twice today and determined that the breathing tube was unnecessary and it was removed earlier this afternoon.
Kylie is feeling much better than when we arrived. She is acting more like herself today and has been playing roblox, watching YouTube, and resting comfortably. Hopefully over the next couple days the antibiotic takes care of the infection and she will get to go home.
We are thankful for the hard work and amazing care that Kylie continues to receive. Thank you for all the love and prayers!!!!
I went on a vacation with Erin and Karis and their families in Delaware and found out yesterday that
Kylie was admitted to the PICU after arriving to her chemotherapy appointment. Her blood pressure and oxygen levels were lower than normal and the team believes she has an infection (possibly in her broviac or abdomen drain).
She is now on antibiotics and will be there until she finishes the antibiotics.
Two days ago Kylie completed her 20th chemotherapy treatment . Her doctor is happy with how quickly she has recovered from radiation. Her appetite is improving, she is relying on her ng tube less, and her blood work looked great this week!
After chemotherapy, Kylie went to Lydia’s to play and hangout at their pool before the storm ☔️ ⛈
My visit this weekend was short but sweet. I had fun with Kylie and Quinn making unicorn headbands… and just had fun hanging out together. Surprisingly, Cam wanted to go home with me when it was time to leave!!!
I came home with joy in my heart… that in spite of everything that has happened… the family is doing well and we were able to have fun and laugh and make the most of the time we have together!!!
So I arrived at Sean and Kirsten’s home to see them of course … but it was also to allow Sean to be free to do the Rugged Maniac X challenge which he signed up for a year ago.
Sean completed the Rugged Maniac X earlier today as part of His Beads of Courage Summer Challenge.
When Kylie was first diagnosed with Rhabdomyosarcoma Sean was asked if he would like Kylie to participate in a program called Beads of Courage. Since enrolling, she has received dozens (200+ and counting) of beads that show her story of strength, honor, and hope told in many colors and shapes.
Sean joined the Beads of Courage Summer Challenge because Kylie really enjoys the program and he wanted to give back to the program. All funds raised benefit Beads of Courage and their mission of hope and healing for kids coping with serious illness.
Side note: Rob Quanstrom was Sean’s photographer!!!!!
If you would like to help Sean meet his challenge of $100.00 this is the link below
https://beadsofcourage.networkforgood.com/projects/165912-sean-mcmullen-s-fundraiser
The family is all together again at home. So they celebrated Kylie’s completion of radiation with a beautiful cake!!! Kylie’s smile says it all!!!
A group called … Feel Better Friends….. made Kylie the unicorn and doll. So nice to see people reach out and give of their time to brighten up a child’s day!!!
Kylie will have a break for a week and then she will continue with 23 more weeks of Chemotherapy. After that then she will have a year of maintenance therapy.
I will be going out to see all of them this Friday!!!
Thank you to the medical team for taking such great care of her throughout her cancer treatments. We are blessed that she is receiving such great care. The team has also decided that Kylie is doing well enough to be discharged today!
Today is a day to celebrate!!! Kylie completed her last of 30 radiation treatments. The journey wasn’t as smooth as we hoped it would be, but Kylie navigated the ups and downs gracefully and persevered through all of the setbacks.
Kylie received a sweet send-off by striking a gong to end her radiation treatment.
It is a blessing to be able to go home for a week …. And then she resumes her weekly outpatient chemotherapy.
She is feeling much better. Her blood work and vitals have returned to normal. She has been keeping busy painting, singing, and playing instruments.
The hospital has started allowing siblings for short visits. Quinn and Cam got to visit Kylie for the 1st time yesterday. Quinn even got to make slime with Child Life!
Kylie is nearing the completion of her radiation treatments! She completed her 26th treatment Friday and is scheduled to finish next week!
The doctors are pleased to see the progress she has made over the past two weeks. Her blood work and vitals look great and they have relaxed how often they are monitoring her throughout the day. Her appetite is starting to return and they have started to reduce her TPN. They are still monitoring her abdomen as she progresses through radiation and the team is hopeful that they will be able to remove the tube after radiation is complete.
Kylie loves the music and art therapy and continues to keep smiling !!!!
Kylie continues to improve each day. She is moving much more comfortably and her breathing and oxygen level are much improved.
She completed her 21st radiation treatment and they removed the chest tube they placed last week.
Kylie met with Make-A-Wish in the spring to brainstorm ideas on a potential wish. She immediately started talking about the playhouse that she has been drawing since she was old enough to hold crayons. We are excited that they will be making her wish for a playhouse a reality!
This summer, Make A Wish has a goal to grant as many wishes as possible for kids like Kylie who are waiting to have their lives transformed with a wish. 💙☀️ From puppies and playsets to outdoor adventure gear and beach vacations, Make A Wish needs YOUR help to make this summer brighter than ever for local kids facing the unimaginable. With your support, you can give kids like Kylie – and hundreds of other local kids – a better chance of recovering from critical illness. YOU can transform lives. Will you help grant a summer wish before July ends? Donate now at wish.org/greaterpawv/summer-wishes
Kylie completed 20 radiation treatments yesterday. What a soldier she has been . I often wonder if I could have done what she has done with such grace?!
I am home from Maine and wow… did we see dark skies and beautiful stars.
Sean posted this quote a few days ago. I love it!!!
When I was visiting Kylie a few weeks ago.. Sean and I had a discussion about how we look at a situation or circumstance….do we look at it from our perspective or do we see it from God’s perspective ? Circumstances can be dark…but there can be good that comes out of it. It is all about perspective.
Again this is Sean’s latest post I just saw when I arrived home….
Kylie continues to show progress. She received blood and platelet transfusions .Her vitals have continued to improve and they have started to reduce the amount of oxygen she is using.
She is sore from the previous procedures but is in good spirits. They continue to drain fluid from her abdomen and lung and believe the concerning spot in her intestines has healed.
4 hours ago Sean posted this
Kylie had two tubes placed yesterday afternoon to drain the fluid from outside of her lung and stomach. They removed the majority of the fluid and left the tubes to continue draining any additional fluid that accumulates.
Since the procedure, she looks more comfortable and her vitals have improved. We appreciate all the love and support everyone is sending Kylie!
I am in Weston, Maine for the July 4th at Camp Living Waters visiting Erin and Dean and kids. We are on a lake and this is a nice break …I have limited access to good internet service and this is the latest post I got from Sean recently to pass on.
Update on Kylie
She was admitted on Wednesday morning for a fever. When she got to her room they did a quick assessment and noticed that her oxygen level was lower than it should be and her respiration rate was slightly elevated. They took an x-ray to check her ng tube placement and noticed that she has some minor fluid on her lungs and they also noticed a small spot in her intestines that they wanted to investigate further. To allow her intestines time to heal and reduce the nausea that she has been dealing with they have switched her to IV nutrition for the remainder of her radiation treatments.
After minimal improvements over the past 48 hours they adjusted Kylie’s medicine, gave her a blood transfusion, and took addition x-rays and a CT scan. She has also been moved to the ICU to be monitored more closely. The doctors have a plan in place and we will be patient as they adjust her medications to help her feel better.
As always , she is in good spirits and continues to smile through each obstacle.
Kylie spiked a fever this morning before her radiation appointment. She was admitted to the hospital for monitoring. They gave her fluids to help with hydration and they are considering additional changes to her nausea medication. The side effects from radiation have slowly increased over the past couple weeks to the point that Sean and Kirsten were struggling to manage them at home. Thankfully, her temperature has returned to normal .
Her intestines are under a lot of stress from the radiation causing her formula not to absorb properly. Things are being adjusted and inpatient is where she needs to be while they adjust her nutrition. They are switching her to IV nutrition.
It takes some time to adjust to the right amount and then they need to train Kirsten and Sean how to administer properly.
Kylie is on track to get radiation tomorrow.
Sean said that he and Kylie will just be hanging out in the hospital instead of her bedroom!!!!
Kylie completed her 17th chemotherapy treatment last week ….and will begin her 4 th week of radiation tomorrow. She is still battling fatigue and nausea. They met with the supportive care team to adjust her medications to give her better coverage throughout the day.
She has received a new feeding formula and hopefully she will be ok with this formula.
Kylie is also receiving IV fluids at the radiation sessions to combat dehydration.
The radiation is tough on her stomach and intestines. She is almost half way through radiation. Praying for Kylie as she endures this rough patch. Praying for Sean and Kirsten as they encourage her through this.
In spite of all that Kylie is going through … she still manages to smile. Love you Kylie!!!
I am home now after a good visit with the family.
Kylie had a break from the radiation over the weekend was nauseous and tired… but did manage to get out with us to the park.
Last night Kirsten shared that Kylie has been very nauseous and only got 2 of the 4 feeding supplements she usually gets. She so violently threw up the other day…. that her feeding tube came out and she had to get it reinserted yesterday. They do this under anesthesia.. so fortunately they were able to do this simultaneously with the radiation session.
Now Kirsten and Sean have the added stress of not being able to get her feeding formula… the warehouse is out. Today will be a day of getting that straightened out… many phone calls.
Your prayers are coveted at this time with these many issues.
I have arrived in Pittsburgh!!!
Kylie received her 9th radiation and 16th chemotherapy yesterday . Because of scheduling and the chemotherapy running later than normal…..Sean and Kylie stayed overnight and will be released at 7 am today after her radiation treatment .
So yesterday Kirsten and I had fun with Cam and Quinn at the Splash Pad in Pittsburgh !!!!
Today Kylie starts her 7 th day of radiation
She is handling this new phase of treatment incredibly well and has only battled some minor fatigue so far. We anticipate the next several weeks will be a rollercoaster. When she is feeling well our goal is to go to the park or another outdoor activity and when she is having a down day we have indoor crafts and activities to help keep her spirits up!
I will be leaving Wednesday or Thursday to join them in Pittsburgh!!!!
Faith is trusting without fully understanding
What does this trial do to my faith? Our family’s faith in God??? Many would ask …is God really good if he allows this? Do I believe He can fully heal Kylie? Why her??? How can this work for the good to those who are called according to His purpose?
I am a realist.. I see things for what they are. Our family is in a trial and living in the unknown … as we all are- none of us know the future.
It comes down to faith… trusting in the God I know and have experienced in the past…He will never leave me…. He can give me PEACE in my trials…. I have trusted Jesus for eternal salvation.If I just unpack those 3 thoughts and what they really mean… I can say it is well with my soul….. Faith without fully understanding this present situation.
This Song below is one of my favorites for this season of my life!!!!
EVEN IF song by Mercy Me
It’s easy to sing
When there’s nothing to bring me down
But what will I say
When I’m held to the flame
Like I am right now
I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone
They say it only takes a little faith
To move a mountain
Well good thing
A little faith is all I have, right now
But God, when You choose
To leave mountains unmovable
Oh give me the strength to be able to sing
It is well with my soul
I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You’d just say the word
But even if You don’t
My hope is You alone
You’ve been faithful, You’ve been good
All of my days
Jesus, I will cling to You
Come what may
‘Cause I know You’re able
I know You can
I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone
I know the sorrow, I know the hurt
Would all go away if You’d just say the word
But even if You don’t
My hope is You alone
It is well with my soul
It is well, it is well with my soul
Every month they will send encouragement to Kylie!!!!
June 8, 2022
6-year-old Kylie was diagnosed this year with Rhabdomyosarcoma, a rare type of cancer that forms in soft tissue — specifically skeletal muscle tissue or sometimes hollow organs such as the bladder or uterus.
Sharing how Kylie’s journey started, her dad, Sean said, “We noticed Kylie limping in early January. After a couple weeks of watching her limp slowly get worse, we started taking her to different places to get her checked out (pediatrician, orthopedic, physical therapy, chiropractor). We eventually circled back to the pediatrician for a more thorough exam where they noticed one of her lungs wasn’t functioning properly. This led us to Children’s in Pittsburgh. After arriving at Children’s, Kylie underwent several procedures that ultimately led to her being diagnosed with stage 4 Rhabdomyosarcoma. Since diagnosis, Kylie has completed 13 weeks of chemotherapy (out of 42) and she started radiation therapy on June 6th (for 7 weeks).”
In exciting news, Kylie’s updated scans just a few weeks ago showed that her tumor and the major spots throughout her body were gone! Her family is so thrilled at the news and the incredible progress Kylie has made since diagnosis. And so are we!
Kylie loves unicorns & rainbows, princesses, and making slime. She also enjoys crafting with her mom and playing video games with her dad. Her favorite colors are purple, pink, and blue, and she wants to be a Youtuber when she grows up!
Sean shared about his amazing daughter, “She is the most positive person that I know. She continues to smile every day. She sees the good in everything and we are so proud of how she is handling herself through treatment. We are thankful for NEGU and the Jessie Rees Foundation because they show that we are not alone in Kylie’s fight against Rhabdomyosarcoma. The support from our local community and beyond has been incredible and we appreciate all the support that we have received.”
Kylie also receives a ton of encouragement and support from her amazing SuperSibs, Quinn, age 4, and Cameron, who is 1. Sean tells us that Quinn really looks up to Kylie and is so great at supporting her when she’s not feeling well. Cameron loves watching videos with his big sis on her iPad when he’s not busy chasing Kylie around the house. We can’t imagine how much laughter, silliness, and love fills that house!
We are so honored to encourage Kylie and Courageous Kids fighting cancer every day through ClubNEGU. This free program is for all Courageous Kids, their SuperSibs and parents. Each ClubNEGU family receives fun doses of hope, joy and love each month!
Today was a great day!. She had her 3rd radiation treatment this morning.
After lunch she asked to go to the park to feed the ducks and play on the playground!
Kylie completed her 1st day of radiation yesterday . She played games with Child Life while she waited to get started. Quinn and Cameron helped Kirsten make a chalk message for Kylie to see as she left in the morning.
After radiation, she had her hemoglobin and platelets checked because they were lower than expected last week. Her platelets are normal and her hemoglobin has continued to trend down. She received a transfusion to help bump her back into the normal range.
Everyone is settling into a new routine while they live closer to Pittsburgh. Kirsten has been taking Quinn and Cameron on adventures to find the best ice cream and playgrounds in the area. Kylie enjoys staying indoors and playing Roblox, but we hope as she continues to gain strength she will ask to venture out more as well.
Kylie completed her 14th chemotherapy treatment yesterday . She has been battling minor nausea, but has been in good spirits otherwise. This was her last treatment before she starts 7 weeks of daily radiation on Monday morning. She will continue receiving chemotherapy every Thursday as well.
Kylie continues to gain strength each week. She enjoys going outside to play tag with Quinn and Cameron and fly her kite when the wind cooperates.
I needed to see Kylie for myself ! So I made a quick visit to see the family and help out !! It was a whirlwind trip… but well worth the effort!! I think the extra set of hands helps even for a short time. Kylie taught me how to play Roblox ( which I am terrible at). I was busy with Cam and Quinn with the pool, crafts, reading stories…
With radiation starting soon, Sean and Kirsten started the process of moving essentials to an Airbnb near Pittsburgh to reduce travel while Kylie is receiving daily treatment.
Kylie resumed chemotherapy on Friday. She battled nausea, but otherwise her spirits are high. As her strength continues to return she seems to be handling chemotherapy better and better each week.
We are thrilled that God has been gracious to us and that the tumor is completely gone!!!!
We are so grateful for the medical team that God has used to bring us to this point ….You are truly His hands and feet to us. Our prayers continue to support you in your tireless work on Kylie’s behalf.
Yet all this being said… Sean used a basketball analogy … which really put things in the correct perspective. We are in the beginning of the game….we are up 20 points….and we are elated!!!! As we well should be… things are looking up …yet we still have 3/4 of the game left. Anything can happen and we can’t let our guard down. We still have radiation therapy for 7 weeks…. We still have 30 more weeks of chemo… and then maintenance therapy…. We’ve got a long road ahead. Only God knows how the game ends … but for today and for this moment we are rejoicing!! One day at a time!!!
God give Kylie and her family the strength to go through the next steps of the unknown as we pray them through this!!! For we know you are in control no matter what the outcome and you are always with us!!!!
I have felt your love and prayer support…It means so much to all of us .
Today we received the results from Kylie’s 12 week pet scan & ct scan.
The tumor in her abdomen is gone, the spots on her lymph node and lung have disappeared, and her bone marrow is not showing signs of cancer!!! The Radiologist said “it’s the absolute best results we could have hoped for”.
Kylie will continue with chemotherapy for at least another 30 weeks. She will also begin radiation treatment in June that will last approximately 7 weeks.
We are still early in Kylie’s treatment and appreciate the continued prayers on her behalf.
Yesterday, Kylie traveled to Pittsburgh for a pet scan and ct scan. Her blood work came back normal. Her weight is trending back in the right direction and the doctors were pleased to see how much energy she has compared to her 1st couple weeks of treatment.
She is scheduled for radiation simulation & chemotherapy later this week. Sean and Kirsten will also meet with the surgeon, radiologist, and Kylie’s oncology doctors to review scans and discuss her treatment plan for the next 8-12 weeks.
Today was a big day for Kylie. Kylie traveled to Pittsburgh for her update scans that will determine her treatment for the next two months.
We packed a lot in a few days!!! I am home now but these are a few memories we made!!!
What a beautiful day to fly a kite !!!
Kylie