Kylie is having a quiet weekend with lots of napping, Roblox and YouTube. 💤 🎮 🎥
Her blood work and vitals look great. Her knee and foot pain has significantly improved. Tomorrow they will begin her tube feeds to test for tolerance. This is the last major obstacle before she can be discharged!
Kylie would like to thank everyone for the cards, messages, and gifts. She loved reading through all the e-cards (she received 147!) and has been snuggling with all of her new stuffed animal friends.
After a long week of test, scans, and procedures Kylie has had the opportunity to rest and recharge. the plans for the week were unpredictable at times and Kylie persevered through several difficult situations. She has been sleeping a lot since the scope was completed and she is allowing her body to heal.
All of her blood work and vitals have returned to her baseline or slightly better. There is nothing scheduled except her normal daily medication until Monday when they start her feeds again to test for tolerance.
Quiet weekends are good weekends.
Update: Today Kylie was hit hard with pain that she has never experienced before. She struggled through the night and it has been one of the few times that we could see she was desperate for relief. While enduring the pain her spirit continued to shine through as she thanked the nurses and doctors countless time as they attempted to relieve her symptoms. We are so proud of her strength and the grace she shows everyday 💕.
After several discussions this morning the team was able to adjust her medication that allowed Kylie to finally get some rest. She napped from noon to 2 and has been napping since returning from her GI scope at 4.
The results of the GI scope came back much better than expected. the bleeding and inflammation from 4 weeks ago have healed and they found no other concerning areas.
Thank you for the outpouring of love and prayers. Kylie is still experiencing some bone pain, but we are happy that she is able to get some rest while recovering from last night and the GI scope.
Prayer from Jenny which I am passing on to you
If you are seeing this PLEASE STOP for a few moments . PLEASE READ THIS. PLEASE PRAY FOR KYLIE.
Dear Heavenly Father, We come to You on behalf of Kylie. We ask and invite you and your archangels and angels to minister healing and comfort and peace to Kylie. We ask that you will deliver her from what is afflicting her, speed healing to every single cell and hurt her tiny body is enduring, Bless her with peace and calm and help her to relax and rest as she in enveloped in your love and care and light. Give the doctors wisdom to find the source of this pain and the strength, fortitude and ability to remove it. Give them the wisdom and resources to implement in her care plan that leads the pathway to complete healing without harm to her . Bless her parents and siblings with comfort and peace as they stand by her side as she fights this war. We ask that you unleash your healing powers and remove this pain without harm to her precious little body. We ask that you deliver her from these afflictions and restore her to perfect health and give her the strength to finish this treatment and live a healthy vibrant beautiful life . We thank you for your presence in her life and we thank you for your healing power. In Jesus Name. Amen. And so it is .
Thank you 🙏
Kylie has continued to show improvement since her CT scan. The antibiotics seem to be working and Kylie had a much more comfortable day. The team continues to adjust her TPN nutrition while her stomach heals. Her vitals have returned to her baseline and the fluid that she was retaining continues to reduce.
Topaz Fairy Project dropped off a package for Kylie. She really enjoyed the message that Topaz wrote to her and screamed “She wants my autograph!!!” 😀
GI stopped in and determined that they can move forward today with the GI scope. Thoughts and prayers are greatly appreciated. The results of the scope will help shape her treatment over the next week or two. 🙏
The scope was postponed today and Kylie was transferred to ICU.
Her temp was 104 her heart rate was 170s and her blood pressure was low.
Kylie received fluids, a blood transfusion, and had an ultrasound since arriving in the PICU. Her vitals have all improved drastically and although still uncomfortable she is feeling better.
She is tentatively scheduled for her scope tomorrow morning🤞. We are hopeful that she will be able to get some rest tonight and be deemed ready to proceed.
Keep her in your prayers …….she is a great warrior!!!
Quinn called on another device and a lot of interruptions came ….so we stopped reading. I heard Kylie ask Quinn to pray for her … that she would feel better and that her stomach wouldn’t hurt. …So I prayed well into the night for her for these very things.
Kylie is scheduled to have an extensive GI scope today. We are hoping that the scope brings clarity and provides clear information for the team to create a plan to correct the bleeding moving forward.
I love you Kylie and you will be in my thoughts and prayers as always!!!!
Pray for our little Kylie who is in the hospital
Update:
Kylie has been moved to the 9th floor for monitoring over the next couple days. She has been battling a fever the past 24 hours. She is currently on an antibiotic and Tylenol while they wait for cultures over the next 24-48 hours.
Her GI issues also came back pretty aggressively . She received a blood transfusion and is scheduled for a GI scope on Monday to determine if the cause is the original or a new location.
Kylie is feeling better after a full night of sleep. They are closely monitoring her hemoglobin and platelets. She will get a stomach scope to determine what the source of bleeding is tomorrow.
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 933
e-cards.upmc.com
God is in this story
God is in the details
Even in the broken parts
He holds her heart, He never fails
When She’s at her weakest
She and we will trust in Jesus
Always in the highs and lows
The One who goes before her
God is in this story
It was so encouraging to hear that some neighborhood kids dropped off some candy for Kylie… they left before anyone could thank them!!!!
This weekend was quite eventful for Kylie… never a dull moment!!!
There was an unexpected trip to the ER because Kylie’s NG tube came out in the night. That Didn’t stop her from taking advantage of Halloween and dressing up as Rapunzel!
Then afterwards Kylie and Cam and Quinn went to trunk or treat! They also had s’mores in the backyard
Kylie’s GI issue returned through the night 😞.So she went to Pittsburgh for evaluation and she needed a blood transfusion… of courses she dressed up again!!! The blood work showed no other concerns and she was sent home. Yeahhhh!
Kylie is thrilled to be home. She has been busy playing Roblox and watching YouTube. Today she connected with Team Aubrey Hope ❤️💛 , who is also fighting the same cancer. They are currently chatting about all their favorite things while playing Roblox together.
Kylie is home!
Chemo went really well Tuesday. Eddie stopped by for his weekly visit, nurse Abbey took her on an ice cream date and she was feeling well enough to have a dance party right before bed 💃.
Kylie continues to improve each day. She has been busy making crafts, playing roblox, and visiting the healing garden. Her blood work looks great and she will resume chemotherapy today.
The team is pleased with her progress and have discussed discharging as soon as tomorrow. We are hopeful that chemotherapy will go smoothly and she can come home sometime tomorrow.
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