There’s a light that shines in every child who comes to Give Kids The World Village. It twinkles in their eyes and sparkles in their smiles.
Since 1995, every visiting wish child has received a gold star to personalize and place on the ceilings of the Castle of Miracles and Star Tower. The star stays there forever, a glittering symbol of a child’s time at the Village and the light that shines within them.
“For the light of who you are, Touches dreamers, near and far. That’s when a wish (That’s when a wish, that’s when a wish) Becomes a star.”
This is where they stay while they are guests of Make A Wish …. It is called Give The Kids the World
Aubrey has been fighting the same cancer as Kylie. They have FaceTimed, played games on Roblox, and has spoken on phone but never met until today. Aubrey lives in Fla and they decided to meet at Disney.
I am so happy they finally have met as I know Kylie was so excited! What a great place to make special memories together!!
Yesterday Kylie went for her weekly appointment in Pittsburgh and her bloodwork looked great. Kylie and Quinn had their nails done and now they are ready for Disney World.
Have a great time!!!!!!!
Kylie’s bloodwork is looking good and she has had her third cycle of maintenance chemo this week!
We are so thankful that she only has to go for the treatment for the day at the hospital and then home.
I know they are all anticipating the trip to Disney… which is coming up soon!!! My prayers are for good health for the whole family so they can really enjoy this time together and build precious memories.
So many of you have seen me over the last few weeks and have told me you are praying for Kylie. Thank you for being there for her and us as prayer warriors!!! It means so much to all of us!!!
Kylie’s blood work came back lower than we hoped yesterday. Her ANC needs to recover before she continues her daily oral chemo. Otherwise, she is doing well. She has been catching up on school work, playing and chatting with her friends online, and she is anxiously awaiting the snow storm!
On Thursday , Kylie had her chemotherapy. Her WBC count was low but they did the therapy anyway. She will have off next week from chemo… hopefully this will give her time for the counts to recover. Mr Mike helped Kylie pull her second loose tooth!!!
It’s official…. “Make A Wish”. … is sending the family to Disney World… Feb 13-18..Kylie’s ongoing chemotherapy treatment has been going well and she has been staying out of the hospital.. which has been such a blessing.And she has been eating enough that they removed the NG tube!!!! Kylie is also getting stronger with physical Therapy sessions!!! We are so thankful for her progress!!!
May God bless you and Keep you and may His Face Shine upon you… and be gracious to you…may the Lord lift his countenance upon you … and give you peace!!!!
God is so good ….sometimes he lets us see things we would not have known but through paths of 2 people sharing a part of their lives with each other.
This is what happened today at work…
My patient asked me how my year had gone and I began sharing about Kylie…I was able to show her this picture
I told her how Kirsten had made her the KlyieStrong shirt…. She quickly said l know that face and I know Kylie Strong…my patient told me to tell Kirsten she has been praying for Kylie!!!
Wow!!! A complete stranger to me has been praying for my granddaughter… I realized that I have no Idea how many people Know of Kylie and are praying and holding her before our Lord. I was very encouraged and saw a little piece of the curtain pulled back for me to see behind the scenes of what God is doing on Kylie’s behalf.
Also Kirsten is doing well. She did not need surgery on her hand and should get the cast off in February!!!
Kylie is asking for some extra prayers for her Momma tonight. Kirsten fell in the parking lot and broke her hand. She just got home from the ER with a temporary splint and she will be seeing a specialist to determine if she needs a pin later this week 🙏
Emmanuel.. God with us…our Rescuer and Deliverer. Happy Birthday…Jesus!!!
MARY DID YOU KNOW
By Mark Lowry
Mary, did you know that your baby boy Would one day walk on water? Mary, did you know that your baby boy Would save our sons and daughters? Did you know that your baby boy Has come to make you new? This child that you delivered, will soon deliver you
Mary, did you know that your baby boy Will give sight to a blind man? Mary, did you know that your baby boy Will calm the storm with his hand?
Did you know that your baby boy Has walked where angels trod? When you kiss your little baby You kiss the face of God
Mary, did you know? Mary, did you know? Mary, did you know? Did you know? Mary, did you know? Mary, did you know? Mary, did you know? Mary, did you know? Mary, did you know? Mary, did you know?
The blind will see, the deaf will hear The dead will live again The lame will leap, the dumb will speak The praises of the Lamb
Mary, did you know that your baby boy Is Lord of all creation? Mary, did you know that your baby boy Would one day rule the nations? Did you know that your baby boy Is heaven’s perfect Lamb? That sleeping child you’re holding is the great, I Am
Kylie’s blood work looks great and they were happy to hear that her appetite continues to return. They also met with the Liver Specialist to go over the biopsy results. They were pleased to report that the damage was not as extensive as they were anticipating and that her liver will heal over the next several months.
Kylie continues to eat on her own and is not relying on her NG tube for nutrition! Her ascites continues to reduce and she is getting much closer to her baseline weight (the medication is working!)
As my children were growing up…. I pondered this verse!!! It was easy to say they were gifts when everything was going great!!!! How were they gifts when everything from my perspective was going wrong?????
I came to the realization …one day doing my Bible reading that… God uses the experience of having and raising children to help us become who we are …..and hopefully those experiences cause us to run to the GIFT GIVER …… and that is the GIFT!!!
God will never leave us alone .. He will help us raise and guide our little precious gifts.
Erin and DeanRyan , Oma, Teagan Sean and Kirsten Cameron, Quinn, and KylieKaris, Korrey, and Noah
Kylie was allowed to start to eat again after her procedures and hopefully she will start relying less on her feeding tube .
She resumed her daily chemotherapy yesterday and her blood work remains stable. The results that have come back from the procedures so far are encouraging and we hope the liver biopsy will provide some clarity sometime next week.
A few hours later .. Kylie was allowed to return home!!! So happy for her!!!!
Kylie is out of her procedures and in recovery. The GI scope and liver biopsy went as planned. The GI images look great and she will start her NG feeds again tonight. The biopsy results won’t be available until sometime next week (we hope it will provide some answers to the lingering side effects). Kylie is tired and will likely sleep through the evening until morning.
Thank you to everyone that has reached out and sent Kylie love and prayers. We are hopeful that she will continue to improve and make it home for Christmas!
The original plan was to have a scope yesterday, but after talking with GI, Liver and Oncology they have decided to push the scope to today so they can also complete some additional procedures. They believe the additional procedures will provide clarity to some of the lingering side effects Kylie has been dealing with.
Praying that wisdom is given to doctors… to provide answers for the lingering side effects!!!!
Kylie had physical therapy this week and she is moving better!!!They moved Kylie’s chemotherapy ahead a day … as inclement weather was moving in … so she went to Pittsburgh today. After getting the bloodwork and talking to the team about some GI issues that occurred over the past week, they decided to admit Kylie. Tomorrow they will do a scope to see what is causing the GI issues. She is now in the oncology floor. The chemo will not be done until the scope is completed and then recommendations will be made from GI to the oncology team.Kylie has been busy exploring the halls and finding the various elves. We hope and pray this is a short stay for Kylie.
Rob and I wanted to see each of our children and their families over the next few weekends to celebrate Christmas. So our first visit was with Kirsten, Sean, Kylie, Quinn, and Cameron.
A song that popped into my head while we were driving to their home was “ Eye of the Storm” by Ryan Stevenson…..little did I know that this was God’s way of preparing and comforting ….for the night to come.
We had a great time opening gifts , reading stories, doing crafts,and enjoying each other’s company
Then Kylie’s side effects from her chemo treatment started to worsen in the evening. Kylie was rushed to Pittsburgh for evaluation. After a long night of tests… she returned home to be monitored. We were so relieved to see them back home by the morning and to see them home again as a family…… before we left to go home!!!
On the way home I remembered the Song…and was amazed that through this song….He had prepared me before I knew what was to come!!!!! We have hopes and dreams which can all be shattered in a moment….In the middle of a crisis…God is in control , He will guard us, be our anchor, and surround us with His love
Rob and I will be going this weekend to Celebrate Christmas and Cam’s birthday!! It has been a while since we have seen the family and we are so excited to spend time with them.
After a 2nd quiet day of monitoring the team determined she was ready to go home! She had her scheduled broviac dressing change this morning (Stacy got a broviac today!) and a blood transfusion to keep her hemoglobin number strong. They are processing the paperwork and they will be home for a late dinner tonight!
Thank you for the love and prayers. We appreciate all the support 💕
Kylie’s temperature and heart rate have returned to baseline 🙏
She was able to get some rest through the night and feels much better today. She will continue to be monitored throughout the day and the team is hopeful she can be home for the weekend!
Kylie started physical therapy .She has become much more mobile the past month and the team recommended PT to help strengthen her legs.m
She started to feel the effects of Mondays chemotherapy. She has been sleeping more and doesn’t have as much energy as the last couple weeks. She is tolerating her feeds well and has experienced very minimal nausea.
Kylie spiked a fever yesterday afternoon and Kirsten took her directly to Pittsburgh.
They started antibiotics and did blood work. Her blood work looks good and her temp and heart rate are trending back towards normal. She has been admitted for monitoring and being transferred to the 9th floor.
Kylie’s appointment went really well. Her blood work looked good, her liver function is improving, she ate lots of snacks, she stopped for a Happy Meal 🍟, and everyone was really happy to see how much energy she has!
Thank you for the continued love and prayers as Kylie transitions to her new chemotherapy regimen 🙏
Dr DaleyFound a new treeMr Mike playing Roblox with Kylie
Pivoting – adjusting your direction and continuing your momentum toward your goal or mission.
Over the past 6 months Kylie has struggled with the side effects of her treatment. This led to countless blood and platelet transfusions, complication with her colon and liver, ascites, GI issues, and several ICU admissions.
The VAC chemotherapy (primarily the A – dactinomycin) was causing havoc on her body as she struggled to recover from the 7 weeks of radiation she received in June/July. We have watched Kylie progress through treatment with positivity and grace, but the side effects have grown more serious with each admission.
Since week 12 (May 23rd) all of Kylie’s scans have shown NED – No Evidence of Disease. After thorough consideration and several discussions we have decided to end Kylie’s frontline treatment and move into the maintenance phase of her chemotherapy. Maintenance chemotherapy is scheduled for one year and the 1st dose will be administered later today. She will receive 3 vinorelbine infusions each month and also a daily cyclophosphamide pill.
Kylie and Dad will travel to Pittsburgh later today to receive the 1st dose. Thank you for the continued love and prayers 💕
We are so blessed and continue to pray to the One who Heals , Hears, Sees, Comforts , and Knows!!!
I know there’s gonna be some brighter days I swear that love will find you in your pain I feel it in me like the beating of life in my veins I know there’s gonna be some brighter days I know there’s gonna be some brighter days
Oh, ashes fall from burning dreams Oh, never lived through times like these Oh, if you’re trying hard to breathe in the dark In the dark
I know there’s gonna be some brighter days (yes, I do) I swear that love will find you in your pain (oh) I feel it in me like the beating of life in my veins I know there’s gonna be some brighter days I know there’s gonna be some brighter days
Oh, if your screams don’t make a sound (if your screams don’t make a sound) Oh, if your walls are crashing down (crashing down, crashing down) Oh, if your heart just cries too loud all the time All the time, whoa
I know there’s gonna be some brighter days (some brighter days) I swear that love will find you in your pain (love will find you) I feel it in me like the beating of life in my veins I know there’s gonna be some brighter days (there’s gonna) I know there’s gonna be some brighter days
Kylie asked if they could decorate the Christmas tree with her Beads of Courage instead of ornaments this year. Each bead represents a unique piece of her journey since diagnosis.
289 days battling cancer 7 weeks of radiation 30 weeks of chemotherapy 100+ days inpatient 620 Beads of Courage
On Kylie’s way home from the hospital she FaceTimed me!!!! I was so happy to hear from her!!! She looks great and had a lot of energy!! We talked for a while about Santa and Christmas… then mom chimed in about why they talk so much about Santa and not about Jesus’ Birthday . So I told Kylie I would read to her the real Christmas story of Jesus… we just finished the story when we lost reception!!!
Kylie’s appointment went really well. Her blood work all looked good and she is scheduled to resume chemotherapy on Monday. Her broviac dressing change, typically a source of anxiety, went smoothly with no tears! 💪
She enjoyed seeing UPMC Children’s Hospital of Pittsburgh decorated for Christmas and searched for as many displays as she could find! 🎄 ⛄️ ❄️
And another Kylie strong rock hidden at UPMC Children’s Hospital of Pittsburgh
Kylie and Mom are on their way to Pittsburgh. They will get blood work and change her broviac dressing. She will also likely be taken off one of the medications.🤞
She had a great week at home! She is eating more and more each day, her tube feeds continue to go really well, and she is getting lots of rest!
She has been eating really well the past couple days. Our goal is to slowly get her to gain weight. The combination of tube feeds and her eating should make that happen over time. 🍕 🍰 💪
As we were leaving a surprise gift arrived! When we got home she couldn’t wait to try out the new projector in her room 💕
Kylie was excited to give Quinn her teddy bear back! They made s’mores and played roblox together for an hour before bed 🥰
Kylie is extremely excited to be home before Thanksgiving. Thank you for all the love and support you have sent her throughout this inpatient stay.
Kylie is officially off of TPN and doing really well. Her appetite is the best we have seen it since treatment started. She ate pizza and lots of snacks yesterday. Her tube feeds are also going as well as we could have hoped.
Kylie had an early morning ultrasound today to check on her liver function. Her liver numbers look good and the ultrasound confirmed that her liver is stable🙏
Kylie is on her way home!!!
I in the other hand ….ironically am in the hospital !!!! I developed appendicitis last night and had surgery today for removal of the appendix. I am feeling much better after a long painful night!!!
Kylie continues to meet the goals they have in place. They are increasing her feeds to full strength today! She is also walking without assistance and has been crafting every chance she gets!
Kylie is scheduled for a ultrasound to check on her liver and the lingering fluid on her stomach. The doctors are really pleased with how well she is doing this week and how much more active she becomes everyday!
Kylie’s new hobby is jewelry making. She met 2 patients earlier this week and decided to gift their moms with a piece of her custom jewelry!!! Yesterday the love came back 10X!! We love the heart she has and the joy she wants to spread to others!!!
Give, and it will be given to you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you.” Luke 6:38
Kylie resumed internal feeds today to test for tolerance and has done great so far! She convinced the doctors to let her also drink some tea and eat popsicles! 😊
She also worked with PT to help with the lingering leg pain from earlier in the week. She continue to gain strength each day and we were thrilled she decided to push herself and start walking today!!
We are hopeful that if she continues to show progress she will be home for Thanksgiving! 🦃
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.
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.
This is childhood cancer 😞 Kylie had a really good day yesterday. She had visitors and she was playing with the nurses and doctors all day….Things flipped quickly around 8 pm last night. She started to experience foot and knee pain. This gradually worsened throughout the night and she was unable to sleep for more than 5-10 minutes at a time. Around midnight she also became very sensitive to touch. She has been through so many tough procedures and treatments that she has smiled through. There were no smiles through the night. We are working with the oncology team and supportive care to determine which medications are causing the pain. She could use some additional thoughts and prayers right now 😞.
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 .
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. 🙏
Kylie has been transferred back to the main floor! The CT scan found inflammation, neutropenic typhlitis, which thankfully is treated with antibiotics and rest. She had a really good night and woke up happy and ready to play Roblox! The team is making adjustments and determining exactly what our next step should be with treatment.
There have been several conversations and adjustments made as the team continues to assess Kylie and determine the best path forward. Earlier today her NG tube cracked and they had to replace it. The GI scope has been postponed and she is currently being prepped for a CT scan. They will use the CT scan to determine if she can safely receive the scope tomorrow or if we will need to adjust and look at other options. Overall, she is feeling much improved today. She is playing with the nurses and doctors again, which is great to see. Her vitals have returned to baseline and she looks much more comfortable than she did over the weekend. Thank you for all the thoughts and prayers. We hope that today will provide clarity as we continue to move forward with her treatments 🙏
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!!!
Being 51/2 hours away from loved ones is very hard… especially when there is illness involved. I knew Kylie was struggling with bleeding issues, nausea, and exhaustion. ……………………………………………………So we FaceTimed and I read to her. ……………….She chose “the Jesus Storybook Bible” and “Thoughts to Make Your Heart Sing”. Kirsten took this picture of me reading to her ……..she just closed her eyes and listened.
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!!!!
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
Kylie and Quinn having great time together Kylie spiked a fever last night.Sean and Kirsten made the decision to go directly to Pittsburgh. They immediately started antibiotics and gave her fluids. They took blood work and her ANC dropped to 10 🫤. She has been admitted for monitoring over the next couple days.
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.
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 