Today we were able to get Kylie to do an activity of making a gingerbread house. She seems to be handling the second round of chemo much better… although she is not able to go to school… she has a teacher that comes once or twice a week to help keep up with her schoolwork. Tomorrow she is going to try to go to school for 1 hour for an activity with her classmates. This should really boost her morale.
So far Kylie has done remarkably well with her second cycle of chemotherapy. Her nausea has been controlled and she has been eating a little. Tomorrow she gets her shot of neulasta to increase her WBC. Thank to all who have been praying for Kylie… this cycle was so much easier for her and the family.
On Valentine’s Day ….Kylie went to her school for a short visit. When she is absent from school there is a “ Monkey in my Chair”.. literally!!!! They have a monkey that sits in her seat and helps the kids remember that Kylie is missing… so they can keep her in their thoughts and prayers!!
As you can see … Kylie’s smile has returned.. she is feeling better …and eating …..and sleeping through the night .
I will be taking the train on Wednesday , from Lancaster to Altoona , and then Mary Beth ( Sean’s mom) will drive me the 45 minutes to Kirsten and Sean ‘s home to be extra hands with the second cycle of chemotherapy that starts on Thursday.
We are praying for her as she goes into this next cycle as the first one was really hard on her.
Kylie noticed her hair was starting to fall out over the past couple days. Today, she made the tough decision to shave her head.
I think she rocks this look!!!
After getting antibiotics, fluids, and Tylenol. They are happy with her blood work and are discharging Ky. They are walking out now!!!!
Kylie spiked a fever today and she is being monitored in the hospital right now.
I left today to catch up on some things at home and help my mom and dad with some things.
Kylie’s bloodwork was done in the morning and I left after they returned.
Kirsten reported that they are still waiting for a call from the doctor with the bloodwork results. She also said Kylie is trying to eat more !!!!! She has 10 more days until the next round of chemo…Praying she regains more strength and wisdom for the doctors as they proceed with next steps of treatment.
It’s never easy to say goodbye .
Kylie was in bed most of today… yesterday she seemed to have more energy… she has spurts of energy and then she sleeps a lot… originally they were told Kylie would be able to go to school , while in treatment … but right now that is impossible. so she is going to try homebound.
Tomorrow Kylie will have CBC bloodwork.. which will check red and white blood cells, platelets, hemoglobin …if it is too low then she will need a blood transfusion.
So we pray that she will not need the transfusion.
Lord willing ….the plan for me is ….to go home tomorrow and catch up on things at home and come back for second round of chemotherapy possibly on February 20th. That is the plan … but things may change.
Kylie is finally starting to feel better after several long days of nausea and fatigue. She was able to sleep through the night for the first time since finishing the first cycle of treatment. She is still battling nausea but trending in the right direction. Now we are working on eating more to hopefully gain some strength back before cycle two starts.
Kylie had an injection of neulasta today which can help the body make white blood cells after receiving cancer medications. As the neulasta works…. The body reacts and can cause a lot of pain… which she is experiencing today.
Kylie is struggling today and she is having a lot of tummy aches and nausea. She is struggling to feel like eating. Kirsten and Kylie made a quick visit to see her friends at school during their recess time today..to get her mind off her situation . She came home very tired… but glad to see her friends. Cam and I went to the library!!!! Keep her in your prayers as this is the first cycle ….of 4 chemo treatments before her scans.. ..to check the tumor.
Casting the whole of your care [all your anxieties, all your worries, all your concerns, once and for all] on Him, for He cares for you affectionately and cares about you watchfully.
We had a situation yesterday , where the hospital pharmacy had to go through a mail order facility to get Kylie’s chemo meds sent to the house. The mail order pharmacy was told to overnight the meds last Monday. Nothing was done and hospital contacted them again on Friday … and told them to overnight the meds. We needed them yesterday and they were overnighting them for this coming Monday. Sean and Kirsten were on the phone all morning yesterday trying to sort out why the meds were not here… and why Fed Ex was delivering on Monday instead of yesterday. I began praying that God would work this out… as it seemed impossible to get them before Monday…..as this was a Saturday ( nobody works on Saturdays). Sean went through 5 supervisors before he got to the head supervisor. This supervisor had to be willing to change the Fed Ex order… in order for Fed Ex to release it. Then there was a deadline of 2 pm when Fed Ex warehouse closed. Sean had a 40 minute drive to get to the Fed Ex warehouse . He left about 1:05 and hoped that they found the package by the time he arrived. I knew this was dire and only divine intervention was going to see this completely through. When Sean arrived…The supervisor said she looked up Kylie’s Facebook page to make sure this was all legitimate .. I really believe that she wasn’t even sure why she helped Sean…and how she found the package in a timely manner. I had a few of you praying as well in the last minutes of this ordeal. Everyone knows bureaucracy and especially on a Saturday… what a praise to Sean’s tenacity and God’s provision!!!
Kylie had her port placed and first dose of chemotherapy. She is sore and starting to feel the effects of chemotherapy. Kylie is home now and I am with the family to help support them in whatever way I can .
This heart was meant to be found by me today. I was walking to get my mail and I saw this quilted heart in the garden !!! Since it needed a home I picked it up and then went to the website .
The IFAQH community of volunteers anonymously create and place small quilted hearts around the globe to brighten the day of a stranger.
This was a special hug from God to me through the hands of these special people!!
I wanted to share an update on Kylie’s health. Her PET/CT scans showed only minimal spread of disease in her right lung, which is a positive sign. They will be traveling to Pittsburgh on Friday for port placement, and she’ll begin VIT chemotherapy after the procedure.
I will be heading out on Friday to help out where I am needed in case there are any issues.
We also wanted to thank the students at Harmony Elementary for the cards and to Kylie’s teachers for the thoughtful gift.
Thank you all for your continued love and prayers.
Yesterday Kylie went to Pittsburgh for PET/CT scans to assess the extent of the disease before starting chemotherapy treatment next week. They are staying hopeful and taking things one day at a time, knowing they have such an incredible support system behind them. They are so thankful for the encouragement that they have already received.
🙏
“Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.”
After almost 14 months of being off treatment, our world has once again been turned upside down when we learned that Kylie’s cancer has relapsed. It’s been an emotional time, but we are determined to stay strong for her as we face this next chapter in her fight. We are currently working with her oncology team to create a plan and determine the best treatment protocol moving forward.
We are grateful for the support we’ve received from family, friends, and everyone who has kept us in their thoughts and prayers. Kylie is a warrior, and we’re ready to fight alongside her every step of the way. Thank you for continuing to keep her in your thoughts and prayers. 💛
Tomorrow Kylie goes for scans. This is a very stressful time for the family as it affects each one in the family in their own way. If you could take a moment and pray for them as they again face the unknown as to whether her cancer remains no evidence of disease or it has returned.
Even though it has been a year since Kylie has completed chemotherapy… we never really know what the scans will show…
They plan to visit us for Thanksgiving!!!!
At the age of 6 , Kylie was diagnosed with stage 4 Alveolar Rhabdomyosarcoma and was given a 10% chance to live. About 56 children a year get this form of cancer.
I have been contemplating this thought a lot recently………Each of our lives are on a unique journey ….. and we are all going into the unknown in that journey…..
On this journey, I can … succumb to fear….. or trust God …..that through these events that somehow, He is refining my faith…., giving me hope as I trust Him…….and ….as my mind is stayed on Him……..I have perfect Peace.. ….no matter what the outcome. When I can’t see the way, I know I am not alone.. God is always with me. I learn that He is Faithful.
The first thing that happened after Kylie was diagnosed….God gave me an overwhelming Peace … that is beyond understanding . I did not now what that meant… would Kylie be healed or would she be with God at a tender age. ???? So …I committed to reading her the Bible Story Book.. in person and over the phone.. so she could know and trust the God who loved her and could save her soul .. as He did mine at the age of 10. The most important thing of all ……..is to know our eternal destiny.. and then we can face anything. Kylie learned of Jesus’ Love and she believed that Jesus is her Rescuer and that he died , was buried and rose the Third day according to the scriptures. Whosoever believes in Him will live forever!!!
Ellie Holcomb wrote the song … Red Sea Road
I heard the song and fell in love with it! She writes on a blog…..
.. “Hope rises from an empty grave. Hope helps us stare into the face of every pain. When the Israelites had an army behind them and a sea in front- it was an impossible situation. God opened up the the Red sea.. making a way where there was no way. The Israelites were probably thinking…. If I stay I am going to die… but if I trust God and walk through the middle of the parted Sea… it may close in on me and kill me as well!!! This song reminds our souls God is with us… He is Faithful….He goes before us….. He goes behind us…He fights for us….we can trust that He will bring us through the most unbearable moments… because… He is in the business of making a way where there is no way. God shows up in the middle of our most desperate and broken places.” Ellie continues to say. “ My prayer for you is to see God make a way….I don’t know when your suffering will end… but God is in the middle of it and there will be healing and restoration one day. Whether it is on this side of heaven or the next….Hold onto Hope. … Hope Himself walked out of the grave!!!”
All I can say to that is Amen!!! If our eternal destiny is secure… we can face anything!!!
If you get a chance ……look up on you tube and listen to Ellie Holcomb sing .. Red Sea Road!!!!
It was a great time!!! Kylie’s got to go on all the rides that she could not go on when she went on the. … Make A Wish … trip … as she was undergoing chemotherapy and had a port in her chest. This time …..her dad made sure that she had the best experience…. We did more in a 6 hour day than anyone could do being at the park all day.!!!! I not exaggerating either!!!
Kylie was still using her wheelchair .. but she could walk short distances to get on the ride herself. At night she would wear her removable braces.
Here are some of the things we did here at Give the Kids the World….
Unfortunately Rob was not able to join us as he tore his Achilles Tendon… I left him in good hands at Tel Hai ( where we now live)… he survived just fine!!!!
God is Good. Even in the tough times …God is Good….How can I believe in something that I haven’t seen? I can tell you that I have seen the faithfulness and goodness of God in my life. Truth of His word has played out in my life to believe in the Lovingkindness of God in all situations of life … has been the source of my Joy ….. and has been the strength of my faith
Kylie has recently had new scans and they have come back clear with no evidence of disease!!! We are so thankful!!!!
Clear scans! Kylie remains NED!! We are so thankful!! Let’s go to Disney World!!!
Our hopes and prayers are for the scans that will be done this Thursday.. to show NED ( no evidence of disease)
At Kylie’s liver checkup 3 weeks ago we were blindsided with the news that the team found lesions that needed to be further investigated.
Since then, Kylie has traveled to Pitt several times for additional blood work, an MRI, and an ultrasound. After several stressful weeks we are happy to say that the lesions are healing and are not considered reoccurrence of cancer.
We are so excited and relieved… as this was a big milestone to pass!!!!!
Kylie has been doing well since she finished her chemo treatment.
She celebrated her 8th Birthday in January
Rob and I were able to visit for Christmas! We had a fun visit. We are in the middle of getting ready to move and will be an hour closer !!!
On Thursday Kylie had her port removed! She recovered well . She helped Cameron celebrate his 3rd birthday ( which was the same day as the port removal)
Clear Scans!!! Kylie remains NED. She is scheduled to have her port removed next week and will be monitored every 3 month with scans!
I am so thankful that today I was able to see Kylie ring the Bell at Children’s Hospital of Pittsburgh today.
She had her end of treatment scans! Afterwards she went to clinic for a short appointment and Kylie got to ring the bell!!🔔
A Blessing for Kylie!!!!
The Lord bless you and keep you
Make His face shine upon you and be gracious to you
The Lord turn His face toward you
And give you peace
May His presence go before you
And behind you, and beside you
All around you, and within you
He is with you, he is with you
In the morning, in the evening
In your coming, and your going
In your weeping, and rejoicing
He is for you, he is for you
(Amen, amen)
He is for you
Happy Thanksgiving everyone! 🦃
We are extra thankful this year because today Kylie took her last dose of maintenance chemotherapy!!!
Thankful for all our prayer warriors and encouragers who have carried us through this part of our journey.
Thank you Sugar and Butter, LLC for making Kylie a custom cake to celebrate her final dose of chemo! The cake resembles her Beads of Courage. The beads represent her story and everything she overcame throughout her treatment!!!
Despite missing close to 18 months she has thrived in class since returning this fall (might need to focus on spelling just a tad more 📚)
Kylie started complaining of tooth pain late last week. After talking with her oncologist and her dentist we have decided to postpone the start of cycle 11 of chemotherapy. Kylie will take a special antibiotic to help prevent infection before she gets some dental work done early next week, then she will resume chemotherapy next Thursday.
She could use some extra love and prayers this week that her dental work will go smoothly and she can continue with chemotherapy next week 🙏 🫶
Blood work looks great! We got the green light to move forward with her dental procedure tomorrow.
Kylie and Cam picked the final strawberries from their garden this morning 🍓
Kylie came home from school early today. She was overwhelmed during class and said she wasn’t feeling well. Likely a mixture of effects from last weeks chemo and anxiety as she continues to adjust to school. She is feeling better now and is excited to get back to class tomorrow!
She got a couple surprises today as well. Our UPS driver dropped off a squishmallow and gummy worms and Cancer Kickers Soccer Club sent Kylie’s siblings matching shirts. Thank you!!! They were the perfect surprises for a down day!
Clear Scans!!! Kylie remains NED! (No evidence of disease) We are thrilled that treatment continues to work for Kylie. She still has several months of Chemotherapy ahead of her. Thank you for all the love and prayers 🙏🎗️💕
She also had a great 1st day of school. She is so happy to be back with all of her friends.
Mimi (Sean’s mom) joined Kylie for the trip to Pittsburgh. Kylie’s scans went smoothly and we should have results sometime tomorrow. Thank you for all your prayers!!!
Praying for Kylie today and she has a busy week ahead. She has her 3 month scans today. Her 1st day back to in person school is Tuesday!! Then, she starts cycle 10 of maintenance chemotherapy on Thursday .
With Kylie not feeling well and the trip to the ER we completely forgot to post about the Great Cycle Challenge Tribute Day ! Kylie was selected as an ambassador for their month long cycling challenge that starts on September 1st. She was displayed on a billboard in Times Square along with all the amazing riders that will be participating in the challenge next month!
Kylie was discharged late last night. The ER staff was amazing and took great care of her. She was thrilled to get to come home and sleep in her own bed. Thank you to everyone prayed her through this time of crisis!!!!!
Kylie unfortunately wasn’t able to avoid an ER visit. She has had a tough couple days battling pink eye and an ear infection. They are working on getting her the right medications so she can start to feel better. We appreciate all the continued love and prayers.
This past week we had all the grandchildren at one time or another throughout the week . Ryan stopped by with mom, dad and Teagan…to see us before heading off to college at Cedarville University in Ohio!!
Teagan stayed with us… (while mom and Dad took Ryan to college )to see her cousins .. Kylie, Cam , and Quinn
Then Noah came to visit..!!!
Kylie eyes looked off Saturday afternoon and it was determined she had pink eye. Sunday morning the family left to go home and she started feeling sluggish and had an elevated temp. She was being monitored closely and hoped that rest and fluids would help it pass before it reached the threshold for an ER visit
Kylie was feeling much better this morning.They spoke with the team and they were comfortable with keeping her home unless the fever worsened because the temp was likely a side effect of the eye drops. We encouraged her to drink extra water throughout the night and she has been mostly sleeping since yesterday afternoon. Her temp has slowly come down and is back to normal. Your prayers for Kylie and the family are much appreciated…as Kylie continues these last few months of chemo!!
Many things have happened in my life recently.. my mom and dad had to move to Assisted Living. So I spent all last week making that happen for them. My brother and I will be spending the month of August cleaning out their cottage of 20 years.
At the end of last week Rob and I got together with Kylie and the family at Knoebels Amusement Park and had a blast
Today Kylie completed cycle 9 of her maintenance chemo and her bloodwork looked great!!!!
Sean and Kirsten’s family partners. Took care of the little details and gave Kylie, Quinn and Cameron all their love and attention. Couldn’t have asked for a better pairing. They were absolutely amazing! 💕
All great things must come to an end. The family had an amazing week with Lighthouse Family Retreat. Had dinner on the beach with the other 12 retreat families and all of the amazing partner families and volunteers. Lots of friendships formed and memories made. It’s not goodbye, it’s see you later 💕🏖️🎗️
Flash flood warnings and power outages won’t damper the fun on the last day of the retreat! ⛈️⚡️
The kids are really enjoying their time running around with their new friends and swimming as much as they can! One last dinner with the Lighthouse Family Retreat families and volunteers before the family travels home tomorrow morning 💕
Lighthouse Family Retreat is a faith-based non-profit that exists to strengthen every family living through childhood cancer. They host family retreats and develop helpful resources so that families and their support systems can find hope in God and help in their fight. Thank you for this wonderful opportunity for the family!!!!
Kylie had her 8 th cycle of maintenance chemo a few days ago … it hit her hard later on in the day but she recovered nicely
Now the family is on a trip to Miramar Beach , Fla where Lighthouse Family Retreat is hosting them for a week.
They stopped in Tennessee and had a great 2 days there before the trip to Fla.
What a blessing to finally have Kylie and her family here at our home for the first time in about 2 years
It rained most of the time but we did get out between the storms. Great grandma Quanstrom came from Florida also!
Kylie