Sean is in charge of helping with the Senior class trip in the school where he is a teacher. The senior class trip to Disneyworld is this week. I am helping Kirsten with the children while he is gone.
Sean was able to get Anna and Elsa to video chat with Kylie! She was thrilled!!!
I can’t remind myself enough of this…..I have to keep my eyes on the Lord and not the circumstance.
Water many times in the Bible represents Chaos!!
In Creation… the spirit of God hovered over the waters (chaos) and He was there over the chaos and created living spaces and He filled those spaces .
In the Flood and Noah…water (chaos) covered the earth and destroyed it, yet God brought Noah and his family through the flood (chaos).
In Exodus…Egyptians were pursuing the freed Israelites… the Red Sea( chaos) was in front of them. God split the sea (chaos) and watched over the people all night as they walked through the chaos ..and brought them to the other side.
Jesus was in a boat with his disciples on the Sea of Galilee. A mini hurricane came upon them. The boat nearly swamped. The disciples called out to Jesus. Water (Chaos ) was all about them and about to swallow them. Jesus said Peace… be Still. With the Spoken word….. the chaos went to calm
In Revelation… in the new heaven and new earth there was no more Sea (chaos).
Our storm happens to be rhabdomyosarcoma. This storm is raging all around us. God makes a way like only He can…since he is with us.. we will will not fear…..the peace of His presence within us does not allow the storm to overwhelm us.
What do you do when you only have an hour chemotherapy treatment?!?!
Go to the zoo!! 🦒 🦓
Kylie completed her 12th chemotherapy this morning. Her blood work came back normal and we were able to avoid getting transfusions this week!
Thank you to CHP for the complementary zoo tickets. Kylie really enjoyed getting out in the warm weather and seeing all the animals.
Kylie gets a short break away from chemotherapy. She doesn’t have to travel back to Pittsburgh until the 23rd when she will have several tests/scans completed to prepare for radiation.
Thank you all for praying …the retrieval of stem cells was successful and they got more than enough.!!
Kylie’s next Chemo is scheduled for Monday , April 9.
I will be going to help out the family … May 14 to the 18.
When Kylie arrived in Pittsburgh, she had blood work taken, a platelets transfusion, and she even found some time to make slime 😊. Her blood work came back as hoped and showed enough stem cells to move forward with the stem cell retrieval tomorrow morning. Kylie had a catheter placed today and she will also have a new ng tube placed after her surgery is finished.
Kylie had her chemo done at 6 pm and will have a blood transfusion at 7 pm and the stem cell retrieval is scheduled for 8:30 to 11:30 am tomorrow. Thank you for your prayers… she seems to be doing well.
Today Kylie goes to Pittsburgh to have a second port placed in her chest to do a stem cell retrieval. They want to do this before radiation starts… so this will be an overnight stay. Sean’s mom and dad will watch Quinn and Cameron … so that Kirsten and Sean will be with Kylie.
We pray they will retrieve enough stem cells the first time so they will not have to do a second retrieval.
Kirsten took Kylie to Pittsburgh for her appointment today. They left around 5:30 am and arrived home around 8 pm. Kylie’s blood work came back in the normal range and she didn’t need blood or platelet transfusions. She received her chemotherapy and additional fluids before being released to come home. Kylie slept most of the way home and has been sleeping since arriving home.
Recently I was listening to a podcast about how Bible reading is like coming to a Feast.
As I Feast and take it in … it will do it’s work… in and through me ….to nourish my soul and change me.
When I read to Kylie …. She usually wants me to read about Jesus’ death, burial, and resurrection! When I ask her if she would like me to read her a different Bible story… she says …no… she wants that story….
She is feasting…taking it in… and nourishing her soul.. and the Word accomplishes the purpose for which it was sent.
Tomorrow is her next chemotherapy. Praying that side effects are minimal.!!!
Kylie is enjoying her week off from chemotherapy. Her appetite is slowing returning and she is relying on the feeding tube much less than when she first got home. Her next treatment is scheduled for Monday morning. She got her blood work for the week earlier today and everything came back in the normal range.
Since Kylie was old enough to walk she has been around the “basketball girls” because Sean was the girls basketball coach. She grew up watching the Lady Owls at practices and games and attended several team dinners. She has enjoyed having several of the players come and visit the past couple weeks. The week before Kylie was admitted to the hospital she attended a Lady Owls basketball game wearing a jersey so she could look like Sydney. Earlier this week Sydney and her mom stopped by to visit. We are blessed to have such amazing young ladies in our lives.
He is risen…… just as He said!!!
Because Christ lives and conquered death and is my Rescuer…..I have eternal life…….God’s love, His mercy , and this confidence allows me to face whatever comes into my life and say
It is well with my soul.
Kylie completed her 9th chemotherapy treatment on Thursday. Her blood work numbers are trending back in the right direction and she gets an extra couple days of recovery before she returns for her 10th treatment on the 25th.
She continues to move more each day. Her appetite has much improved over the past couple weeks. When Kylie got home she told her dad she felt strong.
Unexpected trip to the ER on Good Friday. Kylie’s NG tube came out through the night. The local hospital did a great job putting it back in place. Now Kylie is home to continue recovering from Thursday’s chemo.
Ana & Riley surprised Kylie and “egged” the house for an early Easter surprise yesterday. She enjoyed going outside and hunting for the eggs 🐣. It has been amazing to watch Kylie gain strength over the past couple weeks and work her way back to walking unassisted.
Kylie took advantage of the nice weather yesterday . She played with bubbles and relaxed in the backyard for most of the afternoon and got to visit with Mimi.
Today they travel to Pittsburgh for her 9th Chemo treatment.
Yesterday Kylie had her appointment with the pediatric orthopedic surgeon. They were concerned about a fracture in her upper arm and some bone loss in her hips. We were thrilled when we were told that her fracture is healing and the weak spots in her shoulders and hips look stronger!
After the orthopedic appointment Kylie arrived at Childrens for blood work to check her platelets and hemoglobin. They both came back lower than they wanted and she received
platelets and a unit of blood. Thankfully, these were outpatient procedures !!!! They arrived home late last night!!!
These 5 days were action packed… I went to chemotherapy with Kylie and Sean. Tried to give each child some individual attention. Cam loved playing ball , legos, and cars with me. Quinn and I read, played airplane (I was the pilot and Quinn parachuted out of the plane), and we made a terrarium. Sean and Quinn were able to go on a lunch date. Kylie and I did some reading, watched some shows, and made a Lego bakery. On the way home today.. there was a raffle and baked good sale to raise money for the family.. that I attended for a short while…. It was heartwarming to see the support that was given… I know Sean and Kirsten really appreciated the kindness and generosity of their community!!! I stopped to see my mom and dad on the way home and the trip home just flew by!!!
This was an enlightening day for me. I loved meeting all the wonderful people that help make Kylie’s day special when she comes for her chemotherapy treatments.
We saw the physical therapist and got some ideas on how to strengthen Kylie’s legs, the nutritionist gave some ideas how to increase her calorie intake, Kylie’s Broviac dressing was changed and then Mary Kate helped Kylie change ducky’s dressing!! The doctors are very committed and caring!!
Kylie completed her 8th chemotherapy and received blood and platelet transfusions. Altogether we were there from 10 am to 5 pm ..plus 3 hours of travel time!!! We are at home resting before returning to Pittsburgh on Monday for routine blood work and an orthopedic checkup!!
I arrived safely to Sean and Kirsten’s home. The 5 1/2 hour drive was nice to just be still and have time to think without interruption.
Be Still and Know that I am God…. Ps 46:10
I began contemplating those words…. to truly know God….. is to Experience Him. Then it was good to rehearse in my mind ways I had experienced Him in the past. . Faithful when I was struggling, Comforter when I was grieving, Refuge when I felt alone.
Tomorrow I will go with Sean and Kylie to Pittsburgh for her chemotherapy treatment.
I want to thank everyone who has been so faithful to pray for our Kylie. We never walk alone for God is our strength and refuge. The news today was very uplifting .
Kylie’s chemotherapy treatment is setup in 3 week cycles. Typically the 1st treatment of each cycle has knocked her down really hard and she sleeps through recovery Fri-Sun before starting to feel better the following Monday. Yesterday was the start of her third cycle of treatment and we are thrilled with her energy level today! She has had minimal nausea and has spent the day watching movies, playing on her tablet, and doing activities!!!
So I saw that those who I invited to my blog recently…..could not see more than the recent 10 posts…. So they were not able to see the first and earliest posts to get caught up…. Well thanks to one of my patients at work…. She helped me get the correct settings so now all the posts can be seen…. The only downside that I see is that now there are adds that are attached …If you want to catch up or reread anything…. You Can!!!! Thanks for hanging in there with me!!!
I will be leaving to see the whole family and help out wherever I can ….on April 6th!!!
Chemotherapy is going well. Kylie’s blood work continues to look good. She is home this evening to rest and recover.
I am looking forward to being with the family next week for a few days !!! Hopefully I will be able to accompany Sean and Kylie to her next Chemotherapy treatment
Music can help me in the toughest of times. I listen to K-Love radio most days … especially on my way to and from work. This song really spoke to me today…whatever happens … God is always with me…He sustains me…leads me….restores me!!!
So glad to see Kylie in such good spirits lately!! Her friend came to visit!!
On March 26 a Spaghetti dinner and raffle basket fund raiser was held for Kylie. They served about 500 dinners and had about 200 raffle baskets.
Sean is a teacher and was a long time girl’s basketball coach. He held many fund raisers over the years to help support the teams. It was so nice to see the community reach out to Kylie.. and support Sean and his family in this difficult time in their lives.
God’s work was done!!!! His hands and feet to lighten the load!!!
The day after chemotherapy has typically involved mostly sleep with a few hours of interaction in the evening. Today has been the exact opposite of that! She has been awake the majority of the day and has been eating snacks, laughing, and smiling more than we have seen the past several weeks.
When Sean and Quinn got home she wanted to go for a walk around the house. We are thrilled with her energy level and her want to push herself.
Thank you Mrs. Frontino for dropping off the cookies. Kylie loves them!
Kylie completed her 6th Chemo treatment today and is currently back at home and resting. After finishing her Chemo the doctors came in to discuss her blood work. They were thrilled that her calcium has stayed in the lower end of normal range. Her white blood cells, hemoglobin, and platelets are all where they need to be.
After leaving the hospital, Kylie got to pickup the wig that she ordered last week! She was thrilled with the color and length.
Some have said to me I know your are busy and Overwhelmed…..
I live moment by moment.
As a believer , I am an Overcomer, by means of faith in the finished work of Christ.
Reliance on God is the secret to my victory over being overwhelmed!
On Monday morning at Children’s Hospital in Pittsburgh….Kylie received a transfusion of blood and a transfusion of platelets. They also continued to give her additional IV fluids. Her most recent bloodwork showed general improvement… so she came home around 4 pm today . Thank you for praying.
Her next round of Chemo is scheduled for Thursday morning!!!
I am so glad I came to visit… I needed to see first hand … day in and day out what Kirsten and Sean are facing. It is not an easy journey …Kylie has rough days after chemo. She is sensitive to light, sound, temperature, and sleeps a lot. Sean has to carry her everywhere she needs to go. Kylie trusts him to move her as it can be painful to move her. She needs to be isolated from visitors as much as possible… so she does not get sick ….as her chemo weakens her immunity . Then Cam and Quinn have to be careful where they go … so they do not bring illness home to Kylie. Kirsten has to prepare her formula for feeding and properly administer her pain and nausea meds, as well as monitor her temperature.
Nutritious meals have been prepared for them each day by a woman God has sent into their lives. I had to take a picture of only two of the many meals she is providing. What a blessing!!!
Sean and I did some yard work.. like cutting down the ornamental grasses and trimming bushes and trees. We wanted to get ahead of the spring growth!!!
After Kylie had a few days of rest from Chemo she emerged with a gift for her sister. It was a candy necklace which Quinn shared with Kylie. It was good to see them have some loving moments together.
I am home now and just got a message that Sean took Kylie to the hospital last night with a temp of 101.5
They were sent to Children’s in Pittsburgh and they got a bed this morning for her. Sean is there with her . Join me in prayer for this little one.
Since Kylie’s last chemo treatment she had been tired and not really feeling well. So we had not been reading that much. Last night she asked me to read from the Jesus Storybook Bible. She asked me to read two stories. Yet after the two she wanted me to keep going…we read about Jesus’ miracle of feeding the 5,000 people from a boy’s small lunch of 5 loaves and 2 fish.
Then we read about how Jesus loved the children and how he wanted all to come to him with the faith of a child… full of trust in God.
We read about Zacchaeus whom Jesus loved when nobody else did… because “ Jesus was showing what God’s love was like –
His wonderful, Never giving up, Unbreaking, Always and Forever Love”
Then we got to the Last Supper which was also the Passover. The Passover was a time to remember how God had rescued his people from being slaves in Egypt. Every year a lamb was killed and died as a Substitute for the people. This Passover God was getting ready for a greater Rescue a permanent Substitute.
We read how Jesus was the Lamb of God who died as our Substitute for our sins.
God had a Wonderful Surprise! For on the third day… as the women were going to the tomb to prepare Jesus’ body… they found the tomb was empty… the angel told them…”Jesus is not dead … He is Risen… He is Alive!!!!” The women ran to tell the others of the good news!
Jesus the Rescuer had accomplished the Rescue Plan…So now we could stop running from God and run to him… so He could love us and set us free!
I asked Kylie if she believed that Jesus came to rescue her ? and she said … Jesus is my Rescuer!!! She immediately wanted to tell her mom and dad that Jesus was her Rescuer… and she did!!!
Quinn will be 4 years old in May and Cameron turned one in in December. These precious ones have needs too !!!!… so my focus here has also been to give them some fun ,attention ,comfort, and acknowledgment as we travel this hard road with Kylie.
So I love to take them to the Creek. We get there on a narrow back road behind their house. Well remember we saw the chickens in the back yard? Well guess what?? We found some eggs on the side of the road!!! We put them on a rock so we could pick them up on the way back from the creek!!! I told you we have adventures when Oma comes!!!!
We had fun throwing rocks in the Creek. Cameron squealed with joy as he threw rocks he could barely lift!!! Quinn enjoyed throwing anything she could get her hands on!!!
Quinn and I made cupcakes! While Cam slept!!
To top off the evening….we had a spa night!!! Kylie also joined in this morning.
Today we read about how the birds don’t worry about where there are going to get their food because God knows what they need and he feeds them….then Jesus spoke of the flowers… Where do they get their lovely clothes? God clothes them in royal robes better than the clothes of Kings!!!….So if God cares about the birds and the flowers…Don’t worry…. We are more important than the birds and the flowers … He loves to look after us too !!
Then we read that Jesus and the disciples were in a boat when a very severe storm came suddenly without warning. The disciples were really fearful…. They could not control the boat…they called upon Jesus to help. Jesus spoke and said “ peace be still” and the wind and the seas obeyed Him… all was calm. Jesus’ friends learned that if Jesus was with them …..they had nothing to be afraid of ..no matter how strong the storm was!!!!
I am overwhelmed by the love and support Kirsten and Sean have received. We have all been blessed by the generosity of so many.
I am hoping to continue to read to Kylie now that we are together in person and she has finished her 5 th chemo treatment.
We read recently that The Rescuer had finally come. He came as a baby…the God who made the universe …..became small…he was wrapped in swaddling clothes… and used an animal’s feeding trough for a cradle. His name was Jesus…. Emmanuel…meaning…God with us…
And as soon as I finished this story… Kylie in her child-like faith…broke out in song….Jesus is the Rescuer!!!! ….Jesus is the Rescuer !!!!…Jesus is the Rescuer…!!!
Now that I am here….we always have an adventure when Oma is around. Well here is the adventure with Quinn and Cameron. The chickens are from 2 streets away and this is the first time to our knowledge they have ever gone this far from their home!!!!
Kylie did get to try on some head coverings after her Chemo treatment…. Anyone who knows me … knows which one I would pick!!!!!
I arrived at 10 pm last night!!! Kylie was waiting for me !!! We had a nice time before she was off to bed
Today , Mary Beth ( Sean’s mom) picked up Quinn to go to preschool and Sean and Kirsten were off to the hospital for another chemotherapy treatment in Pittsburg. After the the therapy, they have an appointment to select a head covering for Kylie. I am watching Cameron!!!
Kylie was given this blanket for her Chemotherapy sessions. It says our motto… Kylie Strong… Thank You… it is her favorite color!!!!
I am excited to go and visit Kylie and the family! The plan is to leave Wednesday evening after work and be there through the weekend! Now I will be able to read to her in person!!!
This was a video Kylie’s school did for her. It was really sweet to know they were thinking of her!!!
Kylie’s chemo and blood transfusion went as expected yesterday. Since her calcium levels were elevated , Kylie went back to the hospital at 10 am today for an infusion to lower that. The infusion ran from 11 am to 3 pm . Now she is home resting.
I am learning to blog as I go and it seems I was not blogging correctly. I was editing my first blog everyday instead of creating a new post. So read the first post to catch up to today and then from now on I will be updating this way!!!! Sorry for the confusion!!!
Kylie’s weekly blood work on Wednesday came back normal and gave her the green light to go to Pittsburgh to complete her 4th round of chemo. She arrived at the hospital around 6:30am and her chemo treatment lasted until about 5:30 pm. She was also given a blood transfusion in the afternoon to help keep her hemoglobin numbers where they need to be. After taking labs in morning ,the doctors noticed that her calcium level had returned to an undesirable level. Before leaving for home , they gave her a shot to help reduce her calcium level short term and scheduled her for an IV infusion tomorrow. Be Strong….Be Brave…. Be Fearless…. You are NEVER alone!!!!!
Trials are placed before us. We know God is with us, yet tearfully and hopefully we begin the journey and see it through with the Lord who gives us Strength… Hope … Courage… and Peace…. no matter what.
I am Kylie’s Oma. I have started this blog to have one place where friends and family can come to be updated on Kylie’s journey and fighting stage 4 alveolar Rhabdomyosarcoma. You will see my journey with the Lord to help us through this trial.
My first prayer is for His Will to be done and my second prayer is for healing.
I will start from the beginning.
Kylie celebrated her 6th birthday on January 8th. The day after her birthday, her parents noticed a slight limp when she walked. Over the next several days, her limp worsened to the point that she had trouble walking more than a step or two. After several visits to different offices and seeing other doctors, her parents were encouraged to take Kylie to Children’s Hospital in Pittsburgh on February 10th for further evaluation.
After being admitted to the hospital, it was quickly determined that Kylie had a large amount of fluid on her left lung and a mass in her abdomen. She underwent procedures to drain the fluid and biopsy the mass. They also took bone marrow samples to determine if cancer had possibly spread. One week after being admitted to CHP, Kylie was diagnosed with a malignant tumor in her abdomen that had also begun to spread to other parts of her body (including in her bone marrow). The name of the cancer is stage 4 Alveolar Rhabdomyosarcoma, which is a very rare cancer. Kylie’s treatment plan consists of 12-42 weeks of chemotherapy and radiation at Children’s Hospital in Pittsburgh. Kylie will also likely require maintenance chemotherapy after the initial 12-42 weeks of treatment.
February 14, 2022 Kylie had a bone marrow biopsy and a port placed in her chest to start chemotherapy.
February 25, 2022. Second round of chemotherapy was completed . Her calcium was high in her blood work and they are monitoring before discharging her.
February 26, 2022
Last night I was asking the Lord for verses from His Word….. .something My Hope Clings To….
In the morning His mercies are new… and this is what my Intercessor shared with me
February 28, 2022 It is late… I worked a long day today and have been thinking of Kylie often throughout my day. Yesterday afternoon my small group came to our home and prayed for Kylie and her family… It was a great encouragement to Rob and I
I know for sure that God is Sovereign and God is Good. I cling to His promise that He will never leave me or abandon me. This gives me great courage as we face the unknown.
March 1, 2022
After quite a while of uncertainty the last few hours with fevers and throwing up and fast heart rate and levels of different elements not in balance…we have emerged to the other side once again with hopefulness. Each round of chemo has its new challenges.
March 2,2022. I am so thankful for the notes of encouragement to our family. I know they are definitely an encouragement to Sean and Kirsten. This was one I received recently ……. . Praying for you all. May He give You wisdom moment to moment. May he hold you close and give you constant peace that passes understanding.
. It was a good day. Kylie’s fever is still a rollercoaster but she enjoyed having some visitors
Kirsten got to spend 2-3 hours alone with Ky. That was good for both of them 😊. Sean was able to leave the hospital for a few hours to spend time with his dad, grandpap, and uncle.
At 9:30 pm ….I got a text from Sean…..Kylie’s bloodwork numbers are all “fantastic” and exactly where they need to be. Her body is reacting to the medication exactly how they were hoping it would. They’ve been trending in the right direction each day, it’s relieving to hear that she is responding to treatment.!!!
March 3, 2022
Kylie is going home!!!!!! March 5, 2022
What a relief to have Kylie family together again in one place!!! She is so happy!!!
This is what Sean had to say on his Facebook and wanted to share it here with those who are not on his page…. For he said it all so well!!! He has been by Kylie’s side everyday 24/7
“We wanted to update everyone that have been reaching out over the past month. Earlier this week Kylie completed her 3rd round of chemotherapy. The morning after chemo the doctors were pleased with her blood work and discussions shifted from inpatient to outpatient care. After another great night of vitals and blood work, Kylie has been discharged and we will continue her treatment as outpatient.
We appreciate all the support and love that everyone has been sending to Kylie. Thank you for the calls, texts, messages, and gifts that you have sent to Kylie. Kylie is well loved and we are overwhelmed with the kindness everyone is showing us.
We are still at the beginning of this journey, but Kylie has shown great strength since we arrived at Children’s and tackles each day with positivity”. ❤️ ♥️ 💜
Kylie loves stories… she asks me to tell her stories all the time. So I decided she should hear stories from the greatest book ever written…..God’s Word … His love letter to us… to know the way to Him. So we have begun! I will share what we are learning as we go . This is her listening to me read.
So we first read about Creation and how strong God is to create everything from nothing. God had one rule and Adam and Eve disobeyed that one rule. They had broken God’s heart and their wonderful friendship with Him… Sin had entered the world. God clothed them and sent them from the garden with a promise …. I Will Rescue You… I Am Coming Back For You…For He Himself Would Be The Rescuer. So now Kylie is excited to see how God’s plan unfolds!!!!!! She has me reading to her every day…. We look forward to our time together!!
March 9, 2022
Today ….Kirsten has to take Kylie to the local hospital to get her blood drawn to make sure it is ready to have her 4 th round of chemotherapy at CHOP in Pittsburg. ( which is scheduled for tomorrow)🙏
Sean has gone back to work on Kylie’s good days to save his vacation days for the days Kylie will need him.
March 10, 2022
As Kylie and I read from “ The Jesus Storybook Bible” every story whispers His name. We saw how God uses all kinds of people in His rescue plan!!!
Abraham had no children… yet God promised to make his family into a great nation …. and the Rescuer would come from his family!!
Isaac was Abraham’s son…In this story we saw how the Rescuer would one day be our Substitute
Joseph was betrayed by his brothers. The Rescuer would one day be punished for something He did not do….to do something good to forgive the sins of the whole world.
Moses was adopted by an Egyptian Pharaoh. God called Moses to set his people free from slavery. The Rescuer one day would Save and set people free from the slavery of sin.
David a young shepherd boy would slay a giant. The Rescuer defeat a greater giant.
Jonah was told to share a message of God to some people.. he did not want to share the message…but eventually he obeyed God. The Rescuer ( also called the Word) would come with Good News for the whole world.
Over the centuries God told his people to get ready for the Rescuer… Now we are at the part of the story to see who the Rescuer is!!!!!
Kylie