A New Chapter in Our story has Begun

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!!!!!