Philippians 4:4-9

Rejoice in the Lord, Pray and be thankful, finally … think on things that are true, honest, just, pure, lovely, good report, virtuous, praiseworthy, and the Peace of God will be with me… and the Peace of God , which passes all understanding, shall keep my heart and mind through Christ Jesus!!!

Kylie is constantly in my prayers. She is currently in her second relapse of her very rare cancer ( stage 4 alveolar rhabdomyosarcoma ) she is again in chemotherapy. She goes for 1 week of in hospital chemotherapy and then goes home for two weeks and starts chemotherapy again. This cycle was delayed a week as her platelets did not rebound enough to continue the chemotherapy. So she had blood work this week and now her platelets are at a level to allow chemotherapy to continue. Her spirits are up … I went for 1 week to visit and see the family… we had fun doing Legos, painting nails, sledding, shopping, and coloring our hair!!! Her hair is starting to fall out now so Kirsten had to use clippers to make it shorter… and Kylie was ok with it!!!!

So we decided to celebrate Christmas this past weekend…as Kylie and her family will be going to Disney World right after Christmas. Santa came to visit and we had some great laughs and necessary conversations.

Sean and Kirsten met with Kylie’s oncology team today. Her recent scans showed a small nodule in her right lung and her blood counts continue to be low. Because of this they are stopping the clinical trial she has been on. Kylie will take a short break from chemotherapy while she rests and regains some strength before switching to a new regimen.

Sean and Kirsten discussed multiple options with her team and they were asked to take some time to think everything over before making a decision. Kylie and the family need your prayers as they decide which path is best for her moving forward. Thank you for the continued love and support.

My prayer for them is that they will be strengthened by the Holy Spirit, and that they will be rooted and grounded in God’s love.. and experience him in a deep way so that they can move forward in the strength that he gives them to make the choices that will be right for Kylie and their family. That they will have Peace in the midst of this trial.

✨ CLEAR SCANS ✨

Kylie’s oncology team was very pleased with her results today. Her CT scan shows no evidence of metastatic disease and no new suspicious lesions were identified.

With these results, Kylie is now cleared to move forward with the clinical trial.

Thank you all for the continued love, prayers, and support as Kylie transitions into this next phase of treatment.

Kylie officially became a member of the IUP Field Hockey team last night !!! ❤️🏑

This was such a special and unforgettable moment for Kylie. She is beyond excited to be part of the team #TalonsUp

Today we went to Dutch Wonderland!!!

✨CLEAR SCANS!✨Kylie’s oncologist said that— her scans look great!

The report shows that her lungs and abdomen are clear without any signs of consolidation, nodules, or masses. Yet she still has 12-18 months of chemotherapy cycles if she continues to tolerate.

Kylie will begin her next round of chemotherapy tomorrow.

Her appetite is increasing with some new meds that she is now taking. I could see the difference in some of her newer photos.

I am hoping Rob and I will have a visit from the family by the end of July… depending on how Kylie handles the chemo tomorrow .

So many are praying for Kylie and that is the wind beneath our wings.

It was an early morning trip to Pittsburgh today. Kylie got surveillance scans. The results will help guide the next steps in her treatment.

Praying for her constantly!!!

Kylie finished cycle 7 of chemo and her eye exam showed her eye sight has improved!!!

She will have scans on July 9 to determine her treatment course moving forward.

Kylie had a slightly elevated temperature when she arrived. She got a dose of antibiotics and fluids, her blood work looked good and they decided to move forward with treatment. The team was comfortable with Sean and Kirsten monitoring her at home . So she was discharged and is home now.

They had a family retreat with a group of believers in Christ in Georgia!!! I can just see in the pictures the love that was showered on my kids and I am humbled and so thankful that our family was supported in this way!!

Today Kylie starts chemo treatment in Pittsburgh!!

Went to Epcot

3 years ago Make a Wish sent the family to Disney World and they stayed at ….Give kids the World resort. They went back to visit and see Kylie’s star that she signed.

And met up with friends from home that were also in Disney World!!! Best friend Lydia and her family!!

Today was Hollywood Studios! Looks like fun!!!

Yesterday was a pool day!!

Sean and Quinn left yesterday by car and Kirsten, Cam and Kylie are flying with grandma and grandpa. Sean will meet them at the airport. They needed the car …. For after Disney… they are being hosted in Georgia by a group that sponsors cancer families for a week. So this will give them much needed family time … away from chemo, work, daily grind at home. Praying for Peace, Rest, Rejuvenation, and Love.

Kirsten and Mary Beth ( Sean’s mom) went to Pittsburgh to have the IV chemotherapy started for Kylie.

I had fun day with the Quinn and Cam… making flower cards, playing on swing set , making pretzel bites and chocolate chip cookies!!

Kylie is home now and will continue with her at home chemotherapy pills for next 5 days.

Sean will be returning home tomorrow.

God never intended for us to take on our battles alone. Scripture shows us again and again we have a God who fights for us.

When the Israelites were trapped between the approaching Egyptian army and the Red Sea, God said, “The Lord will fight for you, and you have only to be still.” Exodus 14:14

When a ruddy young shepherd faced off against a hardened, Philistine giant, he armed himself with only five smooth stones “that all this assembly may know that the Lord saves not with sword and spear. For the battle is the Lord’s, and he will give you into our hand.” 1 Samuel 17:47

Give it to God knowing he is God who fights for us. He will never leave us …..we just have to trust and look to Him …. each day at a time.

The insurance company has approved the at home chemotherapy!!! We are very thankful for this answer to prayer!!!

I am now with the family …as Sean is leaving for a class trip with the seniors as their class advisor and chaperone.

In times of waiting, times of need
When I know loss, when I am weak
I know His grace will renew these days
The Lord is my salvation

The Lord Is My Salvation

Song by Keith & Kristyn Getty ‧ 2016

The doctors that are treating Kylie are trying to resolve an issue with the insurance company . The insurance company will no longer pay for At home use of the chemotherapy drug that has been working for Kylie. Her next cycle begins in 3 weeks.

We are praying for wisdom for the doctors in getting a resolution to this matter … which hopefully will be sometime this week.

Kylie had chemotherapy yesterday in the hospital and continues her chemotherapy at home for next 4 days….while at hospital they determined she needed a blood transfusion… so she had that done as well and is now home… we are enjoying her ,Quinn ,and Cameron before we leave tomorrow!!!

Doing makeup!!!

Aunt Erin and cousin Teagan will be coming from Maine to visit Kylie and family for a few days!!! I will be joining them. We will be arriving tomorrow!!! Can’t wait!!!

Yesterday Kylie started cycle four of treatment. Her oncology team confirmed that she’s responding well to the treatment so far. We will continue with the current treatment plan for at least two more cycles before reassessing next steps.

We’re happy to share that Kylie’s treatment plan is showing positive results! While we haven’t yet spoken with the oncology team, the PET/CT scan report brings some great news: “Previously shown pleural-based metastases are no longer discernible.”

There is a new, small lesion on her spleen, described as “too small to fully characterize,” which will require monitoring as we continue her treatment. Overall, we are encouraged by the effectiveness of the chemotherapy and are hopeful for the road ahead.

Kylie had her scans done today and Sean said she handled it well. These scans will help guide the next steps in treatment. On April 3 she will start Her cycle 4 of chemo.

When I tell Kylie’s story to people … many ask why… why would she have cancer at her young age? It isn’t fair from anyone’s viewpoint.

Yet……I believe that God is working on a canvas too big for us to see from this vantage point. I am called to TRUST…

The good news ( gospel) is … Jesus died once and for All…for our debt of sin ..he paid it all ..call on the name of the Lord and you will be saved! Our eternal hope is secure because Jesus rose from the grave and lives !!!

God is asking me… Can you TRUST me with having this experience… even if I never tell you why?

Then it begs the question …can you trust him if you don’t know him? I know Him from reading His Word… and that’s how I have hope. Hope came out of the grave on Resurrection Day !

Why ? isn’t the question

Can I trust him? Is the question!!!! YES

I pray for our Kylie… this is her good news… and that gives me peace and hope .

Kylie just took her final dose of chemotherapy for cycle 3!

The first couple of nights were a bit rough with sleep, but thankfully, she had a much better night of rest last night. Her appetite is also doing much better compared to the first two cycles, which is a huge relief.

They made some adjustments to her medication, and it’s really helping with the nausea and other side effects she’s been dealing with.

Kylie now has a two week break from treatment before we head back to Pittsburgh. She is scheduled to have a CT/PET scan on April 1st before starting cycle 4.

Thank you for all the love, support, and prayers 🙏

Never far from my thoughts and prayers

So many have reached out to Kylie and she has been improving each day. I can see the sparkle coming back to her eyes.

Yet tomorrow the cycle 3 of chemo starts once again. I will not be going this cycle as I have my own doctor appointments and plan to visit Karis and Erin… in the next 2 weeks.

Sean’s mom, Mary Beth, will be available to help out . We have been tag teaming and am so thankful that she can be there when I cannot!!!

Kylie has been able to go outside now that the weather is nicer… and she had some friends over the other day!!! One little boy , in her class at school, shaved his head … in support of her!!!

Kylie is feeling better now… she was able to go outside yesterday… I left to go home yesterday…

Kylie lives in Emeigh, Pa…4 hours from our home in Honey Brook, Pa. so this time I took the train from Lancaster to Altoona. It was great… much more relaxing than driving!!!

I am there mostly to support the family during the hard times of her treatment. In some ways it is sad for Kylie … because she only sees me when she is really sick… when she starts feeling better then it’s time for me to leave… I was there this time for 2 weeks.

I think once the warmer weather comes … it will be better for everyone… for getting outside in the sunshine and walking and running outside is so healing for everyone !!!

We are so thankful for those who have reached out to Kylie… our hearts are warmed by your kindness.. and God’s love to us is evident through you.

Before I left … Kylie gave me such a long hug… I let her embrace me for as long as she needed and I know it was healing for both of us!!

When I got home … Rob had flowers waiting for me!!!

Kylie did not make it to see her classmates …as her tummy was not feeling well… but her friend , Ellie came to visit after school … and Kylie was very happy to see her!!!

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.