Kylie

We had a great 4 days together!

I am going to put in a full day of work today and then I am driving 5 1/2 hours to see my cutie pituties…. Kylie, Quinn , and Cam . Then 4 days of fun!!!! Can’t wait. See y’all soon!!

Thank you to all who prayed for Kylie…. We really appreciate your support and intercession on her behalf!!!!

Off to Pittsburgh to meet with the liver specialist. Quinn has been really curious about Kylie’s weekly hospital trips and is tagging along 🥰🎗️💛

https://fb.watch/k0bWWXmnlV/?mibextid=DcJ9fc

Kirsten and Sean posted the above link and I thought it was so touching and so Kylie!!! Love you…

For those of you who do not have Facebook… you will probably not get to see it… this is what it says

Do you really think she keeps going because it doesn’t hurt?

The truth is it really hurts more than she will ever admit to you

When she is tired she keeps going … when she’s scared she keeps going…when she feels she is going to fail she keeps going … when she feels like she is all alone … she still keeps going!…because she knows standing still is not going to get her to the life she deserves …. So you can get with her… or… get out of her way…cause no matter what .. she is going to keep on going…

Kylie …..Keep On Going … and we will be here praying and cheering you on!!!!

Kylie went for her chemotherapy treatment this week and it was postponed ….as her numbers were lower than expected…. She will also hold back on her daily chemo pill to give her body some time to recover.

Orthopedics: The orthopedic surgeon reviewed her scans and determined that the bone concerns from previous scans are still present, but are stable and will likely resolve with time and continued PT. She has no restrictions and should continue to move as much as possible!

Chemotherapy: Her blood work looks great and her electrolytes are back in the normal range. She received chemotherapy as planned.

Kylie started cycle 4 of maintenance chemotherapy on Thursday.

She had her port accessed for the 1st time ( as they had previously removed her broviac port , which was external) and handled it really well! Her blood work looked great except for her electrolytes. She received chemotherapy as planned and a bolus to remedy the low electrolytes. Much longer day than they had anticipated.

Happy St. Patrick’s Day ☘️

Kylie woke up on Friday feeling the best she felt in over a week. Switching her medication and the electrolytes infusion definitely helped make her feel better. Her appetite started to return and she asked for eggs (and chocolate) for breakfast.

PT has also been going well. Her CT scans showed some deterioration and they will focus on slowing or reversing those concerns as she continues to progress through treatment.

Princess Party 👸

Kylie and Quinn have been spending so much time together the past couple weeks! 💕

On Friday, Kylie will have her scans to see how her body has been responding to her treatment . This a a time filled with anxiety and hope . Lauren Daigle just put out a new song called . “Thank God I Do”. Very timely and thought I would share some of her words below. A prayer to God…..

You’re my safe place
My hideaway
You’re my anchor
My saving grace
You’re my constant
My steadiness
You’re my shelter
My oxygen

I don’t know who I’d be if I didn’t know You
Thank God, I do

Amplified Bible 1 Peter 5:7
casting all your cares [all your anxieties, all your worries, and all your concerns, once and for all] on Him, for He cares about you [with deepest affection, and watches over you very carefully].

Universal : Island of Adventure

The wonderful trip is almost over. I am so glad they had this family time together!!!

They learned that Kylie is a thrill seeker and wanted to do all the rollercoasters and motion rides multiple times!!!

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.”

I am so happy they finally have met as I know Kylie was so excited! What a great place to make special memories together!!

Have a great time!!!!!!!

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!

Love you always!!!

OMA

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

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!!!

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 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!)

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.

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.

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

“The Eye of the Storm “. by Ryan Stevenson

While home … Kylie has started physical therapy

She has had a special visitor, Lydia!!!

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.

Kylie has been discharged!

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.

Love and prayers are greatly appreciated 💕

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 🙏

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!!!

Song by Blessing Offor

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! 🎄 ⛄️ ❄️

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!

Kylie is having a great week at home! Her feeds are going really well. She is getting lots of sleep and has experienced minimal nausea.

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!

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

1st snow of the year and Kylie HAD to go outside! And a quick visit with Eddie 🐶

This girl can’t be stopped! Late night crafting in the “moon room” two nights in a row! ❄️ 🌙

The team gave her several goals before she can be discharged and she has checked several off the list! ✅

Feeds continue to go really well. She is inching closer to full strength. Then TPN can be reduced and removed completely!

Kylie is focused and doing everything she can to get home for Thanksgiving! 🦃 🥧

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.