Featured Granddaughter needs prayer

Today we received the results from Kylie’s 12 week pet scan & ct scan.

The PET scan shows the tumor in her abdomen is gone, the spots on her lymph node and lung have disappeared, and her bone marrow is not showing signs of cancer!!! The Radiologist said “it’s the absolute best results we could have hoped for”.

Kylie will continue with chemotherapy for at least another 30 weeks. She will also begin radiation treatment in June that will last approximately 7 weeks.

We are still early in Kylie’s treatment and appreciate the continued prayers on her behalf.

God is good…

Rob

 

Courageous Kid Spotlight: Kylie
June 8, 2022

6-year-old Kylie was diagnosed this year with Rhabdomyosarcoma, a rare type of cancer that forms in soft tissue — specifically skeletal muscle tissue or sometimes hollow organs such as the bladder or uterus.



Sharing how Kylie’s journey started, her dad, Sean said, “We noticed Kylie limping in early January. After a couple weeks of watching her limp slowly get worse, we started taking her to different places to get her checked out (pediatrician, orthopedic, physical therapy, chiropractor). We eventually circled back to the pediatrician for a more thorough exam where they noticed one of her lungs wasn’t functioning properly. This led us to Children’s in Pittsburgh. After arriving at Children’s, Kylie underwent several procedures that ultimately led to her being diagnosed with stage 4 Rhabdomyosarcoma. Since diagnosis, Kylie has completed 13 weeks of chemotherapy (out of 42) and she started radiation therapy on June 6th (for 7 weeks).”



In exciting news, Kylie’s updated scans just a few weeks ago showed that her tumor and the major spots throughout her body were gone! Her family is so thrilled at the news and the incredible progress Kylie has made since diagnosis. And so are we!

Kylie loves unicorns & rainbows, princesses, and making slime. She also enjoys crafting with her mom and playing video games with her dad. Her favorite colors are purple, pink, and blue, and she wants to be a Youtuber when she grows up!

Sean shared about his amazing daughter, “She is the most positive person that I know. She continues to smile every day. She sees the good in everything and we are so proud of how she is handling herself through treatment. We are thankful for NEGU and the Jessie Rees Foundation because they show that we are not alone in Kylie’s fight against Rhabdomyosarcoma. The support from our local community and beyond has been incredible and we appreciate all the support that we have received.”

Kylie also receives a ton of encouragement and support from her amazing SuperSibs, Quinn, age 4, and Cameron, who is 1. Sean tells us that Quinn really looks up to Kylie and is so great at supporting her when she’s not feeling well. Cameron loves watching videos with his big sis on her iPad when he’s not busy chasing Kylie around the house. We can’t imagine how much laughter, silliness, and love fills that house!

We are so honored to encourage Kylie and Courageous Kids fighting cancer every day through ClubNEGU. This free program is for all Courageous Kids, their SuperSibs and parents. Each ClubNEGU family receives fun doses of hope, joy and love each month!

 

Kylie spiked a fever this morning before her radiation appointment. She was admitted to the hospital for monitoring. They gave her fluids to help with hydration and they are considering additional changes to her nausea medication. The side effects from radiation have slowly increased over the past couple weeks to the point that her parents were struggling to manage them at home. Thankfully, her temperature has returned to normal .

Her intestines are under a lot of stress from the radiation causing her formula not to absorb properly. Things are being adjusted and an inpatient setting better fits her needs while they adjust her nutrition. They are switching her to IV nutrition.

It takes some time to adjust to the right amount and then train her parents how to administer it properly.



Kylie is on track to get radiation tomorrow. She’s halfway through the radiation treatments.

Thanks for your continuing prayers

Rob

 

I really appreciate your prayers in this difficult time.

As Kylie was admitted on Wednesday morning they did a quick assessment and noticed that her oxygen level was lower than it should be and her respiration rate was slightly elevated. They took an x-ray to check her gastric tube placement and noticed that she has some minor fluid on her lungs and they also noticed a small spot in her intestines that they wanted to investigate further. To allow her intestines time to heal and reduce the nausea that she has been dealing with they have switched her to IV nutrition for the remainder of her radiation treatments.
After minimal improvements over the past 48 hours they adjusted Kylie’s medicine, gave her a blood transfusion, and took addition x-rays and a CT scan. She has also been moved to the ICU to be monitored more closely. The doctors have a plan in place and we will be patient as they adjust her medications to help her feel better.


As always, she is in good spirits and continues smiling through each obstacle. Thank you for the continued love and support! #kyliestrong

 

Kylie completed her 24th radiation today.
She is feeling much better. Her blood work and vitals have returned to normal. She has been keeping busy painting, singing, and playing instruments.
The hospital has started allowing siblings for short visits. Her younger sister (3) and brother (1 1/2) got to visit Kylie in the hospital for the 1st time yesterday.

The medical team is being cautious with Kylie. She has 6 radiation treatments remaining and although she is much improved from last week they would like to continue monitoring her while she finishes this vital piece of treatment.

Rob

 

On July 24th, Kylie completed her 30th and final radiation treatment and was allowed to return home.
She is feeling better and her appetite is much improved.
She began her weekly chemotherapy treatments last Thursday.
These will continue for a few more months and eventually decrease to 3 times per month.

I may be reading between the lines but the radiation doctors said that typically radiation treatments in a child will decrease their overall height by about 8 inches. So they said she may only grow to 5 foot 2 inches -- in my mind that means they expect her to grow up!

God is good! Thanks again for your prayers.

Rob

 

It’s been a rather rough month.
A side effect of the radiation treatments was some damage to her abdomen, they inserted an abdominal tube to facilitate drainage of the fluids that were collecting.
She began running a temperature due to an infection.
Her blood levels dropped quite low and she began having trouble breathing.
So they admitted her to the ICU, placed her on a breathing machine, treated the infection, and transfused her with some blood products.

The breathing tube came out last Sunday, the abdominal tube came out yesterday.
She was just transferred out of the ICU yesterday.
Today they began her tube feedings again (she had been on IV total parenteral nutrition (TPN). Now she’s hungry and beginning to eat orally again…a good sign.
Physical therapy has been working with her to help her get up and out of bed again.

And something new… National Geographic asked if they could follow her story. They have taken a bunch of pictures and want to schedule a home visit. They were excited to talk to a patient/family that wasn’t in hospice but still receiving supportive pain management care.

My daughter and SIL are doing as better than expected through all of this.
The events are certainly bringing the extended family together
Prayers are alway appreciated.

Rob