Featured Granddaughter needs prayer

We have our hopes but no certain expectations.
God is good through it all.

Rob

 

The last month has had many ups and downs.
She spent more than 2 weeks at Children’s Hospital in Pittsburgh.
During that time she passed the halfway milestone in her chemotherapy treatment.
She returned home for a short while but developed a fever and returned to the hospital on September first.
They began antibiotics, treating her for neutropenia (an absent white blood cell count) for about 2 weeks…and sent her home as it began to rise.
But perhaps too soon, another fever developed last week and she was readmitted.
Through it all she generally remains in good spirits. Tough kid!

Today we received the results from Kylie’s 24 week scans.
No Evidence of Disease!!! We are thrilled with the results and are happy to hear that the treatment plan that she is following continues to work.
Kylie will continue with frontline chemotherapy for at least another 18 weeks before transitioning to maintenance chemotherapy.
The doctors are still investigating the cause of her most recent fevers but believe that it might be due to adrenal insufficiency from the radiation she received. They continue to run tests and hopefully we have an answer soon. Until then, the team will continue to monitor her.
We are still early in Kylie’s treatment and appreciate the continued thoughts and prayers.

Rob

 

Kylie spent much of this month at Children's Hospital of Pittsburgh.
Problems with gastrointestinal bleeding caused her blood count to drop precipitously, requiring 5 units of blood early in the month.
She has developed close relationships with so many of the hospital staff. Various organizations have contributed to helping her (and her family) stay mentally fit.
She was discharged earlier this week and looks forward to Halloween.

She connected with a young 10 year old, Audrey Hope, who is also fighting the same cancer. They are currently chatting about all their favorite things while playing a computer game, Roblox together.


Through it all she remains in good spirits.

Follow Kylie's story on Facebook @ KylieStrong - Fighting Rhabdomyosarcoma

Rob

 

Kylie’s had quite a rough time recently.
She has been loosing blood from a chemotherapy induced GI disease and has required multiple transfusions.
They were going to perform a scope but kept putting it off due to her weakened state. Finally today they settled on a diagnosis of the problem.
The medical team decided that they will forgo the last 3 primary chemotherapy treatments. She has been placed on IV nutrition again to rest her bowels and allow them time to heal.

There have been many ups and downs.
Last night she was in a lot of pain; she father said through it all she showed appreciation and was thankful for the staff’s attempts to ease her pain.

Currently the plan is that once she is stabilized they will initiate a year of secondary chemo (I think it is an oral type).

Appreciate your continuing prayers!

Rob
KylieStrong - Fighting Rhabdomyosarcoma on Facebook

 

In 2022, Kylie completed:
33 chemotherapy treatments
7 weeks of radiation
100+ days inpatient
Dozens of blood and platelet transfusions
6 PICU stays

She is more active, physical therapy has helped to strengthen weak muscles.
Her appetite has greatly improved, although she still has her tube feeding.
Her current chemo routine has been adjusted to deal with the abdominal bloating due to liver injury, a side effect of her radiation therapy.

A local church continues to support them with food, fellowship and family support.

Her 7th birthday is January 8.

Thanks for your continuing prayers over this new year.



Rob

 

Thanks for asking. We still highly value your prayers.

Kylie receives daily oral chemo at home and continues to get weekly maintenance chemo at Children’s Hospital in Pittsburgh.
She is eating well has regained some weight of the weight she lost so they removed her feeling tube.
She is even beginning to grow some of her hair.

Future plans are to place a internal chemo port to replace the external Broviac tube they currently use.

She is in good spirits and attends weekly physical therapy. School is done remotely.

As her doctor says, let’s keep this boring.

Rob

 

I was reminded that Kylie began this journey a year ago.
Amazing how quickly life can change

February 2022 to February 2023


God is good!

Rob

 

Yesterday Kylie had her Broviac tube removed (a double lumen intravenous catheter used for chemotherapy) and an internal port was placed. This will allow more activities (like getting into a pool in the summer) and reduce the number of hospital visits. It was a bit traumatizing but she was a trooper



She decided it was time to cut her hair…
…so she had a visit with a hairdresser too. This is her Oncologist at Children’s Hospital in Pittsburgh.

Kylie is doing well and continuing to maintain her health through this secondary treatment period. My wife left yesterday to help them out for a few days.

Thank you for your continuing prayers.

Rob

 

Here it is, almost May!
Kylie continues her thrice monthly trips for IV chemotherapy at Children's Hospital of Pittsburg and her daily oral chemo at home.
She has her ups and downs, occasionally missing or holding off on chemo due to lower than normal blood counts.

I received a text this morning that they were taking her to the hospital due to a high fever. They are currently resting in the ER preparing to be admitted.
...never dull, always on edge and ready.



Pray for Kylie.
Pray for Kylie's family too.

Rob

 

Kylie’s cancer is quite rare so the community of families that have children with this cancer is small.
However she was introduced to a young girl, about 2 years older and almost a year further along in treatment last year. [Search Facebook - Team Audrey Hope]

Audrey finished her treatment and has been quite active, joining sports teams and catching up on the many activities that she missed during treatment.

Every three months they return to the hospital for a battery of scans.
They call the time, scanxiety, the worry over the test results.

Last week, they received devastating news. Audrey’s test results showed that the cancer has returned. She had surgery yesterday and began chemotherapy again today.

Heartbreaking news for Audrey, her family and the whole cancer community.

What a burden the parents of these children bear.

Kylie’s doing well currently. Thanks for your prayer support.

Rob


Kylie and her sister