Featured Granddaughter needs prayer

Please pray for my 6 year old granddaughter.

About 6 weeks ago she was injured by a classmate in first grade.
She began to have trouble walking and was fearful about returning to school.
My daughter took her to the doctor a few times and finally to a physical therapist.
The therapist saw her poor gait and suggested a chest X-ray.
That was a week an a half ago… she went straight to Children’s Hospital of Pittsburgh (about 2 hours from her home).

Since then she has had her heart and lungs drained of fluid and chest tubes to keep them drained.
Nasal cannula oxygen and continuous ekg monitoring
Numerous scans and x-rays
A biopsy of an abdominal mass
Blood transfusions, central line placed, bone marrow biopsies, tube feeding,
And a morphine infusion to ease the pain.

Today she starts chemotherapy for a stage 4 children’s cancer
If things go well this will be a year to a year and a half treatment ordeal.

My daughter and her husband are Christians.


Rob

 

Update

Many prayers have been offered, we appreciate the concern
The community has been generous and donations have started pouring in to assist them.

KYLIE'S FIGHT, organized by Shirley Lombo

The diagnosis is an aggressive, stage 4 (metastatic), Alveolar Rhabdomyosarcoma.

She has had 2 chemo treatments and will continue to receive them weekly over the coming months.
They have transitioned her IV morphine to an oral substitute.
Tube feeding has been increased, she’s been loosing weight.
She has been getting physical therapy and is able to walk with the aid of a walker.
The plan is to send her home and to return weekly for chemo treatments.
Her parents will be taught how to give injections for a variety of special needs.



Rob

 

My granddaughter is the hospital sweetheart.
Here she is after giving stick on tattoos to her doctors and nurses.



Current plans are for 12 to 42 months of once-a-week chemotherapy.

They would like to send her home between sessions.
After the second dose of chemo, her electrolyte levels went haywire spiking her heart rate into the 180’s and causing a few days of nausea and vomiting.

After dealing with that, things settled down and returned to a sort of normal.
She received her third session of chemo yesterday.
Hopefully she will get to go home Saturday.

The family has received an outpouring of sympathy, love and prayers from a vast community of supporters.

More than $20k has been donated to help the family.
Gifts of toys and specialized clothing have poured in (don’t need anymore!).

She has her good days and her not-so-good days.
Her parents are in good spirits.
Her father says, “I’ve adopted the mindset. Make her good days great and her bad days comfortable.”
He has spent most of the days and every night at her side.

I covet your prayers.

Rob

 

Correction: 12 to 42 weeks of chemo…

 

Her dad writes:
Kylie had an enjoyable 1st week home. She missed her brother and sister and they showered her with love when she arrived home. Her weekly blood work on Wednesday came back normal and gave us the green light to come to Pittsburgh yesterday to complete her 4th round of chemo.

We arrived at the hospital on Thursday, around 6:30am and her chemo treatment lasted until about 5:30 pm. She was also given a blood transfusion in the afternoon to help keep her hemoglobin numbers where they need to be. After taking labs yesterday morning the doctors noticed that her calcium level had returned to an undesirable level. Before leaving for home last night they gave her a shot to help reduce her calcium level short term and scheduled us for an IV infusion the following day.
Kylie is happy that she can continue her treatment as outpatient as long as her calcium level returns to normal by next week.
Kylie is in good spirits (minus the 6 hours in the car) and is showing incredible strength as she navigates this journey.
Thank you for the continued support and prayers. They are greatly appreciated!

 

From my wife’s blog:
Kylie

Since Kylie’s last chemo treatment she had been tired and not really feeling well. So we had not been reading that much. Last night she asked me to read from the Jesus Storybook Bible. She asked me to read two stories. Yet after the two she wanted me to keep going…we read about Jesus’ miracle of feeding the 5,000 people from a boy’s small lunch of 5 loaves and 2 fish.

Then we read about how Jesus loved the children and how he wanted all to come to him with the faith of a child… full of trust in God.

We read about Zacchaeus whom Jesus loved when nobody else did… because “ Jesus was showing what God’s love was like –

His wonderful, Never giving up, Unbreaking, Always and Forever Love”

Then we got to the Last Supper which was also the Passover. The Passover was a time to remember how God had rescued his people from being slaves in Egypt. Every year a lamb was killed and died as a Substitute for the people. This Passover God was getting ready for a greater Rescue a permanent Substitute.

We read how Jesus was the Lamb of God who died as our Substitute for our sins.

God had a Wonderful Surprise! For on the third day… as the women were going to the tomb to prepare Jesus’ body… they found the tomb was empty… the angel told them…”Jesus is not dead … He is Risen… He is Alive!!!!” The women ran to tell the others of the good news!

Jesus the Rescuer had accomplished the Rescue Plan…So now we could stop running from God and run to him… so He could love us and set us free!

I asked Kylie if she believed that Jesus came to rescue her ? and she said … Jesus is my Rescuer!!! She immediately wanted to tell her mom and dad that Jesus was her Rescuer… and she did!!!

 

She has been through 7 rounds of chemo.
The last two without any major problems.
After 12 weeks they will begin daily radiation therapy.
Her family plans on renting a home near the hospital during the summer.

The local community has given overwhelming support to the family.
A spaghetti dinner in support was attended by 500 people.
A nearby church is providing meals.


Thank you for your continuing prayers.

Rob

 

The plan is for 3 more weeks of chemo then begin daily radiation treatments.
She had her central IV line changed this week and continues to have nausea after the chemo. Earlier this week she tossed up her feeding tube and had to have that reinserted.
Many times she gets a procedure done, the hospital staff use her teddy bear to show her what they are going to do. That poor bear has been through a lot.

Bear’s x-ray

Rob

 

So far Kylie has finished ten weeks of chemotherapy. She has had a few busy days in Pittsburgh; she had another central line placed yesterday in preparation for stem cell retrieval, and they changed her feeding tube,
They did some blood work, she received a platelet and blood transfusion, and she even found some time to make some slime
Her blood work came back as hoped and showed enough stem cells to move forward with the stem cell retrieval (done earlier today).
Kylie seems to be doing well through it all.

thank you for your continuing prayer.

Rob