Always Remember Me: The Story of Jedidiah Lusk

By Cynthia Lusk

How do you survive the hours and days living with the knowledge that your son is slowly dying from a glioblastoma multiformes brain tumor? How do you continue to share your love with family while attempting to enjoy the time of your life? Join Cynthia Lusk as she shares her story of the Lusk Family after their youngest child developed brain cancer.

As her husband, Scott, texted to his extended family, The good news is: Jedidiah gets a make-a-wish! The bad news is: Jedidiah is eligible for a make-a-wish Oh no!

The family pulled together to show their support and love for Jedidiah; continued to honor God; and lived and loved through laughter, tears, and prayers on their eleven-month journey from Jedidiahs diagnosis until his untimely death that came all too soon.

• Language: English
• Publisher: WestBow Press
• Release date: Aug 5, 2014
• ISBN: 9781490837185

Cynthia Lusk

Cynthia Lusk’s nine-year-old son, Jedidiah, developed a terminal brain tumor in 2010. Cynthia found the courage to write about her son’s experiences while embracing the boldness to celebrate their life left together. She and her husband, Scott, have been married for twenty-seven years and reside in rural Plumas County, Northern California.

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Copyright © 2014 Cynthia Lusk .

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the publisher except in the case of brief quotations embodied in critical articles and reviews.

Credit for the cover image by Jedidiah Lusk.

WestBow Press

A Division of Thomas Nelson & Zondervan

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Bloomington, IN 47403

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Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Any people depicted in stock imagery provided by Thinkstock are models, and such images are being used for illustrative purposes only.

Certain stock imagery © Thinkstock.

ISBN: 978-1-4908-3717-8 (sc)

ISBN: 978-1-4908-3716-1 (hc)

ISBN: 978-1-4908-3718-5 (e)

Library of Congress Control Number: 2014908713

WestBow Press rev. date: 8/5/2014

CONTENTS

Dedication

Chapter 1

Chapter 2

Chapter 3

Chapter 4

Stories From Jedidiah’s Family & Friends

Our Memories Of Jedidiah

The Day My Son Died

Reflections On Jedidiah

Remembering Jedidiah Lusk

Stories From Jedidiah’s Mom

DEDICATION

This book is dedicated to the family who was dedicated to Jedidiah- from birth, throughout his life, and until his death: my loving husband of over 28 years; Scott, my beautiful daughter; Jessica, my son; Justin, AKA Mr. Perfect, and my mother; the incredible Blue Nanny. Thank you all so very much for sharing Jedidiah!

CHAPTER 1

Sunday, February 14, 2010

EEeugh! Don’t you think that looks like chicken poop? asked eight year old Jedidiah, as he kneeled on the frozen February ground. His voice, though weary, was tinged with curiosity.

Justin’s roosters have been out running around the yard, but THAT is my own vomit.

Okay! I said, as I scooped up my 68 pound son into my arms. Now, let’s get you to the hospital.

I had been carrying Jedidiah from our house just moments earlier when he warned, Two, four, six, eight, I think I’ve got to regurgitate… PUT ME DOWN NOW!! as I quickly lowered him to the ground.

Blaugh! went Jedidiah as he threw up for the fifth time that morning.

Come on! I stressed, We’ve got to get you to the doctor! as I heaved myself to my feet and carried Jedidiah to my waiting car.

Are you coming Scott? I yelled back to my husband who was just emerging from our house. I am ready to go NOW!

But…, said Scott with a concerned look on his face, We did not even get to open our Valentine’s Day presents yet… his voice trailed off as he opened the car door for me to put Jedidiah into the back seat of the running Subaru.

Jedidiah leaned weakly to the side while I connected his seat belt. Just that morning I noticed how pale his skin looked, and it frightened me. But even scarier than his skin color, was the size of his pupils in the middle of his deep brown eyes. They were abnormally large in the winter morning light.

Scott got into the front right bucket seat while I slid into the driver’s seat. I turned on the CD player and pushed Jedidiah’s favorite CD in while accelerating down the quarter mile dirt driveway. We bounced over the rocks, splashed through a couple mud puddles, and came to a paved road. I turned the car left on to the county road while tossing a round plastic container to the back seat.

Here, Jedidiah, take this in case you have to throw up again.

He looked up at me in the rear-view mirror with questioning eyes. But don’t you think my vomit REALLY DID look like chicken poop? he persisted.

I slowed for the stop sign at state route Highway 70, looked both ways and made a right turn. Okay, yeah, I breathed out. So it was kind of like chicken poop.

Well, didn’t you see how it was a little yellow and some brown, but had that watery clear stuff all around it? Jedidiah asked innocently.

Not in the mood to discuss the merits of chicken poop OR my son’s vomit, I turned up the volume on the music CD. Here, listen to the Kepple’s. Your favorite song, ‘Katie’ is on next.

My mind was racing a mile a minute as I drove the 18 miles to the hospital in the nearest town of Quincy. What could be wrong? I silently screamed to myself, but wanting to yell out loud at the top of my lungs, WHAT’S WRONG WITH MY BABY???"

Just two days earlier, Jedidiah was acting like a normal little boy. He spent most of the day on Friday playing in the stream near our home in Cromberg, California. He splashed in the water, making dams and racing bark boats with his 15 year old brother, Justin. There was no school that day, due to a teacher work day. I left home and went to work, to ride snowmobile patrol with the US Forest Service on the Mt. Hough Ranger District of the Plumas National Forest.

I was to meet back up with the whole family in town that afternoon, at a Spaghetti Feed at the local high school. It was a fund raiser for the Quincy High School Wrestling Team.

When I saw Jedidiah again, he was skipping across the high school parking lot, the bottom of his pants soaked up to his knees. He saw me and ran over to grab my hand, and started swinging my arm.

Jedidiah, your hand is FREEZING! I gasped. What have you been doing?

He flashed a smile, Oh just playing with Justin. We had a good day. But I kind of have a headache now.

I turned to his Dad, Scott! I scolded. Why isn’t Jedidiah wearing a coat?

Scott shrugged, He said he wasn’t cold.

But he is soaking wet and his hands are freezing! I protested. We turned and went to the school cafeteria for the Wrestling Team Fund Raiser. We each consumed a large plate of spaghetti, some garlic bread, and a can of soda pop. We spent time visiting with friends, other parents, and students on the Wrestling Team. We all returned to our warm, cozy home that night with full stomachs, and happy memories.

Later that evening, Jedidiah insisted that he was seeing double. He told his Dad and me, You guys both have two mouths, two noses, four eyes, four ears…

Really? I asked, only partially believing him, as we were getting ready for bed. Now you hop into the covers and say your prayers.

"Yeah, said Jedidiah, as his wavering finger pointed out the various locations of my multiple eyes, ears, noses and mouths.

I chalked it up to him being tired. What else could it possibly be? You know kids, I told myself, they have such vivid imaginations!

CHAPTER 2

Slow down and pull up right next to the Emergency Room door, my husband insisted. That way we don’t have to carry him too far.

Yep, I agreed as I swung the car around into the vacant parking lot, and slowed near the emergency entrance.

I put the car in park, jumped out and gently picked up Jedidiah as Scott held open the car door.

I carried him through the Emergency Room door, as a lady in official uniform was walking out. She frowned at my car’s location and barked, You can’t park there!

I know! I retorted. I’ll be RIGHT back to park it. Couldn’t she see that I had a sick child in my arms? Like there was going to be a rush of vehicles right behind me, on that Sunday morning, in that small town, population of a whopping 5,000 people?!

I carried Jedidiah to one of two exam tables in the small ER, and went back to properly park the car while Scott answered questions to fill out the required paperwork. When I returned I was happy to see my RN friend, Debbie DeSelle, at Jedidiah’s side, asking him questions on how he felt.

And I keep throwing up and throwing up… Jedidiah said, And then everybody has four eyes and two mouths, and even two noses!

Does your head hurt? asked Debbie.

Yeah, kind of, but mostly I don’t like throwing up.

Debbie continued her exam, shining a penlight in his eyes, then grabbed a small blood pressure cuff off the wall, wrapping it around his arm.

The ER Doctor came walking in, clipboard in hand. Oh, it’s probably just the flu. It’s going around, you know. She turned around to eye me. Are you his mother?

Yes, I am. But I don’t think it’s JUST the flu…

She cut me off, We have already had four or five kids in here this morning, all throwing up, with headaches, and all achy… With their parents all concerned. What makes you think he is any different?

Well…, I answered slowly, If you’d take a closer look, you will see that his pupils are dilated.

Debbie stood next to Jedidiah, nodding her head up and down in agreement. I think we should get him a CAT scan.

Thank you Debbie! I said, while eyeing the doctor back.

Sounds good! The doctor made a note on her clipboard, then briskly walked out, just as Scott came walking in.

Front desk lady said there have been a bunch of kids coming in with the flu today. That’s probably what it is, Scott said reassuringly.

And he is very dehydrated, he needs an IV to get fluids in him Debbie stated, After he gets that CT scan.

Huh? Scott, taken aback, glanced from Debbie to me, and then over to Jedidiah.

Uh, well yeah, I agree. I think we should get a look inside his head…. Just in case… My voice trailed off.

My mother, a Registered Nurse who lives with us, had pulled me aside the night before to talk about Jedidiah. You know, these three symptoms together; vomiting, headaches, and double vision, indicate increasing intracranial pressure. Since he hasn’t had any trauma that we know of, falling or hitting his head, it could be something else….

But, I don’t think he is having double vision now. Interrupting her, I went on, Besides, that was on Friday night. I think he got over that. I remarked reassuringly.

"Are you sure? She looked at me, doubtful.

I think so…. I said weakly. I didn’t really know for sure, I just hoped he had. Why, what else could it be? Knowing I really did NOT want to hear the answer.

Well, there are lots of different kinds of tumors and things that grow, putting pressure on the brain… she began.

Yeah I nodded, walking away. I was right, that’s was NOT what I wanted to hear.

Debbie and Scott were sliding Jedidiah on to a bed sheet, in preparation to move him over to a wheeled gurney. I stood staring, lost in thought. Jedidiah had a real bad headache about ten days previously. I realized, just then, what sudden onset really meant. He and I were sitting in the car at the local shopping center, waiting for Justin’s basketball practice to get over, and then it would be time for Jedidiah’s basketball practice. We just had returned from a visit to the Dollar Tree- one of Jedidiah’s favorite pastimes while we were in town. He was taking his newly purchased toy out of the bag to play with it, when Jedidiah quickly clamped his hands to his head, Owey, owey, OUCH! He said. Then he rolled over on his side and yelled, I am NOT kidding Mom, my head hurts!!

Puzzled by his behavior, I calmly asked, Like, just now? It hurts really badly, all of a sudden?

YES! Jedidiah wailed. Make it stop! Do something…now…please!

Increasingly alarmed, I wondered just what to do. Do you want some aspirin or something? I asked.

Jedidiah flopped around in the back seat of the car, crying in earnest now.

A small wave of panic began to roll over me as I heard my son calling out in distress and I watched him writhe in pain.

Wait a second, I told myself. I am the grown up here, I can see he is in obvious pain. I can make a decision. I don’t want my little boy hurting!

Jedidiah- you wait here, I told him. I will run inside Rite Aid really fast and get you some medicine to make it stop!

K….Hurry! He squealed in high pitched voice.

I dashed in and grabbed some children’s chewable painkillers, quickly paid at the counter, and ran back to the car. Shaking out three purple tablets, I climbed in the back seat. Here Jedidiah, these are grape flavored. Eat them.

He could barely focus long enough to crush the tablets between his teeth, as I slid them in his mouth one at a time. I gathered Jedidiah up into my arms and rocked him until the pain lessened. Then we drove across the street to pick up Justin. Jedidiah did not feel like playing basketball that night. His headache did gradually go away, and did not return until Friday night.

CHAPTER 3

Scott was talking to Debbie as she prepared to hang the bag of fluid on the IV pole. Okay, so we give him some IV fluids, make sure he is not dehydrated, then we can take him home? he asked hopefully.

Well, Debbie hesitated. Let’s just wait a bit and see what we can find out from the CAT scan results. Here, Mom, come hold his arm…

NO! was all Jedidiah could say when he saw the needle and knew it was going to poke in his arm.

It’s ok, I tried to reassure him. Just a little sting.

Jedidiah gritted his teeth. Easy for you to say, Mom, when it’s NOT your arm.

The ER Doctor appeared. You might as well relax. We need to get the fluids in him and that will take a while. And I just sent off the CAT scan films to Reno for a Radiologist to read there. It will take some time from them to get back to us.

Scott looked at me, definite worry in his eyes, but he spoke encouragingly to Jedidiah. It’s going to be okay Jedidiah. You will be feeling great again in no time!

The curtain moved aside and a young, tall, pretty girl walked in. Immediately, Jedidiah called out to her for help.

Jessica! Sissy, come save me…They are trying to kill me with this huge needle!

Naw, said Debbie. Nothing to it! as she deftly slipped the needle into Jedidiah’s forearm and adjusted the flow through the tube.

He didn’t seem to react too much, so I loosened my grip on his arm.

So, what’s up? The pretty girl asked.

Jessica was Jedidiah’s big sister, and he definitely looked up to her. She’d turned 18 several months ago, and had moved out of our house and in with her boyfriend. Jedidiah really missed her recently.

Well, Jedidiah had a CAT scan, and now he’s getting all hydrated again. That’s all I know, I replied. We are waiting to hear… I trailed off.

Scott chimed in, He’s just got the flu. Been throwing up so much he’s dehydrated.

Puzzled, Jessica turned to me. Then what is the CAT scan about? Jessica and I had taken the Emergency Medical Technician class at the local college last year, so she knew that procedure was not part of the usual treatment for your average case of the flu.

Can I see you a moment? The doctor pushed the curtain aside and motioned for me to come out of the room.

Be right back!’ I told Jessica. Hoping for some reassurance that my son would be just fine, I followed her to the next room. The doctor turned to face me. We got a call from the Radiologist in Reno."

What? All ready?

Your son, the doctor went on, appears to have something on his brain.

What’s that mean? A ‘something’?

It means a lesion of some sort, she continued on. And the radiologist in Reno recommends that we life flight your son to UC Davis to get it checked out.

Whoa, wait a sec. You’re going too fast for me. Life Flight? Isn’t that for serious stuff? Wait…let me talk to my husband. I groped my way blindly back to Jedidiah’s bedside.

Scotty, c ’mere. I motioned Scott closer. I wanted to tell him away from our son so not to frighten him. Doc says serious stuff. They want to Life Flight Jedidiah to UC Davis!

Huh? Scott looked at me as blankly as I felt.

Come here, I repeated. Let’s go talk to the doctor. Jessica can stay with Jedidiah.

Debbie was walking in as we were walking out. Helicopter ETA is one hour. Let’s get Jedidiah ready. And how much do you weigh, Cynthia? I assume you will be the one to fly with him?

Scott and I stared at each other, dumbfounded. It went from the flu, to ‘something’ on his brain, to a life flight to UC Davis, that quickly? Just what was going on? How could we possibly comprehend what was going on?? WAIT ONE! I wanted to scream, this was all moving way too fast for me!

uh,… uh … I stammered. I had never flown on a helicopter without my fire gear or tools. And I did not even have a travel bag packed and ready to go…

Oh, I guess just me, myself, weighs about one hundred and forty five pounds. I mumbled to no one in particular. I was still trying to get a grasp on what this all meant. And Jedidiah weighs sixty seven pounds.

I went back to Jedidiah’s bedside and gazed down at him. He was so little, so cute, so young and he had always been very healthy. If fact he had been born right here in this very hospital, almost nine years ago. He had only been back for routine check-ups, vaccinations, and one round of stitches. Jedidiah was my baby! He was only eight years old. He was a happy, healthy, and robust, a normal, active boy. Kids like him aren’t supposed to a have a something on their brain!

So, what’s happening, Mom? Jessica broke into my thoughts.

Debbie said they are going to Life Flight him to U.C. Davis. Still in shock, my words sounded hollow. "And I guess I’m supposed to go with him.

What? Jessica’s eyes widened with surprise. "What’s wrong with him? She looked down at her little brother with concern.

Jedidiah perked up. Huh? I get to fly in a helicopter? He seemed to be feeling a little better, and some of the color had come back into his face. Wow, has anyone told Justin yet?

Why U.C. Davis Hospital? I heard Scott question the doctor.

Because they specialize in the treatment of children’s medical emergencies, she answered flatly.

That did not sound good to me. Not good at all….

Wop, wop, wop, I heard the helicopter approaching the hospital. Jedidiah was strapped on a gurney and was being wheeled down the hall, outside the door, and to the helipad. Scott, Jessica and I were all trailing behind. It was a bright winter day outside. I was glad it was not snowing, and thankful it was not foggy- either one would have made a helicopter approach and landing more difficult.

Debbie gave Jedidiah a special soft teddy bear for the trip, and it was tucked under his arm. She gave all of us special, warm, bear hugs. I got handed some earplugs, and Jedidiah got dark glasses to wear. Next thing I know, I was getting seat belted inside the back seat of the helicopter, and Jedidiah was lying in the gurney in the left front. He just fit nicely into that spot. The Flight Nurse was next to me. The pilot was in the right front seat.

Soon we were lifting off and I was waving goodbye to the rest of my family as they got smaller and smaller on the ground at Plumas District Hospital. We flew over the Quincy High School and were gaining elevation to rise above the mountains surrounding town. I saw the white of the Quincy Q flash by, and saw the snow covered Claremont Peak approaching through the glass bubble at the front of the helicopter. I was holding Jedidiah’s hand and I squeezed it tightly, hoping it was a reassuring gesture. I know the flight was exciting to him, but I sure wished it was under different circumstances for the both of us.

I wanted to talk to Jedidiah and point out some of my favorite landmarks down there on the forest we were flying over, but the loudness of the turning rotors prevented that. I saw the rocky bump of Little Volcano and the deep, dark chasm of the Middle Fork of the Feather River as we crossed over. I even caught a glimpse of the Pacific Crest Trail footbridge, where it spanned the Middle Fork near Deadman Springs.

A few minutes later a large body of water appeared below. The Flight Nurse pulled her headphones away from her ear, That’s Little Grass Valley Reservoir she yelled, pointing out the window. I nodded in agreement. Yep, I had seen that from the air before.

Jedidiah’s hand went slack in mine as he fell asleep. Apparently the medications given to him had taken affect. Rest well, my little guy. I love you Jedidiah. I silently told him as I tucked his hand back under his seatbelt. Who knows what the rest of this day will hold.

CHAPTER 4

We landed on the roof of the U.C. Davis Medical Center in Sacramento, California. Jedidiah was taken out of the helicopter, wheeled into the elevator and quickly shuttled down to the Pediatric Intensive Care Unit or PICU as it was called. I blindly followed along behind, my legs feeling as numb as my mind after 45 minutes of sitting stationary during the helicopter flight.

Jedidiah was efficiently transferred into a clean, waiting bed in the PICU. He was hooked up to all kinds of monitors, as nurses bustled about, tending to their business. I parked myself right next to Jedidiah, held his hand and watched the motion all around us, hardly able to comprehend what was happening. The Helicopter Fight Nurse turned over her notes and records to the PICU nurse, and with a quick wave towards me, said they were heading out. Thank you, I was able to call out before the Life Flight crew disappeared out into the hall.

I felt completely abandoned, all alone, and scared in this strange place. I knew my son was in trouble, and I was frightened for him. I was at a loss as to what I could to do to help him. All I knew to do was to stay close, and keep tabs on what was happening. I had my cell phone, my charger, a notebook and a pen with me and the clothes on my back. That would have to do me for now. I would focus on Jedidiah, not my own plight of fright. I realized I needed to be strong for Jedidiah’s sake.

I made a quick phone call to my brother, John Nichols. He lived very close by, in West Sacramento. It was good to speak with him! It sure made me feel a whole lot better. I knew he would do everything he could to help us out. John said he would come by the hospital tomorrow.

The whole night was a busy blur of nurses hooking up monitors to Jedidiah, wires and tubes going everywhere. Lots of sounds of machines beeping, kids crying, nurse’s hushed voices, footsteps everywhere, and never a moment of still quietness. I must have dozed off a couple of times, but I knew I never fell into a deep sleep. Despite the exhausting day, I just could not get any rest. Who could possibly sleep in a time of mental and physical chaos, such as this?

CaringBridge Journal

Jedidiah’s big sister, Jessica, began writing this for us, and we are extremely grateful!

Sunday, February 14, 2010

Mom took Jedidiah into the ER in Quincy. She and her mom, Blue Nanny were concerned that Jedidiah had been puking for two days and had a headache- they both knew those could be symptoms of head trauma. Plumas District Hospital took a CAT scan of Jedidiah’s head and sent the results to a specialist in Reno who said, Send Jedidiah to Davis immediately, ‘something’ had shown up on his CAT scan. Two hours later, Jedidiah accompanied by his mommy, was Life Flighted out of Quincy. Debbie DeSelle, the ER Nurse and family friend was very helpful and supportive the whole day. Thank you, Debbie! By the time I saw him, the IV was already in and he was excited about his first helicopter ride. Here’s a picture of him in the COOL glasses he wore in the helicopter…;)

Monday, February 15, 2010

We learned that nothing in a busy hospital happens as soon as we want it to. An MRI had been ordered STAT that night, but didn’t come until the next day. Jedidiah did a very good job holding still for the 45 minutes it took for the MRI. Mom stayed in the room with him and said it was a LOUD machine, sounded like a freight train. Jedidiah’s headaches went from a 4 to an 8 (on a pain scale for 1 to 10) and he was given morphine. His level of consciousness went down and he slept most of the day.

Mom called while Justin was at basketball practice to update us. The MRI showed the tumor was deep inside the right side of his brain and was putting pressure on little pouches of cerebral spinal fluid, causing Jedidiah’s headaches, double vision and vomiting. Dad and I sat in the car in front of Taco Bell, crying.

Mom’s brother, John and his wife Stevie, live in Sacramento. They visited and made sure Mom has food and clean clothes. They continue to provide my parents with a home away from home. Thank you SO much for your help!

Tuesday, February 16, 2010

Dad drove down to Davis to be with Mom during Jedidiah’s biopsy. Because Jedidiah was squeezed into the day’s already scheduled surgeries, his surgery wasn’t started until three. The biopsy, a high risk procedure in itself, had two purposes: 1. To take out a piece of the tumor in order to study it and find out exactly what it is, to know how to best treat it and, 2. To drill a hole into Jedidiah’s skull that would be left open to relieve the intracranial pressure and allow the extra fluid to drain. The biopsy took over four hours and Jedidiah was moved into the pediatric ICU once it was over. The surgeon’s primary assessment concluded that the tumor might be Glioblastoma multiformes or Astrocytoma. Tuesday ended with a lot of tears. Dad spent the night with Jedidiah so Mom could sleep at her brother’s house and for the first time in two nights, she was able to get more than two hours of sleep.

Wednesday, February 17, 2010

Jedidiah woke up groggy and combative. Dad had several wrestling matches with him throughout the night. Jedidiah wanted to rip off the splint the nurses had on his right arm. After the pain medicine began wearing off the doctors discovered he could not move his left arm or leg. As the day progressed he regained control of his leg but still could not feel his arm. Physical therapy is not a priority until he is stable and out of the ICU. Mom took Dad’s spot so he could drive home to watch Justin’s last basketball game of the season.

Thursday, February 18, 2010

Dad drove Justin and me to UC Davis Thursday morning. This was the first time we’d seen our little brother since Sunday. We were lucky that he was coherent again and not on any pain medicine, but seeing him in that hospital bed was still pretty shocking. He was moved into his own private room in the ICU the night before. He’s got tubes and wires going everywhere. On one side of the room are machines that monitor his vitals, on the other are three bags of fluids that are supplying him with hydration, dextrose and sodium, and underneath the TV that was playing cartoons was a table holding several teddy bears he’s been given from well-wishers=)

GBM.JPG

Jedidiah in UC Davis Hospital bed, with Jessica and Justin during their first visit.

Jedidiah still can’t feel his left arm from the shoulder down or move his fingers when asked, but his hand twitches when he’s unaware of it. So we know movement is possible although he doesn’t think of that arm as part of his body anymore. One of his eyes is half-closed and the other is barely open and one side of his mouth droops.

If you ask how he’s feeling his answer is, I’m in the hospital, how do you think I’m feeling? He is grumpy, and tired of the nurses poking, prodding and waking him up to shine a flashlight in his eyes every two hours. He REALLY wants to eat. He hasn’t been able to for the past three days and he won’t until the Speech Pathologist says his throat and esophagus work correctly. While I was there he demanded a Nerd Rope covered in chocolate, 28 Frosted Flakes and five jars of pickled okras!! Ha-ha, that’s my little brother!…:) Despite his frustration and all the wires he’s doing pretty good. I even got a kiss from him. =)

Dad and Justin went on a quest to get copies of Jedidiah’s MRI to send to our Uncle Tim’s friends- Neurosurgeons from Houston and San Francisco, leading brain tumor hospitals for a second opinion. Jedidiah was asleep by the time we left; he had been sedated to get a PIC. The PIC replaces the other three IV’s he had in. The flexible noodle size silicone tube enters his vein in his right bicep and leads into his superior vena cava (in his heart). This is so he can receive higher concentrated levels on IV nutrition and medication.

Dad stayed with Jedidiah so Mom could take a break and visit her mom.

Trust in the Lord with all thine heart, and lean not unto thine own understanding. In all thy ways acknowledge Him, and He shall direct thy patch. Proverbs 3: 5-6

Friday, February 19, 2010

Jedidiah is still in the PICU, which means he is not yet stable. Dad has been keeping an eye on all of his vitals as well as reading Little House On The Prairie out loud. Jedidiah will be in Davis until Monday at least. We are still waiting on the pathology labs to come back to know what kind of cancer it is, and how best to treat it. Good News of the day: the Speech Pathologist visited Jedidiah at 2:30 and cleared him to eat!!! After three days of not being allowed to eat (and two days of vomiting before that) Jedidiah can eat!!…J They gave him vanilla ice cream right away =). The special box of Frosted Flakes cereal he’s been saving will have to wait a little while though. Right now he’s limited to apple sauce, pears and ice cream, but he can eat =).

8:30 Update: Jedidiah got to eat his Frosted Flakes with Chocolate Milk =) and the Decadron he’s getting is doing its job at reducing the swelling in his head, no more headaches or vomiting.

Rejoice in the Lord always, and again I say rejoice. Philippians 4:4

Saturday, February 20, 2010

More good news! Jedidiah’s vitals were looking good enough last night that the nurses let him sleep the whole night through, no hourly flashlight checks…J He had a big breakfast of sausage, eggs, potatoes and cereal. At two thirty he was moved out of the ICU!!!! Mom and Nanny left Reno, (where they were at the American Endurance Ride Convention), to come visit Jedidiah and to celebrate being out of the ICU. Only one overnight guest was allowed in the ICU, and now both Mom and Dad can spend the night with the now stable Jedidiah. =))

Jedidiah is now in the Davis Tower, 7th Floor Pediatrics, Room 7789, Bed 1.

And the peace of God which passeth all understanding shall keep your hearts and minds through Christ Jesus. Philippians 4:7

Sunday, February 21, 2010

Jedidiah moved his left arm!!! The surgeon came in and asked to shake Jedidiah’s hand, and then asked Jedidiah to shake with his left hand. Jedidiah was able to do it!! He didn’t even say it wasn’t his. =) Blue Nanny (his grandma, Donnal, as the rest of the world knows her) has been helping Jedidiah move around more. Mom left for Cromberg tonight, has a long To Do list of stuff needing attention at home. Dad and Blue Nanny are staying with Jedidiah tonight. We’re still waiting on the Pathology Lab to know what our next step will be. A meeting with Neurology and Oncology specialist is tentatively planned for Tuesday morning.

I can do all things through Christ which strengthens me. Philippians 4:13

Monday, February 22, 2010

9:30 AM- We should find out the results of the biopsy from the pathology lab today. Dad and Nanny are still with Jedidiah. We’re all getting anxious waiting. Please pray for my Daddy, that he’ll have the strength to carry on.

12:30 PM- Jedidiah has met with his Physical Therapist, Lisa, and Nutritionist, Terra. With Lisa’s help, Jedidiah was able to stand today! Moved his left arm yesterday, stood today- we have progress. =) This is such a relief! When I saw him on Thursday, he couldn’t roll over by himself and now he’s getting back on his feet!…:) Dad has a whole list of exercises to help Jedidiah with later today to help build his strength and flexibility.

8:30 PM- Still no lab results!! Ugh…;/ Should get them tomorrow… please keep praying. In the meantime, Dad sent me tons of pictures to post today. Ha-ha, so there will be lots of new pictures up soon…;)

I lift my eyes unto the hills; where does my help come from? My help comes from the Lord, the maker of heaven and earth. Psalm 121: 1-2

Tuesday, February 23, 2010

3:00 PM- This morning, with the help of his Physical Therapist, Jedidiah got out of bed, WALKED to the chair, sat down while the nurse made his bed, and then walked back to his bed!! When I saw Jedidiah on Thursday, Mom had to roll him over and lift him up for the nurse to change the sheets. We’re all so proud and happy for Jedidiah! =)

Mon left Cromberg at ten to drive back down to Sacramento. Her cell phone is breaking though, so I haven’t heard from her yet.:/ And we are still waiting on the Pathology Lab- I’ll update all of you just as soon as I find out.

5:00 PM- So, it’s looking like there won’t be any news. Again. :/ Doctors said Jedidiah is their first priority. We haven’t gotten results yet because the doctors are still deliberating with each other to determine the best method of treatment. So, we should know tomorrow! In the meantime, Jedidiah keeps getting stronger. Mom is staying with Jedidiah tonight, so Dad and Blue Nanny can go back home.