Many of my readers were with me all along Joey's journey through my entries on Caring Bridge. This week, I am going to share some of those entries.
If you are a new reader or unfamiliar with his story, you can start here to read about how it all began. Below are two entries from the first weeks after his diagnosis:
Written Apr 25, 2009 7:20am
Cheetos Are Better Than Astronauts
I have been fortunate to spend the last two days and nights with Joey. Daddy and his brothers all have a stomach virus, so they have been told to STAY AWAY. Yesterday was a day of some small highs and lows for Joey. We both were well-rested. The nurses said I could crawl into bed with Joey - that was all we both needed to hear, and Joey asked me to sleep with him. I gladly obliged.
He was awake and alert much of the day, taking only two naps. In his waking hours, we read a lot of books, tried to play a memory game, and completed some activities from some coloring books. He continuously asked when we were going home. His first big low came when Dr. Puccione answered that question with a flat, "Sometime next week." I couldn't control my own emotions as I looked in Joey's crestfallen face. I had to step out of the room a few times.
All of the tubes and wires are bothering Joey, too. He was wanting to move around more and sit up and play. He was tugging at things, and the EVD tube that is draining the cerebral spinal fluid (CSF) around his tumor was leaking on him. He was complaining that his IV line was hurting him, so they determined it had to be changed, for the third time (of course, the first time, he pulled it out himself).
A high point came when he found out he could have Cheetos for lunch - ahhh, normalcy. He has only been eating about two bites at each meal. Because of the location of one of the incisions from the biopsy, it hurts to chew.
But he did a great job with those Cheetos, and I saw a real
smile for the first time!
During lunch, Joey had a visitor. US astronaut and Nebraska native Clayon Anderson was on the floor visiting the patients! He breezed in like a slick politician and handed Joey a glossy photo. Joey said hello, but went right on with his Cheeto eating.
"I think right now, the Cheetos are more exciting to him," I said to Mr. Anderson.
Mr. Anderson did not look amused.
We took a picture with him and Joey, and it was actually a really cool experience that Joey will appreciate someday...but he really needed those Cheetos today!
A couple more of Joey's high points included the fact that he figured out how to work the controls on his bed. He has been happily adjusting it up and down. This is to the chagrin of his nurses, who have to reposition the level of his EVD drain every time he changes his level.
We also learned that we would be moving up to fifth floor to a more "comfortable" room (is that possible?). The nurses told Joey he could take a ride in a wheelchair, that it would be like a car he could drive. They also described to him the elaborate toy room on the fifth floor. I have not seen such a change in a boy. He was so excited. He was up on his knees in his bed making car noises and saying, "Let's go!" Once, he even tried to crawl out of bed.
He was bound and determined to push the wheelchair himself. I think the nurse could have let go, and he would have made it to fifth floor independently. We got settled into our new room, when the nurse came with bad news. She pulled me into the hallway.
"He's not allowed to go to the playroom." She had a big 'I"m so sorry' look on her face. His doctor was afraid the EVD tube might become dislodged with all the movement and couldn't risk it.
"You're telling him!" I demanded. I couldn't break his heart like that.
When she told him, he didn't say anything, just nodded. She brought some toys, books, and videos from the playroom, which he half-heartedly looked at.
When it was time for his nightly meds to be pushed, he cried and complained of pain. He was ready to go to sleep by 7:00 pm. He wanted me to lay with him again.
I began to sing to him the song that I had so often sung when he was a baby in the NICU. My version:
"You are my sweetface, Mommy's little sweetface, you make me happy when skies are gray, you'll always know, Joey, how much I love you..."
I got a lump in my throat as I struggled to sing the last line:
"please don't take my sweetface away.""Daddy sings that song to me sometimes," Joey whispered. Then, "I just want to go home." And I saw him spill the first real tears of frustration and sadness.
I wiped my own tears and went into Mom-mode. We closed our eyes and imagined that we were at the beach. We built sand castles and collected seashells, dipped our toes into the ocean. Soon Joey was breathing deeply, asleep at last.
I guess moms rank above astronauts, too, right up there with Cheetos!
He was awake and alert much of the day, taking only two naps. In his waking hours, we read a lot of books, tried to play a memory game, and completed some activities from some coloring books. He continuously asked when we were going home. His first big low came when Dr. Puccione answered that question with a flat, "Sometime next week." I couldn't control my own emotions as I looked in Joey's crestfallen face. I had to step out of the room a few times.
All of the tubes and wires are bothering Joey, too. He was wanting to move around more and sit up and play. He was tugging at things, and the EVD tube that is draining the cerebral spinal fluid (CSF) around his tumor was leaking on him. He was complaining that his IV line was hurting him, so they determined it had to be changed, for the third time (of course, the first time, he pulled it out himself).
A high point came when he found out he could have Cheetos for lunch - ahhh, normalcy. He has only been eating about two bites at each meal. Because of the location of one of the incisions from the biopsy, it hurts to chew.
But he did a great job with those Cheetos, and I saw a real
smile for the first time!
During lunch, Joey had a visitor. US astronaut and Nebraska native Clayon Anderson was on the floor visiting the patients! He breezed in like a slick politician and handed Joey a glossy photo. Joey said hello, but went right on with his Cheeto eating.
"I think right now, the Cheetos are more exciting to him," I said to Mr. Anderson.
Mr. Anderson did not look amused.
We took a picture with him and Joey, and it was actually a really cool experience that Joey will appreciate someday...but he really needed those Cheetos today!
A couple more of Joey's high points included the fact that he figured out how to work the controls on his bed. He has been happily adjusting it up and down. This is to the chagrin of his nurses, who have to reposition the level of his EVD drain every time he changes his level.
We also learned that we would be moving up to fifth floor to a more "comfortable" room (is that possible?). The nurses told Joey he could take a ride in a wheelchair, that it would be like a car he could drive. They also described to him the elaborate toy room on the fifth floor. I have not seen such a change in a boy. He was so excited. He was up on his knees in his bed making car noises and saying, "Let's go!" Once, he even tried to crawl out of bed.
He was bound and determined to push the wheelchair himself. I think the nurse could have let go, and he would have made it to fifth floor independently. We got settled into our new room, when the nurse came with bad news. She pulled me into the hallway.
"He's not allowed to go to the playroom." She had a big 'I"m so sorry' look on her face. His doctor was afraid the EVD tube might become dislodged with all the movement and couldn't risk it.
"You're telling him!" I demanded. I couldn't break his heart like that.
When she told him, he didn't say anything, just nodded. She brought some toys, books, and videos from the playroom, which he half-heartedly looked at.
When it was time for his nightly meds to be pushed, he cried and complained of pain. He was ready to go to sleep by 7:00 pm. He wanted me to lay with him again.
I began to sing to him the song that I had so often sung when he was a baby in the NICU. My version:
"You are my sweetface, Mommy's little sweetface, you make me happy when skies are gray, you'll always know, Joey, how much I love you..."
I got a lump in my throat as I struggled to sing the last line:
"please don't take my sweetface away.""Daddy sings that song to me sometimes," Joey whispered. Then, "I just want to go home." And I saw him spill the first real tears of frustration and sadness.
I wiped my own tears and went into Mom-mode. We closed our eyes and imagined that we were at the beach. We built sand castles and collected seashells, dipped our toes into the ocean. Soon Joey was breathing deeply, asleep at last.
I guess moms rank above astronauts, too, right up there with Cheetos!
Written Apr 30, 2009 10:39pm
The Green Mile
Today, we are back to our routine life - waking up, eating breakfast, playing, eating lunch, taking boys to preschool, the bustle of dinner and bedtime...
Crying has become routine, too.
Crying has become routine, too.
Every time I go into a room by myself...
Every time I see or talk to someone...
Every time I read a note written by someone in shock...
Every time Rick and I are alone together...
I thought I could hold it together long enough to attend Adam's preschool chapel time. I sat there for fifteen minutes and was fine. Then two moms walked up to me with tears in their eyes...
Joey has eaten well at home, he has played trains, read books, even played outside for a little bit.
But he is different - he has already changed. I can't explain all the ways...
What has not changed about him is how sweet and loving he is with his brothers, how he wants to keep busy, how helpful he is, how he wanted to try every single ice cream topping that was brought to us with dinner by a generous family.
Physically, he is still slow and weak. He cannot control his shivering. The tumor is near his thalamus, which is a gland that, in part, helps regulate body temperature.
We are planning that picnic. I marvel at the springtime beauty as I see grass becoming so green, trees that are sprouting white, pink, and purple blooms, and flowers - so many colors and varieties.
But, I notice with new eyes, the flowers that didn't bloom, the random bush that is still brown, the trees that do not have any leaves yet...even in our own front yard.
As I drove in my mile radius to and from the two preschools today, I remembered a movie Rick and I saw about ten years ago called "The Green Mile" with Tom Hanks. It was about a prison guard who had a prisoner in his charge who was rumored to be able to create a miracle. The warden, whose wife was dying from a brain tumor, brought the man to her. She was touched and cured.
I'm sitting here praying for our own green mile...
Every time Rick and I are alone together...
I thought I could hold it together long enough to attend Adam's preschool chapel time. I sat there for fifteen minutes and was fine. Then two moms walked up to me with tears in their eyes...
Joey has eaten well at home, he has played trains, read books, even played outside for a little bit.
But he is different - he has already changed. I can't explain all the ways...
What has not changed about him is how sweet and loving he is with his brothers, how he wants to keep busy, how helpful he is, how he wanted to try every single ice cream topping that was brought to us with dinner by a generous family.
Physically, he is still slow and weak. He cannot control his shivering. The tumor is near his thalamus, which is a gland that, in part, helps regulate body temperature.
We are planning that picnic. I marvel at the springtime beauty as I see grass becoming so green, trees that are sprouting white, pink, and purple blooms, and flowers - so many colors and varieties.
But, I notice with new eyes, the flowers that didn't bloom, the random bush that is still brown, the trees that do not have any leaves yet...even in our own front yard.
As I drove in my mile radius to and from the two preschools today, I remembered a movie Rick and I saw about ten years ago called "The Green Mile" with Tom Hanks. It was about a prison guard who had a prisoner in his charge who was rumored to be able to create a miracle. The warden, whose wife was dying from a brain tumor, brought the man to her. She was touched and cured.
I'm sitting here praying for our own green mile...
