Tuesday, June 16, 2009

Houston, We Have a Problem



The shuttle never launched and our trip did not end quite the way we expected. After four days of fun at the beach, breathtaking views, and beautiful weather, we found ourselves in the familiar halls of the hospital facing tests and medications.

As I sat there waiting for the doctor, the past four days began to slip away. They were growing more distant by the moment as the memories of them were forcibly replaced by unwanted ones. The unfamiliar was being replaced with the all too familiar. I wanted the unfamiliar back! The unfamiliar hallways of the hotel instead of the familiar hallways of the hospital. The unfamiliar surroundings of our hotel room instead of the familiar surroundings of a hospital room. The unfamiliar sound of the ocean as the waves lapped the shore instead of the familiar sound of a beeping monitor of an IV machine. The unfamiliar faces of strangers in bathing suits instead of the familiar faces of nurses and doctors in white coats. The unfamiliar smells of salt and sand instead of the familiar smells of sterile disinfectants. I earnestly tried to force the memories of the past four days to the front of my mind. As CJ was laying in the hospital bed, he commented to me that he could not believe this was the same day he was swimming in the ocean and playing in the sand, so I suppose he was experiencing similar thoughts and feelings.

It all began when we were getting ready for dinner that evening. It was to be our last night in Ft. Pierce and we planned to head home sometime late the next day. CJ was tired and a little run down but we assumed it was most likely from four continuous and active days spent in the sun. He was resting before dinner. When it was time to get ready he looked a little flushed so I placed my hand on his head and instantly felt how hot he was. And here it was....the moment we have feared and yet somehow kept at bay for the past 9 months. The dreaded fever!

I immediately tried to convince myself it was not a fever and that he was just warm from the afternoon spent in the sun and the afternoon nap he took wrapped in the warm blankets. I told Chris he was hot and as he got out the thermometer I held out the slightest bit of hope that I was wrong. Unfortunately, I wasn't. It read 101.5. CJ's protocol is to immediately be taken to the hospital at a fever of 100.4. We were well past that already! His protocol also called for an admission and minimum 3 day stay when he has a fever. I couldn't imagine this beautiful 4 day vacation ending in a 3 day hospital admission and I did not have the slightest idea how we were going to prepare CJ for it.

Chris called the doctor who said we needed to bring him in. There were no hospitals in the area we felt comfortable taking him to. We knew we were about an hour and a half away from Joe DiMaggio so we made the decision to head home immediately. CJ's spirit was crushed and he was visibly upset. Not so much because we had to leave a day early, but because he knew where we were leaving to.

I got busy packing the bags. While I was packing, I noticed Chris seemed tense and at one point he began saying, "I knew I shouldn't have let him have this or that, I should have made him wash his hands more, I should have been more careful." I felt terrible for the responsibility he always seems to carry on his shoulders and reminded him that this was not in his control. CJ was also very upset and did not want to go to the Emergency Room. As much as I hated for the trip to end this way, I began to feel that we were just meant to go home for some reason and that maybe CJ's fever was God's way of getting us home quickly. I began to believe there was some reason we needed to be home tonight instead of tomorrow. I shared this feeling with CJ and it seemed to help calm him considerably.

After praying over CJ and the drive home, we loaded the car and set out. This was the difficult part because CJ immediately started to worry about what would happen when we got there. I wanted to promise him he wouldn't have to have his port accessed, but I couldn't. I wanted to promise him that if the fever was gone by the time we got there he would not have to stay overnight, but I couldn't. As he asked more and more questions, I wanted to make promises that I knew I had no power to keep. I did not have answers for him. I could not call my family and notify them what was happening because talking in front of CJ would make him more anxious.

Instead, I did what any thinking mother would do...I pulled out the military war book we are reading and began reading the unbelievable details and training of Navy SEAL Marcus Luttrell during Operation Redwing in Afghanistan. The book worked and provided a much needed distraction for all us as well as allowed for the time to pass quickly. It was probably a good thing my face was buried in a book and I could not see the road or how fast Chris was driving. Let's just say that was the first time I ever remember seeing Chris driving with both hands gripping the steering wheel sitting up perfectly straight focusing intently on the road.

We arrived to the ER around 9:30. Thankfully, due to CJ's situation, they immediately took him in. CJ did had to have his port accessed and this proved to be difficult for him as well as for the nurse since she had trouble getting the needle situated in the proper position. This is when my struggle with God begins. It's during the unnecessary things like the missed vein when a child who is already panicking needs to get an IV, the clogged port when a child is already struggling with anxiety over being accessed, or the lost blood work after a child has to be held down screaming for blood to be drawn.

On this night, we experienced the clogged port. As I stood there staring at it and begging God to let it work, I began to think this was too much. I remember feeling like this was not happening. It felt sort of like a dream or like I was somehow not really standing there watching this happen. Wasn't I on the beach watching him ride his boogie board on the waves over and over? How did I get from there to here where I am watching a nurse try to shove a needle in a hole she can't manage to find? I began to ask God if this was really necessary. We are here after all! CJ is doing everything he can to stay calm and get through it and now this! What good can possible come from him having to sit there and go through this? I started to think about the book we are reading to CJ about the Navy Seal and how even the seemingly insignificant parts of his training became vital later on. I hoped that would be true of all the seemingly unnecessary parts of CJ's treatments such as these. After much dialogue between the nurses as well as between me and the Lord, the port finally gave way and allowed for the fluid to flow freely. Personally, I think it was my dialogue that finally prevailed!

Following the port being accessed, CJ's blood was tested and he showed no signs of infection. They injected him with some high dose antibiotics and ran some more tests. We waited to be admitted. Then a little after midnight they realized they had no rooms available upstairs to move him to and announced he would be able to go home under our supervision. You can only imagine our surprise and delight. This was great news for all of us! Our vacation was not going to end with 3 days in the hospital. CJ's spirits were visibly lifted.

As for God using CJ to get us home a full day and night sooner than originally planned..... here is some food for thought......the baby threw up within a few hours of being home and then came down with a high fever that night. Brett became very ill by the next day with high fevers and endless vomiting. Chris also got sick with a painful throat infection. CJ, however, never showed signs of a fever or illness again. But thanks to him, we were able to effectively care for the rest of the family in the comfort of our own home. You decide!
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A few Thank You's are in order to some people who we could never have gotten through this week without:
Thank you to our family that were with us on vacation who made it easy for us to leave in a moments notice when CJ got sick. We love you and are so grateful for the time we got to spend together. Thank you Uncle Shawn for praying with us before we left. It really helped calm us before we set off. Thank you Aunt Heather for handling all the little details I left behind. I love you. Thank you grandma and poppa for the awesome weekend and for "forcing" us to go. They are memories we will treasure forever! Thank you Aunt Cara for your love to our family and for covering us in prayer. As CJ said, "you are the best with kids of anyone he has ever met." I thought that was so sweet.
Thank you Melinda for rescuing us again and again even at a moments notice. We are blessed to have you in our lives. You are a Godsend...literally!
Most importantly, thank you God for blessing us with a wonderful vacation after a long, hard nine months. I will cherish the memories of the kids riding the waves with huge smiles on their faces forever. I will always remember our first sunrise together as a family. Thank you for bringing us home safe, in Your time and for protecting CJ from further infection. Continue to heal our family and restore us to health. In the name of your son, our Savior, Amen

Friday, June 12, 2009

God Loves You More


This picture was taken on Mothers Day, May 10th. I decided to use this one for this post because I am adding a poem CJ wrote me as a gift for Mothers Day. Looking at it, I can not believe that it was taken only one month ago. His hair has grown in so much since then! (see below post taken on June 7th , just one short month later). Wow, God is amazing! But I must admit, I kind of miss his bald head.

We have some Specific prayer requests for CJ:

We are leaving early in the morning for a short weekend trip to Daytona to see some family that will be there, and hopefully, to see the shuttle launch in Cape Canaveral! Please pray for all to go well for CJ on this trip. I say this because this will be the first time we have left home since he got diagnosed and there is comfort in having Joe DiMaggio Children's Hospital available to us here in Miami where they know his specific needs and concerns if we needed anything and are adequately equipped if the need arose. I am not anxious and am resting in the Lord's hands in this regard but any extra prayers available are more than welcome at this time. Also pray we would remember his medications faithfully even with the distraction and disorientation of being on vacation.

We are also asking for specific prayer for God to reveal to us why CJ is limping to the extent that he is. We have had some X-rays done recently and they were negative for any indicators of why. Unfortunately, we take no real comfort in clear x-rays since CJ had three sets of x-rays taken while his body was riddled with cancer and we were always given the 'all clear'!

Today we were told he would be given an MRI to see if there is some necrosis from the steroids. If there is, it would be best to catch it in its beginning stages. If it is not there, I just pray we will get to the bottom of why he is limping. I want to stress that he is in NO pain and that is throwing the doctors off a little. A limp typically indicates an adjustment being made to avoid pain. There is a slight chance this is a habit formed by muscle memory from when he was in pain before diagnosis. In that case I would assume some simple rehabilitation therapy would fix that right up. However, my 'mommy instinct' does not think this is a habit. Mainly because the limp is more prominent now than before he was diagnosed and even more so than the beginning of treatment. It seemed to really pick up and become more noticeable at about the 4-5 month mark in chemotherapy.

On that note, CJ's reaction to hearing he needed an "MRI" was a very sad and disappointed one. Here is some real "muscle memory"! His brain muscle remembers extensively how difficult and devastating the day of the initial MRI that lead to his diagnosis was for him. ( I have already written extensively about "that day" and will post it in the future for all of you to read.) His association with an MRI or even the suggestion of an MRI causes an immediate reaction in him. Sort of like a person would react if attacked by a dog and then faced with confronting a dog, or a person who had a major accident and then had to climb back in behind the wheel and not expect the same result. I had to explain to CJ why he was reacting this way and he seemed to understand. It was so difficult for me because as tempted as I was, I realized I could not make him any promises about what will or won't happen, what we will or won't find on that MRI, what will or won't be the result of it. I wanted to promise him it would all be okay and it was no big deal. But I learned my lesson about making promises I can not keep. I actually titled the post I wrote about that day....."A Day of Broken Promises" because that is what it turned out to be in so many ways.

That said, please pray for the MRI to reveal what is causing the limp. Please pray for the MRI to go smoothly and for his little heart and mind to not be anxious about it. Please pray I will keep my mouth shut and not make any promises I can not be sure I can keep. This time, I will make him ones I know that I can. Or at least, ones that I know Someone else can! "The LORD is faithful to all his promises and loving toward all he has made." ( Psalm 145:13)

Here is the Mothers Day poem CJ wrote:

God Loves You More
by: CJ George

Once, a boy and his mom were walking.
The mom saw some flowers, sighed and said,
"I love the flowers."
"I like them too," said the boy.
They kept walking.

The boy looked up and said, "I love the sun and the sky.
The sun for its heat to keep me warm in the day,
And the sky for its beauty, in every way"
They kept walking.

It soon got dark. The mom noticed the moon and the stars and said,
"I love the moon and the stars, for their beauty too."
They kept walking.

A bird flew over their heads and the boy said,
"I love the animals."
The kept walking.

They were nearing home now and the mom said,
"Do you know who I love very much?"
"Who?" said the boy.
"You, that's who!" said the mom.

As they stepped on the porch the boy said,
"Mom, do you know who loves you more then the sun and the moon and the stars and the sky? And He even loves you more than I love you."
"Who?" the mom replied.
The boy pointed up and said,
"God, that's who!"

By: CJ George
Dedicated to mom on Mothers Day


Sunday, June 7, 2009

Treasured Milestones


Seemingly simple things hold great significance to me now. Not that they were insignificant to me before, but they have begun to take on a new level of significance that resonates from somewhere deep within my heart. They have become small treasures I will cherish forever, like watching CJ walk across a stage to accept a simple promotion certificate graduating him from one grade level to the next.

Tonight we attended our annual promotion ceremony that promotes our children to the next grade level. CJ has officially completed the 4th grade and will enter 5th grade in the fall. He walked across the stage to receive his certificate and be recognized for his character growth this year in the areas of faith and trust. As he received his award, I wondered if he had any clue as to the profound accomplishment this was. Not only did he receive a devastating diagnosis just 6 weeks into the school year, spend close to three weeks in the hospital, have 9 months of chemotherapy that he is continuing to receive, but he also completed all his assignments successfully and faithfully, on time.

As I watched him on the stage, I realized how distant this day seemed back in September when he was first diagnosed. Not only distant, but unthinkable. I remember pushing these and other treasured milestones out of my mind in fear of never reaching them. They were simply too painful to hope for at the time. When I allowed myself to think about milestones like Christmas, his 10th birthday, or graduating from 4th grade, there was a despair of distance and the unknown that tempted to drown me.

I remember early in CJ's treatment a good friend, who is also a cancer survivor, told me not to drown in the demands of the day and not to despair by thinking too far ahead. She said to focus on a short distance goal that was attainable and realistic. It gave us something to look forward to without the fear of never making it there looming over us.

See, you can not really take it "one day at a time" when you are battling cancer because that day is sometimes overwhelming in itself. If you have chemo, spinal taps, tests, and shots all day and that day is all you focus on.....well, it isn't very helpful. You also can not look too far ahead because those days are clouded in the unknown. However, if you look ahead to a short distance goal even as simple as 'tomorrow we will make pizza for dinner' or 'on Friday we will watch a family movie' or 'on Saturday we will see grandma', it is extremely helpful. During difficult days at the hospital I often reminded CJ of these simple but immediate goals we could reach and it helped us get through that day without drowning in it. Still, I did not dare let my heart wish for those far off milestones that I really treasured like Holidays together, his birthday, or CJ graduating 4th grade.

Before long, the larger goals like celebrating another Christmas together, celebrating New Years together, celebrating CJ's 10th birthday, or watching him graduate from 4th grade came into view. They became the attainable, reachable goals I could focus on. I could dare to look forward to them and plan for them n hope and without fear. Each time we reached one, I experienced feelings of relief mixed with extreme gratefulness. I treasured each milestone deep in my heart knowing they were a precious gift.

Tonight was no different. As he walked across the stage I determined to engrave the memories on my heart and mind. I watched every step he took, every limp across the stage, the expressions on his face, how he listened carefully as pastor read the character quality that he grew the most in this year. I felt that same mix of relief and gratefulness wash over me. I thanked God for this seemingly small yet vastly significant milestone in his life. There was actually a moment when I was overcome with emotions and I wanted to stand up and shout to all the families that were present how special this moment was and that they were witnessing something extremely significant. But I knew its significance was something I could never express. So instead, like the verse in Luke 2 that says, "Mary treasured up all these things and pondered them in her heart," I too am treasuring these milestones and memories in my heart as I ponder the goodness of God and His mercy and love that endures.
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CJ,
We are so proud of you! I wish we could adequately express how amazing what you have accomplished this year truly is. Amidst very difficult circumstances you diligently finished your assignments, and finished well! And through it all you have trusted God and allowed Him to increase your faith!
We love you,
Mom and Dad.


Another treasured milestone I wanted to share with you that had a major impact on my heart was this week when CJ shared at our family home group meeting that he could see how God used a bad situation for good in his life through his cancer. He specifically mentioned some good things that came out of his trial. These were good things in others lives he was thankful for, not his own. This was the first time I heard him say it openly and really believed he understood how, "In all things (even suffering) God works for the good of those who love him and have been called according to his purpose." (Romans 8:28) Needless to say, that one made it into the treasure box of my heart.


Brett,
Mommy and Daddy are so proud of you. You completed Kindergarten and worked very hard all year on your school work. You are growing in obedience and compassion for others. You are kind and thoughtful and such a loving big brother. We are thankful for your tender heart and beautiful smile and endless energy. Your prayers are like a fragrant offering to God and a sweet, sweet sound in our ears. Keep praying! Remember, a real warrior fights on his knees! Congratulations on completing Kindergarten!

We Love You,
Mommy and Daddy




Alibrandi,
Beautiful girl. You really 'broke the mold' in our lives. You are an amazing daughter, a loyal friend, a godly young woman, and a faithful servant. I have never met anyone more steadfast, discreet, loyal, or honest as you. You inspire me. Thank you for all you have done this year to help us with Corey during a difficult time. Thank you for all you have sacrificed for the good of your brother's health and ongoing care. Never once have I heard you complain, argue, or disrespect me or your father. There are no words for what we see God doing in your life. Follow him closely and faithfully. And remember, we walk by faith, not by sight. Congratulations on completing 7th grade!
We love you,
Mommy and Daddy