Especially in an MRI Machine!

CJ had the MRI on Saturday to try to determine why he has been limping. This was difficult for him because it was an MRI, on September 12, 2008, that lead to his diagnosis and changed the course of his life forever. On that day, what should have been 45 minutes became four hours, two MRI machines, and dye injections before being transported to Joe DiMaggio for an unexpected 17 day stay. I think that day was fresh in CJ's mind as we made our way to the hospital Saturday morning.

CJ's greatest fear however, was the injection of the contrast they use in order to obtain clear pictures. He remembered that the last time he had it, he immediately got physically ill and began to throw up. He anticipated this happening again and was highly anxious about it.

For Chris and I, the fear was more related to what they would find. Although it was not what they were looking for, we knew that if there was any sign of new disease in the area of the pictures being taken, they would see it. We knew there was a possibility we could soon be hearing that dreaded 'R' word all parents who have children with cancer fear.......Relapse.

Unlike the original MRI where Chris and I were able to go in together and be there for CJ and each other, this time, God ordained it that only one of us could go in. I assumed He was not only teaching us individual lessons but protecting us as well. I made that assumption when I was in the room with CJ during the MRI and I saw how eerily similar, or 'exact' to be more precise, the room that I was in was to the one on that unforgettable September day. I knew being in there would have been extremely difficult for Chris. Every detail was the same. Every sound was the same. The smell was the same. The instructions were the same. I could only trust and hope that the outcome would not be the same.

Seeing CJ lying in that machine was more overwhelming than I expected. I knew I had to pass the time in a positive way so I began to pray and recite scripture. I did not have a Bible with me so I was going over the verses in my head. Since I was also distracted thinking about CJ, I would repeatedly get lost and have to start all over. I came up with a really interesting version of the book of James in that first hour. Let me just pause here and say, there is no better way to pass time than reciting scripture. It is just like reading in that time flies by when you are doing it. If you have something that is difficult to get through, whether it be doctors appointments, dental appointments, exercising, walking on your treadmill, or getting through a Sunday Sermon (just kidding on that last one) try reciting memory verses! It will be over before you know it and you will have a renewed mind and spirit to boot!

Even though I knew that CJ could not hear me over the overpowering sounds of the MRI machine and I could barely hear myself, I knew the power of God's word was there regardless. I did start to wonder at one point how I must look to the technicians on the other side of the one way glass. For those of you who don't know me personally, I am quite expressive and every now and then I realized I was adding facial expression to my verses. Once I got that under control, by turning my back to the window, time began to pass more quickly. At least for me! CJ, on the other hand, fell asleep. He woke up at one point very confused as to where he was. He began shaking. I stood up to grab his hand to calm him and thankfully he did not try to sit up while still in the machine.

Reaching the end of the first hour, he was pulled out to inject the contrast into his vein. He immediately became upset. He was hot and sweating by now from being in one position for so long. He was afraid it would make him sick. He began to cry. I tried to talk to him and calm him but he was scared. I reminded him of the verse he recently memorized for the National Bible Bee, "Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go." Awesome and timely verse in Joshua 1:9.

I said, "CJ, that is a promise from God that He will be with you even in an MRI machine."
And to our surprise, the nurse who was preparing him for the injection suddenly said, "Especially in an MRI machine!"

After this, CJ was calm and able to receive the injection, control his nausea, and complete the remainder of the MRI. Forty five minutes later, we were done and found Chris pacing the hallways and happy to see us. I know he had his own lessons and conversations with the Lord to pass the time during his wait.

To our great joy and relief, we walked out of the hospital that day of our own accord. No sudden surprises or emergency hospital admissions. Since then, we have learned that the MRI was negative for necrosis, fractures, or any sign of new disease! Praise God from whom all blessings flow! This is wonderful news and we are very grateful.

However, although we rejoice in the results, we are still at a loss as to why CJ is limping. To be perfectly honest, this leaves me a little frustrated and reminiscent of those early days when I would take CJ to the ER to be told nothing is wrong and would then go home happy that nothing was wrong, yet still confused.

The MRI results will be looked over by some of CJ's other doctors but at this point we don't expect it to show anything that indicates why he limps. The next possibility is that it is a result of muscle memory from the times he was in pain. This is not unlike a person who has a severe fracture in one leg, is casted for a long period of time, and after complete healing, still walks with a limp or favors one leg out of habit. That assumed, I would believe and hope that physical therapy would be available to him so that it can be corrected.

CJ is also recovering from this whopper of a cold that went through our family. Thankfully, we were able to monitor him at home, control his temperature, keep him hydrated, and avoid a another hospital visit. Thank you for your prayers.

CJ and I will go in tomorrow morning (Thursday) to get his blood counts done and review the MRI results in detail with the doctors. He has a list of questions he plans to ask the doctors. I believe they all consist of when can he do this or that. Please pray he gets some of the answers he is hoping for.

Thank you again for your prayers covering CJ and our family. As we stay the course, we are grateful for all who have stayed the course with us. We have learned huge lessons these past few months and pray that the lessons will stay with us and bring lasting and effective change.

"May the Lord direct your hearts into God's love and Christ's perseverance. "
(2 Thessalonians 3:5)

I must close this post with the confession that it is extremely difficult to post this positive news for our family when we know that so many other families are not receiving the news they hoped and prayed for. I have learned that many families who write about their journey through cancer, struggle with sharing their good news as they watch other families face heartbreaking test results, relapses, and completion of treatment with the disease still present. Instead, they secretly rejoice while those around them suffer. We understand the hesitation as right now our hearts and aching for the Villalona family who took their little princess Amanda home on hospice. Amanda, as you may remember, is the little angel we met at the hospital that I shared with you about it an older post titled Brave Love Little Amanda is, like CJ, the child of a police officer.

We are grieving with them as we balance Romans 12:15 to "Rejoice with those who rejoice; mourn with those who mourn." We take comfort in the fact that they are secure in the Lord Jesus Christ and although they are grieving, they will not grieve like those with no hope, but rather like those who rest assuredly in the hope of Jesus Christ who will gather all those that belong to Him to Himself. Regardless of the outcome, Princess Amanda will be cancer free! Our prayers are with you Princess Amanda




"Then little children were brought to Jesus for him to place his hands on them and pray for them......Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these."
(Matthew 19:13-14)




URGENT UPDATE: We were just notified and are sad to announce that Amanda has passed away. We were checking her site daily and yet it always opened to the older post so we had not realized she has already gone to be with the Lord. We were told today that she passed away the same day I posted the above post. This is from the families website: "I wish to inform you that our Princess Amanda earned her angel wings early this morning, 6/30 at 1:47a.m."

We are saddened by the news. I am personally fighting my flesh and forcing it to keep in step with what my spirit knows to be true. My heart is aching for this family. I did not expect this news to be so difficult but Amanda is the first child we have had to say goodbye to since we began this journey. May the God of all comfort draw near to this family and fulfill His promise that "The Lord is close to the brokenhearted." (Psalm 34:18)


We also miss and constantly remember CJ's friend Jia who left for North Caroliona back in January for a bone marrow transplant. He still has not returned due to endless complications. We love you little man and we can't wait to see you again. Keep fighting and take good care of your mom!

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

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

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

Hope Springs Up

Early in CJ's treatment a sweet woman heard about our story and sent CJ a beautiful canvas she painted called "Hope Springs Up". It is a picture of a bluebird staring up at a tall, lone sunflower that has seemingly bloomed randomly amidst the high mountain passes and low valleys bluebird is traveling. The title of the painting describes perfectly the feelings I experience when looking at it. I can relate to the little bluebird navigating the mountains and valleys that lay before him and needing some hope to spring up as a reminder of God's hand guiding the way. I can relate to the little blue bird who purposefully focused his gaze on that hope instead of the mountains and valleys that surround him.

That painting hangs on my wall and serves as a reminder of the hope God has allowed to spring up for us during these past eight months of CJ's treatments. Through His word, through many of you, through the blog, and through His promises God has provided many doses of hope that have refreshed us in the valleys. Recently however, I found myself looking at this painting and praying, "Lord, like bluebird, I really could use some hope to spring up. Anything will do! Even just a sprout or sapling shooting up would be a welcome sight."

I was in desperate need of a fresh dose of hope. I had read some articles related to CJ's treatments that weighed heavy on my heart and mind. I was grieving for a woman that I have never even met who is dying of cancer. I was walking my daughter through a difficult time and as a mom I was suffering tenfold for every tear she shed. I was having difficulty discerning my heart and thoughts. In the midst of it all, I was struggling to communicate my feelings to Chris and therefore was not receiving the comfort I was in need of and that God has provided for me through him. Let's just say, I was a mess!

Like a drug addict, I begged God for a fix. Each morning I poured my aching heart out to Him, I felt desperate. I begged him for a shot of hope. I pleaded with him through prayer, through my journal, through tears, and even through gritted teeth. As the week wore on I began to think it wasn't coming and the temptation to go to other sources for a "fix" was great. (This would be my temptation to let my heart and mind wander from the truth and promises of God and throw a pity party.)

When hope finally came later in the week, it came in the most surprising form. Or should I say form(s). Hope was delivered straight to my heart through a blond, a brunette, and a redhead. Sounds like the beginning of a joke, right? "How can a blond, brunette and redhead bring hope to a downcast spirit?" Don't worry all you blonds, this is not your typical blond joke! The blond in this story is not the but of the joke here. Rather, she is the very reason the hope was delivered to my parched soul.

The seeds of this hope were planted back in January when she, the blond, who from here on out will be known as Kristi, heard about CJ through his grandma Paula. Kristi's spirit was immediately and powerfully affected. Upon hearing about CJ, Kristi went home and penned a song for him. She titled it "Angels Without Wings" because she felt that was what CJ was to her. Mind you, she still did not even know his name yet, only his story. Still, the song poured out of her. She sent the words to him with a beautiful journal.

At this time we were only three months into CJ diagnosis and treatment and still amazed at how God was moving so many hearts and spirits of His people to intercede for CJ through prayer. Some of the most powerful and faithful intercessors had never even met him before. Kristi was one of them. We kept in touch through email, through the blog, and through grandma.

Five months passed and during this time it became Kristi's passion and dream to see this song recorded for CJ. Enter the brunette, from here on out known as Sam. Sam is Kristi's piano teacher. He wrote the music/melody to go with the song and began to compose it with her. (sorry if I am mutilating the proper musician terminology) Kristi also began looking for someone to sing it. She went through a few different voices but was unable to achieve the sound and level of professionalism she was looking for. Enter the redhead, from here on out known as Amber Leigh.

Amber Leigh is an accomplished and professional singer who Kristi had heard about before. Sam contacted Amber by email and shared the story with her and asked if she would consider singing the song. Amber agreed. As a professional, she has a very busy schedule and setting up a time with the recording studio available, her available, as well as Sam the composer was tricky.

In God's perfect providence, the timing of this recording would not happen until the end of a very difficult week for me, as mentioned above. We were invited to the recording studio on Thursday for CJ to hear the song and finally meet all these people who have given their time, talents and treasures to bless a little boy they never met. It was just the fix I needed. Who would have thought God would use three complete strangers to open my eyes to His constant love and care for me and for CJ. As I sat there watching them work on the song, discuss different aspects of it, and consider each others perspectives openly and freely, it gave me a fresh dose of hope. How did I walk in there so downcast and heavy laden and walk out feeling so free of the burdens I was carrying? I don't know. Only God knows. Maybe it was when I looked at CJ and realized that his suffering is what God is using to do all of this in the hearts of people. Maybe it was when I realized the next day I would be sitting next to CJ as he had to have chemo, but for that moment it was the farthest thing from his mind. Maybe it was when I heard Amber Leigh say she had lessons that afternoon and she had a performance that night, or when Sam said he had a class at 1pm he needed to get to when they finished, or when I realized Kristi's 3 year old twins were at home with dad while she was here serving my son. It affected me to realize these people have busy lives, commitments, and schedules and yet here they all were giving their time with no expectations. It wasn't because of something I could see but something that was unseen, yet there in that room nonetheless. And my heart received it.

Yes, hope crept in my heart that day. And I have guarded it carefully ever since. I thanked God for that glimmer of hope during a difficult week. No, the difficulties did not end. CJ still had chemo the next day, the woman I mentioned is still dying, the articles I read are still fresh in my mind, I am still having trouble communicating........so what has changed? My heart and my hope! I am no longer focusing only on those things. They are with me, yes. But they are momentary and light when compared to the surpassing greatness of knowing Christ Jesus, my Lord and being privileged to watch Him work in and through the hearts of men....or should I say, a blond, a brunette and a redhead.

CJ with Sam, Amber and Kristi.

I may be... "hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed....." "....But as for me, I watch in hope for the LORD, I wait for God my Savior; my God will hear me."
(2Cor 4:8)(Micah 7:7)

"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit."
(Romans 15:13)

_______________________________

Check out Amber Leigh's website. www.amberleigh.com

We're all going to get together and go watch one of her shows and you locals are all invited. It will be a blast and a great way for us to support her for what she has done for CJ. She plays at Boston's on the Beach from 2-5pm, Saturday May 30th, Saturday June 6, and Saturday June 20th. I will post the details once we know what show we are going to. I will also keep you posted as to the progress of the song! Kristi has big dreams for it and I just happen to believe God does too.

_____________________________________________________________

CJ did have chemo Friday and it went surprisingly well. He was a little nervous on Thursday but came to me late that night. He had been laying with his daddy and he was heading to his own room and said, "Mom, I have been nervous about my port being accessed tomorrow but I have been praying and reminding myself I can do all things through Christ, and it is helping me." Needless to say that gave me hope for the next day! And that hope did not disappoint. He did awesome! We worked on scripture memory the whole way there and by the time we got there he had 3 new verses, five total by the time we got home. He surprised himself what he can do when he sets his mind to it. One of the verses he memorized is Joshua 1:9..."Have I not commanded you? Do not be terrified, do not be discouraged. For the Lord your God will be with you wherever you go." You better believe that comes in handy when you are about to have a needle inserted into your chest.

He squeezed my hand hard when they accessed him but was focused and cooperative. I told him to go over his memory verses. He was really excited when the nurse told him, "We won't even tape it down, we will just do the push of meds and de-access you." He was all smiles after that. Big secret.....CJ's not afraid of the needle so much, what he hates is the tape on his chest when it is accessed. I know, crazy right! All the kids there hate the tape. I keep saying we are going to invent something to replace the tape and save all the kids in the future the hassle of the tape. The kids actually have panic attacks over the tape more times than the needle.

His counts were good and the doctors decided to try to go back up to a 100% dose again. So we are increasing his meds and seeing how he does. Keep praying for his little body to be strong.

Chris and I will be spending part of Tuesday afternoon on a phone conference lead by a doctor with the Leukemia and Lymphoma Society on the topic of "Childhood Cancer Survivorship: Challenges, Strategies and Resources." Please pray we will learn all that we can and that we will have discernment and yet not become burdened by a yoke of fear or worry. (See followup to this in the blog comments)

Thank you again for your prayers, love and support of our family!

This post is dedicated to Kristi Huddleston.
Thank you for inspiring me to see beyond myself. You really are the angel without wings.
Love, Dawn

To see more beautiful bluebird paintings visit:


http://goodthoughts.typepad.com/photos/bluebird_paintings/index.html.
( or )
http://www.goodthoughts.typepad.com/

The Survivors Lap

Survivors Lap

Do you notice a survivor missing from that line up in the purple shirts? That would be CJ. The Relay for Life was more difficult for him than we expected it to be. He was unwilling to wear his purple shirt, would not go to the stage to his medal, and did not walk in the survivor lap pictured above. The more I tried to encourage him to participate and the more I tried to explain what would take place, the more he backed away and shut down.

This may be my fault as I did not realize that he would be asked to do those things so I did not prepare him very well. Still, it was surprising that he was so closed to the idea of going forward to receive a medal. He could not explain why. I told him I really wanted to understand why he was struggling so much. I asked him to share his feeling with me and to help me understand but he told me that I can't understand what he is feeling and backed away from me. I told him I really wanted to try and he said, "I don't want you to understand." (Enter the knife into the mother's heart!)

As a result of this unexpected reaction, we participated 'anonymously'. No one there, other than our friends and family, knew he was a survivor or knew the battle we faced these past eight months. There was an odd, aching feeling in my chest as I watched the survivors receive their medals and take the victory lap all unified in their stand against cancer. I had to hold back tears. I was happy for them and felt I knew a little of their experience. But I also felt CJ was missing in that lineup.

As I stood there feeling all alone in my pain, I continued to tell myself that I was not anonymous to God. He knows what I am feeling. He understands, and more importantly, He cares. He understands why I needed to be a part of this and He understands why, for some reason, I was not going to be a part of it in the way I had hoped.

I wondered why it mattered to me whether he walk in the survivors lap or not. I know most people would say, "It does not matter if CJ participated in those things," and in some ways I agree. I wondered if I wanted it more for me or for him. I believe I wanted these things for him. I wanted CJ to grasp just how blessed he is to be among the survivors. I wanted him to be proud of how well he fought and to encourage others to fight. I was painfully aware throughout the night that I could just as easily be at this walk standing over a candle lit bag 'in memory of' instead of 'in honor of' CJ. I knew his story was powerful and I believed it would affect and encourage a great many people there. But it was not to be.

The evening continued and at sundown a prayer was said and we lit the sandbags. As I reached in and lit his bag, I struggled again with my emotions. As I made my laps around the candle lit bags, I felt like no one understood what I was feeling. Then suddenly, I realized that is exactly how CJ was feeling; alone in his struggle, like no one understands or even can understand. I found it strange that we were both struggling with the same thing and yet it manifested so differently and we were unable to comfort and understand each other.

He found comfort and safety in hanging with his friends and tossing the football and keeping his heart distance from the event. I found comfort in drawing close to the event and taking in my surroundings and realizing I am a part of something I never would have dreamed I would be. Yet I am, so I want to experience it to it's fullest. I wanted to talk to the survivors. I wanted to talk with their mothers. I wanted to share CJ's story. I wanted to purchase bags for all of the cancer patients we had met at the hospital. I wanted to tell all those who thought this had nothing to do with them, like I did last year, that it could and it does! However, I did none of those things. I only felt them.

I took in the events of the evening and worried about CJ. I kept looking over at him as he played with his friends and wondered how this would all turn out. Would he ever want to be a part of these type of events as a cancer survivor? Would he turn his back on it once it was behind him? Would I be able to let this be a brief period of our lives that lives in the distant past and grows fainter and fainter with time, if that is what he chooses? Would I be able to influence him either way? Would I ever be able to understand the way he wants me to and would he ever be able to understand the way I want him to? I wondered and worried about all of this.

Then, at one point, CJ suddenly did draw close the event. He came up to me right before the bags were lit and asked if there was still time to purchase bags. He wanted to buy one for his Aunt Penny who has been an encouragement to him throughout this struggle and is also a cancer survivor. I told him yes and took him to the table where they sold them. He picked out a bag, added the label with his aunts name on it, and watched as the girl filled it with sand and handed him a candle. Then he placed the bag next to his. As I knelt there beside my son and looked at the bags I thanked God for this one brief moment that we could share in this event together even if it was not how I had planned.

The next day after the Relay I woke up full of regret for the things I did not do at the walk. For not sharing CJ's story even if he himself did not want to. For not planning better, for not preparing CJ more, for not expecting less. I had regrets for the bags I did not purchase that I should have. Regrets for not understanding more and trying to be understood more.

Before I was completely crushed with all the regrets flooding my mind, I dragged myself out of bed and decided to dump all my regrets off of my chest and into God's lap, along with a few tears. It was a lot lighter load to carry that day. And when a new regret popped up throughout the day, I went straight back to the dumping grounds and unloaded it.

After having the load removed from my view, I was able to see more clearly. My focus slowly shifted from the clouds of regret to a ray of hope. I realized CJ may not have worn the purple shirt or walked in the survivors lap at the Relay for Life. He may never walk in a survivors lap. That is his choice I suppose no matter how differently I may feel about it. He can avoid it if he is not ready for it and I can learn to respect that. However, there is one survivors lap he will walk and a robe he will wear that matters more than any purple shirt or candle lit path in this life. It will be that final lap on the narrow road that leads to the gates of Heaven.

That is the survivors lap that really counts.

"Blessed are those who wash their robes, that they may have the right to the tree of life
and may go through the gates into the city."
(Rev. 22:14)

___________________________________________________________________

CJ is doing really well. He had a great week last week and was excited to not have to go in for counts on Friday. That was a real treat! Instead, he was able to participate in a really exciting field day with all of his friends from the PE class he has been unable to attend this year. He also got to attend a picnic on Saturday with his friends from church. He has been spending lots of time riding his new bike and scooter outside and even practicing jumping his ramp and learning new tricks. He is doing really well in taking his medications at home and never complains about them. He has been steadfast with his devotions and bible reading and seems to be growing a lot in this spiritual discipline.
Our prayer requests at this time are for his continued healing and protection from any long term effects from the medications. And that God would help our family to understand each other in a way we have been unable to do so as of now.

Thank you for staying the course with our family and continuing to pray. Although we seem to have come through the most physical challenges this trial has dealt us, we now sense the most emotional and spiritual challenges being the hardest to contend with. I used to wonder how families split apart after walking through such serious trials together. I thought it could only strengthen them and draw them closer together. But the enemy stalks and knows when to pounce. There is much more to say on this but for now I just beg you to continue in pray for our family to have wisdom and strength to stand against the enemy.

"Finally, be strong in the Lord and in his mighty power. Put on the full armor of God so that you can take your stand against the devil's schemes.
For our struggle is not against flesh and blood, but against the rulers,
against the authorities, against the powers of this dark world
and against the spiritual forces of evil in the heavenly realms."
(Ephesians 6:10-12)

Little Did I Know

Last year around this time, I took the kids to a function my church was attending. Little did I know at the time the significance that simple event would come to have on our lives.

Our church was promoting an event they participated in annually. We were encouraged to attend to support our community, our church, and to use it as an outreach and offer prayer to anyone who may be in need at the event. I am not sure if that is why I actually went. I remember distinctly debating whether or not to go. Chris wanted to stay home and work on a project, the kids wanted to see their friends who would be there, and to be perfectly honest I wanted to see mine. So while dad worked on his project, off we went. I did not ponder the depths of the event deeply nor did I consider the range of emotions that many people at the event may have been experiencing. Little did I know I would soon become one of those people who I never took the time to consider.

The event was the annual Relay for Life Cancer walk. These walks take place all over the nation annually to raise awareness and support for cancer research and survival. I had never attended a cancer walk or event prior to this night so this was my first exposure to something like this. It wasn't that I did not know people or have any loved ones who had experienced cancer. I did. My close friend in Virginia is a breast cancer survivor as well as my aunt. And I had recently come to know and care for a special young mom who had a double mastectomy a few months before.

Regardless of my involvement with these women, there was still that degree of separation between what I knew to be true and my own experience. You know that separation in our brains that says 'it will never happen to us' when we see or hear about a tragedy. I used to think it was a built in defense mechanism that protects us from having to emotionally experience everything around us. Now I think it is a deep lack of empathy and ignorance that keeps us from powerfully coming along side others in their time of need.

I do not think everyone has this flaw. Actually, I know everyone doesn't. They are the people we hear about that learn about a tragedy, and go beyond thinking 'how awful', to actually doing something to meet the person's need. They are the ones that stand in the heat and hand out water bottles to hurricane victims even though they have never experienced one themselves. They are the ones who volunteer at the hospital who have never suffered severe illness or tragedy themselves. They are the people I have met through this blog who went beyond thinking 'how tragic for them' and instead came along side us in a deep emotional and providential way. They are the ones who make a tangible difference in people's lives who are suffering.

I, unfortunately, had this flaw that allowed that degree of separation that I thought protected my heart, but really just left me blind and ineffective to how God wanted use me as His instrument or grace in others lives. And I have met them too. They are the ones who cannot talk to me about CJ. They are the ones who say, I do not read the blog because it is too sad. They are the ones, like me, who could cry at a powerful movie that was not real, but walk around a cancer event unaffected by reality. Little did I know God was about to change all that.

During a time of remembrance at the walk, I thought about those three women I knew, and was grateful for their progress and victory in their battle against breast cancer. I remember thinking of them as I walked around the candle lit sand bags displaying people's names and promising myself I would buy a luminary in their honor the next year. Little did I know I would be purchasing one with my own son's name on it.

Even though there were those brief moments of remembering those I knew, I mostly watched the kids play and visited with my friends. I remember keeping a close eye on CJ because, by this time, he had already begun to suffer with pain in his back and stomach. I specifically remember watching him walk around the illuminated sand bags while chatting with his friends. I myself walked around these bags unaware of the deep significance each one held in someones life.

Ashamedly, I was more aware of what I considered to be bad taste in music being played and bad taste in costumes worn by some of the dancers that were present than I was of why the gentleman with three young girls were kneeling in front of a bag for an extended period of time. I did not pay much attention to the others at the walk or wonder what brought them there. I did not wonder how cancer touched their lives personally. I did not wonder why God brought me to a cancer relay or how He may want to use me in the many hurting lives all around me. Don't get me wrong, I prayed for those around me that night. But unfortunately, I can't say I felt for those around me that night. Therein lays the huge degree of separation. Little did I know that degree of separation was about to close dramatically.

CJ's diagnosis, four months later, was a whirlwind of emotions and confusion. But within that whirlwind there are a few poignant moments that are etched in my brain and on my heart forever. One of those moments took place about a week after CJ's diagnosis of Stage 3 Lymphoma. I was walking in the hallway on my way to CJ's hospital room and passed a poster that said "Relay for Life Cancer Walk" when I froze. It suddenly hit me with breathtaking emotions that we had attended that cancer walk completely ignorant to the fact that CJ would have had cancer in his little body at the time. I remember stopping and staring at the poster as if it were a movie screen replaying scenes from the walk. I saw us walking around bags lit in honor of survivors and of those who lost their battle. The significance of those bags suddenly changed right there in that moment in my heart. I saw the faces of those I did not really look at or reach out to at the walk. I saw the dad kneeling by the illuminated bag. I saw people with tears of grief and tears of joy. I remember standing there in front of the poster with my heart pounding and realizing for the first time, "God, You knew! You already knew it then. Oh my, the implications. Forgive me. Examine me. Teach me." And He has!

"Test me O Lord and try me, examine my heart and mind;
for your love is ever before me and I walk continually in your truth."
(Psalm 26: 2-3)

This Friday, I will once again attend that Relay for Life with CJ. I am not prepared for the wide range of emotions I will experience but I welcome them regardless. I can tell you that I will not be focused on what type of music is playing or what type of attire the performers wear. I will not be there to see my friends or watch the kids play. I will be the mom in tears, kneeling in front of an illuminated sand bag that says, "CJ, never, never, never, give up. (Philippians 4:13) Love, Mom and Dad."

"Praise be to the God and Father of our Lord Jesus Christ,
the Father of compassion and the God of all comfort, who comforts us in all our troubles
so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives,
so also through Christ our comfort overflows."
(2 Cor 1:3-5)

CJ's Relay for Life Web Page can be found by copying and pasting the following address into your URL:

http://main.acsevents.org/site/TR/RelayForLife/RFLFY09FL?px=10779102&pg=personal&fr_id=13459

Relay for Life, Miami Lakes Optimist.
Friday, May 8, 2009

The Other Side of the Bed

CJ had an appointment for a Spinal Tap and Chemo on Friday. Although he has had to go in for blood counts every Friday and take multiple medications at home, this was the first formal appointment in 28 days. I don't think he has ever gone that long before without getting his port accessed and having a spinal tap before, so I was anxious to see if the distance between appointments would create more or less anxiety for him. I think that will have to remain to be seen since the weekly counts appointments are not leaving enough distance between visits to really tell.

Although he was nervous the night before, scared in the morning, and highly anxious when they accessed his port, we were grateful to see a greater trust and leaning on prayer. We literally prayed him to sleep on Thursday night, so he would be able to avoid the panic that was threatening to consume him. Then Friday morning I prayed him awake and we got him ready to go. When the panic and nausea set in as they began to access him, again we prayed.
As I stood by his bed while he was accessed and watched him work himself up to the point of almost becoming physically ill, I couldn't do anything but pray. I can't stop it, I can't make it end any sooner, I can't explain it, I can't do it for him. I can only pray. I really don't know what else to do anymore, except pray. I feel completely powerless over the situation except when I am in prayer about it. Maybe that is how it should be. I'm honestly not sure anymore.

After being accessed, we discovered that due to the decrease we made in his medications when his counts were low last week, CJ's blood counts responded this week by increasing beyond what they should be. Therefore, once again, we are gradually adjusting the medications he is taking at home until they find the cocktail that works for him and keeps his blood in the appropriate ranges. This is difficult because although the doctors are looking at numbers on a printout and adjusting prescriptions to influence those numbers, I am looking at my child and administering actual medications into his little body. This is really a daily surrender for me. The longer this continues and the better CJ seems, the harder it is to continue with the protocol. There is a temptation inside of me to say, "Enough is enough! He is better now and we will handle it from here." And yet, wisdom, or fear(it's hard to tell which sometimes) keeps me right where I am continuing down a dimly lit path that is out of my control.

As for CJ, he is really looking forward to a time when he won't have to go in every week. Even though he only has to have a spinal tap and chemo once every 28 days during maintenance, if he is going in weekly for blood counts it really does not feel like a break to him. Understandably, in his mind, if he is coming in and they are poking him in any way, shape, or form, then it is not a break. The sooner his blood counts level to within the appropriate range, the sooner he can stop coming in weekly for counts. Please pray that this last adjustment will be adequate to achieve that.

I, on the other hand, was shocked to find that I have had difficulty adjusting to being away from the hospital so much after being there so regularly. I know it sounds awful and it is hard to explain accurately what I was feeling. I suppose I feel more...... purposeful, (for lack of a better word).....when I am there. I am somehow more aware of life, feel more productive, and more humbled there. As you know by the things I have shared in previous posts, being there has often been difficult and extremely painful at times so these emotions were unexpected and unprepared for. I expected nothing but relief and was surprised to find confusion and restlessness in my soul. I am not sure I am at a point where I can verbally explain the jumble of emotions that this phase has brought on. I think I am still trying to make sense of it all myself. However, I did quickly discover how selfish this was though through an experience I had this week.

I actually went back to the hospital on Monday with a group of 10 of CJ's and Allie's friends. We volunteered with the children from the 4th floor (where CJ was inpatient) and with the kids in Pediatric Ambulatory (where CJ receives treatment). We made blankets and decorated pillow cases with them and offered a distraction from their treatments. It was rewarding to be there and do something so simple and yet so profound. I really thought we were there to serve them by making the day just a little brighter as they are going through a difficult time but I found it was also sweet medicine to my aching soul.

This experience allowed me the opportunity to be 'on the other side of the bed' for once. I was not there as the mother of a child receiving treatment, but offering comfort from a mom who knows what it is like to stand on the other side of the bed.

One bed I got the privilege to stand by was the bed of a young boy named Jacob. I have seen Jacob many times because he has been there three days a week for the last year and a half to receive dialysis. Jacob can't leave his bed when he is there so we came to him. Jacob's mom told us that he is finally getting a kidney transplant next week and will spend the next 100 days minimum in the hospital recovering. As she spoke, I began to feel terrible for the feelings I had been having about being away from the hospital. I realized she would give anything to not be there three days a week for the past year and a half let alone every day for the next 100 or so. As I stood by this boys bed and spoke with his mother, I was also reminded of CJ's friend Jia Long who is still in a hospital in North Carolina recovering from a Bone Marrow Transplant. He has been there since January and is alone with his single mother who has not one soul of family in the United States. No husband, no family, no friends, no home, no job, no insurance, and does not even speak the language of our nation. How selfish of me to think I miss being at the hospital for how it makes me feel, when I should be nothing but relieved with the distance and healing we have been blessed to receive. Needles to say, my heart of selfishness quickly turned to a heart of gratitude and I became determined to give thanks and seek joy in all circumstances from now on. I gained a lot from the perspective offered from the other side of the bed.

"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus."
(1 Thes 5:16-18)

Thank you for your prayers. CJ is doing well with the medication adjustments and we will go back this Friday for blood counts to see if this last adjustment did the trick. Right now we are in need of prayer for protection of a nasty cold that is making its way through our home. It began with me and now the two little boys are dealing with it. We are trying to keep CJ from getting it and trying to keep mommy from the guilt of bringing it into the home in the first place.

I also want to share with you a website CJ's story was added to. It is a program a mother from the hospital recently began. It is called Send Kids the World. Please check out the site and read the idea behind it and see how you or someone you know may be able to send kids the world through postcards. If you, or someone you know, live in different countries or unique locations in the United States, or if you travel on vacation and visit historic sites, you can send a post card to a sick child who is unable to see these places for themselves.

The web address is www.Sendkidstheworld.com.
Check out CJ' s page and sign up to send postcards.

Sudden Halt

Thankfully CJ's blood counts maintained long enough to allow us to have his party. He had a blast and we continued to celebrate well into the next week. CJ got to attend church on his actual birthday on Sunday and we went out to dinner with family that night.

The celebration continued Monday as we used the Marlins tickets we were presented with at his party. We had a blast at the game. Our friends arranged for a special birthday surprise for CJ while we were there. Billy the Marlin came to our seats and called out CJ's name and announced his birthday to all those sitting in our section. Everyone joined in singing to him and Billy the Marlin gave him a bag of goodies for his birthday. He had no clue and was thoroughly surprised and thankful.

The party continued as we spent the beginning of the week playing in the backyard with cousins who came into town for CJ's party. We did the Resurrection Eggs with our cousins and neighbors and CJ assisted his little cousin in collecting the special eggs and seeing the gospel story come alive through the contents inside. I think CJ really enjoys seeing someone hear about Jesus in a new way for the first time. I am not sure who lights up more, him or the one hearing it.

To really get into spring break we even let CJ swim in the the neighbors pool and hit in the batting cage next door. This was a huge treat for him. I have never seen a kid so excited to be in the water splashing around. You would think it had been years since he was allowed in the pool. He loved the freedom he was experiencing and he took full advantage of it. He had airsoft wars, built forts, played backyard baseball, and had home-run derbies.

As the week winded down we took in our tanned and happy kid for what should have been a quick appointment on Friday for blood counts. Our fast paced week came to a sudden halt when reality hit with blood results notifying us that he was borderline neutropenic, which basically means his counts were extremely low and he is at a high risk for infection if exposed. So everything came to a sudden stand still and reality set in rather quickly. Explain to a kid who has been outside playing all week and feels fine that he has to suddenly stay inside and be extra cautious. Even harder, explain to the little brother that because the neighborhood kids are back in school this week he can no longer play with his little friends next door. And on top of all that, explain to the mommy (that would be me) who has finally felt a little like things were settling in, that we must reel everything we let out tightly back in again.

My brain accepted the results but my heart was disappointed and resisting the fact that CJ would be unable to attend church on Easter Sunday. That was difficult for me because this is one of those days I cherish being together with my family in God's presence to celebrate corporately. We did still attend the Easter family dinner at grandmas house but it was tense for Chris and me both. It is constantly on our minds that his counts are low. We notice and calculate every touch from well meaning family and friends. We hear every cough and sneeze as if magnified by a thousand times over a loud speaker. We try to act normal but it is always in the back of our minds that he is still at great risk. Sometimes I wonder if all the tension Chris and I feel during moments like that permeates to everybody present. It definitely bounces between us like electricity. I watch his face and read the tension and worry there and I wonder if he watches mine. I was tempted to be disappointed that the great week we just had would end this way.

Before I allowed my disappointment to sink in and react with negativity, God gave me a fresh perspective. I realized what a blessing it had been that CJ's counts were down this Friday and not the previous one. Had they been down the last week we never would have been able to have his party and the great week of celebrating and enjoying family and friends over Spring Break. And had they not come down at all we may have let our guard down a little too far ahead of schedule. So thank you God for the freedom to enjoy those many blessings without worry. Thank you that you guarded us temporarily from the knowledge of CJ's risk so we could enjoy his birthday week in freedom. And thank you also for the wisdom to reel us back in when we need reeling in.

In reaction to CJ' s counts being so low, we are beginning the dance of adjusting medications until we find the right cocktail for him to be at a therapeutic, yet less risky level. CJ will go back in this Friday (April 17th) for counts to see if the modifications made are working and follow up with any further adjustments necessary as well as an appointment the following Friday (April 24th) for chemo and a spinal tap. Please pray he is ready both physically and spiritually for that when it comes.

Please pray that his counts will come back up soon and pray that during the time that he is this low he will be free from exposure to infection. Obviously, had we know he was so low we never would have exposed him all week at the level we did. Where our knowledge falls short, I pray God's omniscient knowledge will cover our lack. Please continue to pray adamantly for protection of CJ's organs after long term exposure to these medications. I was recently reminded of a young cancer patient who survived cancer only to succumb to heart failure from all the medications. This is where it takes GREAT FAITH on our part to administer these meds to CJ repeatedly believing they are part of the healing and not the harming. Continue to stand with us. We have come far but have so far to still go.

CJ's Thank You!

Although, I am pretty adamant about my kids doing thank you cards for their birthdays and blessings, due to the nature of the size of CJ's party I know it would be too much for his little hands. I though it would be best, and ask for your understanding, so that CJ may thank everyone corporately through the blog.

Here is CJ's thank you in his own words...

Dear Friends and Family,
I want to thank you all for attending my birthday party. I had such a good time and you all made it very special. I met new people who have been praying for me, I saw old friends and friends I haven't seen in a long time. Even though my parents always tell me there are lots of people praying for me, seeing all of you at the party showed me how many people there are praying for me. I felt very grateful. I had fun playing with my friends and I enjoyed opening all the cards that night. I read every single one. It was amazing how many cards there were. Thank you for coming and for the gifts you gave me. I had such a fun week before we found out my counts were low and it all started with my party!
Love, CJ

The Great Exchange

I recently began a study on the life of David. I love David! I can not wait to meet David! I have so much to ask Him and share with Him. Next to Jesus, I think he is one of the people I most look forward to talking to in heaven. I hope he is seated near my end of the table at the great wedding supper of the Lamb. Needless to say, I began this study excited and eager to see what new things God wanted to reveal to me about David's heart and life. I was in for a shock though. It wasn't David's heart God wanted to take me to the depths of, but my own!

After a great lesson Tuesday night, I began the homework early the next morning asking God to make His Word come alive to me. I wanted it to leap off the page straight into my heart. I wanted a fresh word so bad I could taste it. I can almost say that I sensed, no, I knew it was coming and I couldn't wait to see what God was going to show me. So after prayer, I eagerly began my study.

Although I am faithful with it, I must admit I am terrible at this type of formatted homework because when it says read 2Samuel 7:1-17, I always find it difficult to stop at the last verse and turn back to the homework. I either get caught up in reading the Word or I begin to chase my own rabbits all through Scripture before I get back on track with the assigned lesson.

Today's lesson would be no different. The assignment instructed me to read the above mentioned verses. As usual, I became riveted by David's life on the written page all laid out in black and white. I got ahead of the lesson and did not stop until 2 Samuel 12:14. Unfortunately, I wasn't stopped because my memory prompted me to get back to the homework. It was more like I was driving along an intense road, paying close attention, and yet unexpectedly slammed head on into a brick wall. I had received the word I was waiting for, but I was not prepared for the delivery. It was received with such a jolt and shock that my immediate reaction was like gulping down spoiled, rotten milk and immediately wanting to spew it out of my mouth.

In the past, and through this study, God has shown me some painful things about myself in relation to David. I have always been able to relate to David more intimately than anyone in the Bible. Unfortunately, as much as I wish it were, it is not because he is known as a man after God's own heart, the warrior King. But rather, because he is a man that sinned, and sinned selfishly, grievously and murderously. I have been able to relate to how he can be dancing with all his might before God one minute, experiencing blessing and victory from God's hand and yet coveting and sinning so horrendously the next. I relate to how he can be unashamed before the Lord in worship one minute and then when God acts in His holiness, David is angry, fearful and fleeing God the next. I relate to how he can be so willing to serve God one minute and then unwilling to get too close to Him the next. I relate to how he not only sinned, but heaped sin upon sin to cover it up. I relate to how he knew he was nothing without God because he proved it over and over.

That said, I was reading and relating closely to David's experience with worship and sin and reading about his confrontation by the prophet Nathan when I hit the brick wall. I believe God allowed me to land upon the verse in 2 Samuel 12:14 where, through the prophet, the Lord confronts David's sin and says "the son born to you will die". I cannot tell you how those words leaped off the page and penetrated my heart like a dagger. It has never happened so powerfully before and I was devastated. THIS is the fresh word I was waiting for? THIS is what You were so eager to show me? THIS? THIS? THIS? NOOOO!

After the initial shock, I immediately began to beg God not to take CJ. I believed completely He was telling me He was going to. I was angry and confused. I have walked long enough with the Lord to know when He is using His written Word, His people, His creation or His Spirit to speak a direct word to me. As much as my brain wanted to reject this and convince myself I was 'just reading into it', I knew what He was telling me. I did not read past that line. I couldn't! Besides, I know the end of the story already. God does not take His spirit from David like He did to the previous King Saul, but the son born to David does surely die for the sin that David committed. No matter how hard David wept, fasted, prayed or lamented before God, his son died.

I just sat there staring at the page. The short verse seemed to be larger than all the other print on the page and it seemed to be in bold black letters. I was frozen, waiting for the pain in my chest to diminish. My breathing became short and my brain started to react. I was confused. Why would you tell me this now, Lord?Just as CJ enters maintenance and just after a birthday celebration of his life. It made no sense.

Somehow, keenly aware that, like David's pleading, it wouldn't change anything, I still began to beg Him not to punish CJ for my sins as David's son was taken for his. I began to try question the wisdom in it. Then I began to offer The Great Exchange....my life for CJ's. Take me instead, Lord! Please don't take CJ! But no matter how I pleaded for him to punish me instead, I found no peace. So I just sat there alone with God, stunned and spent. Fear welled up and I sensed God speak to me. He gently said, "What will you do now, Dawn? You can close the Book, and shut Me out. You can drown out My voice so you won't have to face me. You can run and hide like David did when I did something that He did not like or understand." (2 Sam 6:6-10) But I just managed to sit there and whimper, 'No'.

I was afraid of what would happen if Chris woke up and I was sitting here like this. Do I tell him? I have to tell him! I was afraid to see CJ when he woke up. Will he know by the look on my face? I dragged myself to the kitchen to make some coffee and as I was pouring the cup, the Spirit suddenly spoke straight to my heart LOUD and CLEAR......."You know Dawn, The Great Exchange already happened!." I stood there frozen and suddenly the verse that had been ringing in my head went from "the son born to you will die" to "the son born to ME will die".

Relief, coupled with sadness, washed over me like a flood. Once again, God took me to the depths of despair only to show me the most beautiful portrait of love and sacrifice I could imagine. CJ will not die for my sin as David's son was taken as a ransom for his. The ransom has been paid! The Great Exchange already took place on the cross. God's son died so mine could be spared! I believe God wanted to sear this truth into my broken thinking once and for all. I have continued to fall back to this broken mindset and struggle with this since the birth of my first child, which was also, ironically, right before Easter. So God's timing in this lesson was specific. After all the emotions of the morning, I felt like I had just received a beautiful gift from the Lord. The wrapping was not very pretty or painless, but that made the gift all the more special.

As we near the day that marks The Great Exchange, I am acutely aware of the significance of that death. There is no other death like it my friends. Even if God would allow me to die in CJ's place it would be a deserved death, because, like David, I am a wretched, awful sinner who deserves His just punishment. But the life given in exchange for ours was a perfect, sinless, life. "He committed no sin and no deceit was found in his mouth." (1 Peter 2:22)

I pray that you will mediate on that death. Ponder its significance. If you have already accepted the blood shed on the cross as your ransom and as The Great Exchange for your life, I pray you will be once again affected by the price paid to secure your standing before a Holy God! May you rejoice and be restored to the joy of your great and costly salvation. (Psalm 51:12)

If you have not yet placed your trust , faith, and hope in His death, may this Good Friday be the day you do so. Get a hold of the movie, The Passion of the Christ. Watch it. Then run to the cross! Throw yourself at the foot of it, look up and receive the blood of Christ, shed for you.

"Who (Christ Jesus), being in very nature God, did not consider equality with God something to be grasped, but made himself nothing, taking the very nature of a servant, being made in human likeness. And being found in appearance as a man, he humbled himself and became obedient to death— even death on a cross! Therefore God exalted him to the highest place and gave him the name that is above every name, that at the name of Jesus every knee should bow, in heaven and on earth and under the earth, and every tongue confess that Jesus Christ is Lord, to the glory of God the Father." (Philippians 2: 6:-11)

After spending Friday night and Saturday pondering the death of the perfect sacrifice, arise Easter Sunday morning and celebrate, like King David, with all your might before the Risen Lord Jesus Christ. Like David, dance, shout, sing, rejoice and celebrate God's presence. If you have no one and nowhere to celebrate with, you can dance, shout and sing along side me and my family and friends on Easter morning. I have much to celebrate this Easter! Not only the implications of His death and resurrection on me personally, but now, He has given me two of my children back from the grave on Easter! (I promise to share the other story of His precious Easter gift to our family with you soon.)
For now, I will leave you with a song once again. If you have never heard this song, I pray you will listen to it carefully. If you have heard it before, listen as if for the first time. Look to your left by the pictures, there is a You Tube link. Click on it! I PROMISE YOU it will be well worth a couple minutes of your time to watch and listen. I am adding the words of the song below as well.

Lead me to the Cross by: Hillsong

Savior I come
Quiet my soul....remember
Redemptions hill
Where Your blood was spilled
For my ransom
Everything I once held dear
I count it all as loss

Lead me to the cross
Where Your love poured out
Bring me to my knees
Lord I lay me down
Rid me of myself
I belong to You
Oh Lead me, lead me to the cross

You were as I
Tempted and tried
Human
The word became flesh
Bore my sin and death
Now you're risen
Everything I once held dear
I count it all as loss

I'll meet you there my friends. At the foot of the Cross. Rejoicing in the Great Exchange!

Locks of Love

You know from previous posts and pictures that many of the 'guys' have shaved their heads at one time or another in support of CJ. Well, it is the girls turn now! They did not shave their heads, but instead, waited to be able to give a lasting gift with their beautiful locks!

CJ's sister Ailbrandi and our good friend Andrea Chisholm cut and donated their hair to Locks of Love in honor of CJ and in support of children with childhood diseases that cause hair loss. They have been planning this for a while, and the time (or should I say the 'length') finally came. Ten inches that is!

It was special watching these two young girls do something so selfless in support of other kids who are struggling with hair loss. If you are not a girl you may not quite understand how difficult it can be to part with your hair willingly. As difficult as it is, I can only imagine how hard it is to part with it unwillingly due to illness. I have watched CJ struggle through this firsthand and if it is this difficult for a 9 year old boy who can throw on a hat anytime I can not imagine how difficult it is for a young girl especially when some never have the hope of it growing back like CJ does.

Here are some pictures of the girls making the final cut! We are so proud of you!



Before...............





During...................

After!!

If you are interested in donating your hair to locks of love visit www.locksoflove.org for details. Our favorite journalist Jim Robinson who did the piece on CJ back in December for Channel 4 news did a short piece on Locks of Love the very next day after the girls cut their hair. Here is a link to his story http://cbs4.com/video/?cid=2450 . While you are there check out his blog. He posted an update on CJ. Leave him a comment and let him know you appreciate the update! Here is the link http://pod08.prospero.com/n/blogsblog.aspx?webtag=WFOR_JROBINSON
You may need to copy and past the link in your browser.

Speechless

I am stunned! I don't even know how to begin this post or what to say. I am at a loss for words. That's hard to believe, I know.

We are so completely overwhelmed at the outpouring of love and thoughtfulness towards CJ and our family. I really wanted to make this day special for him and I could not have done that on my own. Each and every one of you made this day memorable for him. He was so happy and extremely grateful. He kept telling me how thankful he was and what a great time he was having and how it was his best birthday ever. Well, it was his best birthday ever for his mom and dad too. Six months ago this day seemed so far off. It was a hope and a prayer but clouded by fear and uncertainty.

Thank you, Lord! And thank all of you for helping us put a beautiful smile on his face today. Thank you for coming and celebrating his 10th birthday with us. Thank you for rejoicing in God's Grace with us. It was such a sweet time of fellowship with all of you.

When a gentleman named Tony spoke today, before presenting CJ with a surprise that he and his wife had arranged, he told CJ through tears that CJ had touched many lives. It really hit me hard as I watched and listened to this man, that has never laid eyes on my son before today, hold back tears. He and his wife went to great lengths to make today extra special for CJ. I was moved to see how God has used CJ's battle against cancer to move the hearts of His people and to open the hearts of others. We are humbled and grateful.

Today, in Tony, and others like him, like the man who delivered the tables and chairs and left an extra bounce house free of charge just to bless our family, and in the family that is fighting their own battles who left a large check in the bracelet jar, and in the publix employees who rallied together to cover the cost of the cakes and then some, and in the people who came from Outdoorworld on a Saturday afternoon to bless a little boy they never met, and in the clown from the hospital who rarely gets a Saturday off of events but spent the whole afternoon with our family, and the in the nurse who showed up to wish CJ a happy birthday, and in the friends that set up equipment and spent time serving our family with music and worship, in the church who donated their facilities to our family for the day, in all of this and more, I saw, and was challenged by, the hands and feet of compassion. I saw beyond the heart of compassion to something even deeper and more profound. My heart is full of feelings to raw to express right now.

We sang a few worship songs today and the words of one in particular keep ringing in my head. They define the last six months of our life and since I am at a loss for words right now I will let them finish this post and express what I am feeling. Please read the lyrics thoughtfully:

Blessed be your name
In the land that is plentiful
Where the streams of abundance flow
Blessed be your name

Blessed be your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed be your name

Blessed be your name
When the sun's shining down on me
When the world's all as it should be
Blessed be your name

Blessed be your name
On the road marked with suffering
Though there's pain in the offering
Blessed be your name

Every blessing you pour out,
I turn back to praise
When the darkness closes in, Lord
Still I will say...
Blessed be the name of the Lord
Blessed be your name
Blessed be the name of the Lord
Blessed be your glorious name

Today, in the land of the plentiful, the sun shone down and as I watched my son run and play freely with friends I thought to myself, all is as it should be. Blessed be the name of the Lord! As I watched my son open his gifts and the streams of abundance flowed, my heart was grateful. Blessed be the name of the Lord! As we receive the love of family, friends and even strangers, my Spirit rejoices. Blessed be the name of the Lord!

But even more so, when we are found in the desert place and walk through the wilderness, blessed be the name of the Lord! When we walk the road marked with suffering, blessed be the name of the Lord! When there's pain in the offering, still I will say, blessed be the great name of the Lord.
Every blessing He pours out on our family both glorious and grievous, we will turn back to praise and bless the name of the Lord. Blessed be His glorious Name.

"Stand up and praise the LORD your God, who is from everlasting to everlasting.
Blessed be your glorious name, and may it be exalted above all blessing and praise."(Nehemiah 9:5)

Thank you again! We will post many pictures and more in the days to come. For tonight we just want to say thank you and goodnight. And Blessed be the name of the Lord!

Bitter Sweet

Today was bitter sweet. It wasn't what we expected for day zero of maintenance. After six months of pointing us in this direction, and the last two months especially hearing the repeated "you're almost there" from doctors, nurses, and friends all with smiles plastered across their faces, I think our expectations were a little skewed. We had even begun to nod in agreement, smile back, and repeat the mantra "we are almost there". But secretly, I wondered.......almost where?

Where are we almost to? Maintenance? Remission? Life after cancer? The dreaded normal? Is there less fear there? Is there less worry there? Will God still use me there? Will CJ be better there? Will I know what to do when I get there? And worse even, will there lead me back to here? Yes, I mean the dreaded 'r' word. Well, today we finally arrived there. There turned out to be the "long term maintenance " phase of CJ's chemotherapy of course.

I was eager to get to the hospital this morning and see if CJ's counts would allow for him to begin this long awaited phase. There was only one problem...he was not eager to get there at all. Actually, he was quite defiant and depressed about going. No matter how we tried to encourage him that this was what we had been trying to get to, he wanted no part of it. It made me wonder if he knew something I didn't. Why isn't he happy? I wondered. Why isn't he relieved? Wasn't this the goal? CJ maintained his disappointment and left a broken hearted dad in the driveway as we pulled away. He refused to sit up front with me and instead sat behind me so I couldn't even see or talk to him. So as I drove to the hospital, I began the tap dance I am no good at but am becoming all too familiar with. Talk or not talk; initiate or wait; pray or listen to music; encourage him or distract him; discipline him or feel sorry for him. I tapped through all the steps and missed quite a few I am sure.

After dancing all over God's toes, we arrived at the hospital to find that his blood counts were in a safe enough range to begin this long awaited phase. Surely, this is good news! We are there! But it was not good news for CJ. This meant he would stay and receive the spinal tap he was fasting for, chemo, and begin oral meds. To welcome this new phase CJ began immediately throwing up. He has never done that before. He threw up before they accessed his port and he threw up again after they accessed his port. He felt sick the whole time. It was so strange to finally get to this long awaited phase and for him be sick. But that is how we entered day zero of long term maintenance.

So what is maintenance? Recently, I was once again given the 'here's your life packed into 5 minutes' talk to explain what the next 18 months of our lives would look like. Maintenance is actually six-83 day phases that repeat themselves adding up to a total of 18 months. We have been given a projected end date of 9-19-2010, provided everything runs the course as planned. Since maintenance always seemed to be the goal in sight during the is first six months, the place we were determined to get to, I was anxious to hear about how great it would be. I must admit I was a little surprised of all it will entail. Here is what we were told:

Maintenance will consist of spinal taps that take place roughly every 28 days as well as administering the Vincristine through his port during those appointments. Those spinal taps will taper off as the months pass by. The bulk of his chemo will be taken daily at home by mouth. He will be on multiple medications that will all have similar side effects to those he has taken up until now. Some medications require him to take up to 9 pills at a time. Others are three times a day, some are everyday for the entire 18 months. Some are to counter the other meds he is getting. All are to attack any remaining cells and prevent any new cells from developing. Hearing this long list of medications that CJ's body would have to injest for the next 18 months was let down number one.

When he is not coming in for the spinal taps he will come in for blood counts. His blood counts will have to be monitored throughout the entire 18 months. But here is the catch.....they will be monitored not because they want to make sure they are not too low.....but because they want to keep them low! Huh? I know, sounds confusing right? I was surprised to discover they actually keep his blood counts down in a 'below average' range throughout the entire 18 months of maintenance. Let me explain as simply as I can. (If you do not have a basic idea of how chemotherapy works you may want to read the post where I did a mini chemo lesson here: http://georgefamilybreakthemold.blogspot.com/2008/09/wednesday-spetember-24.html

If you do remember the old post then you remember that in your Complete Blood Counts you have white blood cells, red blood cells, neutrophils, hemoglobins, etc. Your ANC stands for your Absolute Neutrophil Count which is a calculation of your different blood counts to determine your bodies ability to fight infection. So when we say CJ's counts are low, we are usually referring to his ANC. Of course if your ANC is low, it is usually because your other counts are low or off as well. But the ANC is THE NUMBER we look at. The normal ranges for ANC are 1.5 to 8.5 We were surprised to be told that CJ's ANC will be purposefully kept between .5 and 1.5 throughout all of maintenance. As you see, that is just below average. "Absolute Neutrophil Count (ANC) of 500-1000: Carries with it a moderate risk of infection." That was let down number two.

We were then told that we would still have to be cautious of exposure to illness especially chicken pox and infection. We were told he will still be admitted to the hospital if he has a fever of over 100.4. We were told that we would 'wait and see' about when and what sports he can do. We were told he probably won't be allowed in the lake at all. That was let down number three.

So I began to wonder, what will be so different about maintenance and why were we so excited to get here? I asked the doctor this question and was reassured once again that it will get better. I realized the big difference is that this is when most kids prepare to re-enter school. CJ is homeschooled so he does not have that milestone to mark the success of his journey. So maybe CJ did know something we didn't know. He still has a long way to go. And he still has a lot of sacrifice to make in order to get better.

Let me just say that despite all the disappointments we experienced today, we are extremely grateful to be entering maintenance. Despite all the of the let downs, tonight we are rejoicing in God's faithfulness. There is a sweetness about the Lord's presence that offsets the bitterness of the trial. We remain hungry for Him and search for His presence regardless of the circumstances. As I encouraged a friend today that her joy can not rest in her circumstances or it is sure to fail, I realized I too can not respond to what I hear or see but only to what I know. Then, the bitterness tastes sweet.

"He who is full loathes honey, but to the hungry even what is bitter tastes sweet."
Proverbs 27:7

We are extremely thankful that we made it all the way to maintenance without one unscheduled hospital admission or infection. Thank you Lord Jesus! We pray we make it through maintenance with the same results. We give all the glory to God and thank each and every one of you for your prayers. Especially the children who prayed for him. Somehow, I sense that the prayers of the children who were so persistent in prayer for CJ were powerfully effective in reaching the ears of the Lord Almighty and He responded. We are so grateful. We have completed the first leg of our journey and we do plan to celebrate no matter what trials or disappointments we face ahead. However, we are still in need of your prayers:

Please pray that CJ will not be sick or react from the meds he received today. Pray that his counts will go up this week and allow us to follow through with his birthday celebration scheduled for next Saturday. (Remember, you are all invited. See post below for details.) We are getting blood counts on Friday morning so we will know for sure by then. Remember to check here for the final announcement on Friday afternoon!

Please pray that he will not be so anxious about having his port accessed that he causes himself to become physically ill. Pray that he will have the strength and endurance he needs to manage all the home meds and swallow all the pills he needs to take on a daily basis. Pray that his body will tolerate the medications and pray that mommy and daddy's hearts will tolerate the medications. Pray we are wise and alert and mindful of all he needs to take when.

You're ALL Invited

You are all invited to celebrate CJ's 10th birthday and God's amazing grace with us as we get ready to begin long term maintenance. Yes, I said all! Family, friends, faithful blog readers, prayer warriors, supporters! Whether we have ever met you or not, we would like to invite you to celebrate with us.

In God's perfect timing, CJ ends this initial intense 6 months of chemo and begins long term maintenance at the same time he turns 10! How fitting. One milestone marked by another. We simply must celebrate both! We plan to do this by renting a pavilion at a local park and asking all of you to join us for an afternoon picnic and time of celebration.

We have thought extensively about how to do this in the most fruitful way possible and we think the best way is to set the date and time, announce the location, and invite you all to come. We will be providing a bounce house for the little kids and some sports and activities for the older. (CJ has been itching to play a game of flag football with friends!) We will be providing some drinks, cake and snacks. Since we have no idea how many people might possibly show up, we decided the best way to handle the food was to do this 'picnic style'. The way we would handle that is this: You would come to the park and bring lunch for your family. Pack a lunch, pickup subs or sandwiches, pizza or the like and bring it to the park. We will all picnic together and just enjoy the afternoon with families and friends. This will free us all up to just visit and enjoy each others fellowship without the burden of cooking.

The date we have picked is Saturday, April 4th at 11am.
The location of the picnic will be announced as soon as we secure one So far we have had no luck.