Friday, April 24, 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.


Wednesday, April 15, 2009

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

Thursday, April 9, 2009

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!

Tuesday, April 7, 2009

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.




Saturday, April 4, 2009

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!