Monday, December 29, 2008

The Other Side

CJ received the third round of the increased dosage of chemo today for this phase. His blood counts were in a safe enough range to continue and they did not feel his head cold was a problem since he has not had a fever with it. His check up went well and he is at home tired and resting this evening. I enjoyed spending some time alone with him at the appointment. I especially enjoyed watching him talk to his nurse Kathy today as she administered his chemo meds through his port. As she was administering his medicine she told him that she used to get the same kind she was giving him when she had cancer as a young girl. She also told him about all the new medicines he gets that she never received because they were not invented yet. She was diagnosed with cancer at age 13 (over 35 yrs ago) and had her leg amputated because that was the protocol back then. She also experienced chemotherapy and shared much of that with CJ today. It was amazing to hear her tell her story as I watched her administer chemo to CJ. I wondered if she ever envisioned herself on the 'other side' of the chemo when she was just a teenager receiving it herself. I was amazed at how God allowed her to experience both sides of the medicine; first as the recipient and now as the giver.

We recently got to experience something similar. We found ourselves on the 'other side' of something we would have never envisioned ourselves on. Our situation was reversed. We were on the giving side first and now found ourselves on the receiving end. This has been an extremely humbling and emotional experience so I hope I can adequately explain. I might need to give a little background first though to help it make sense so please bear with me a moment to give you our 'church background before I share further.
Chris and I have had the privilege to be a part of three great churches in our 14 years of marriage. We were married at Holy Cross Lutheran in North Miami and attended there for the better part of 10 years. We have many memories here and grew immensely as young Christians during this time. Chris served as an elder here and I participated in various ministries. To make a long story short, we thought we were moving to Virginia, tearfully said our goodbyes to our church family at Holy Cross, and visited a local church on our block during the waiting period. What was supposed to be a couple months turned out to be a year. Then the acceptance and realization that we were not moving and would have to make some decisions regarding what would be our home church. We had also grown to love this little church called North Palm Baptist Church and the people we met there. Should we stay here? Should we go back to our original home church that was filled with so many memories? It was an agonizing time for us in many ways because Chris clearly sensed God saying no to both those options and yet did not seem to know what God was leading us to. And I was of no help as I was just wanting a place to call home. God did a major work in our hearts during that time, and after much prayer He then lead us to our present church Palm Vista Community Church in Miami Lakes, which I thank Him for every day! I give you this background because I know many people leave churches on bad notes but I want you to know that Chris and I love all three of these churches and the people there. God has used each one in our lives in different ways to prepare us for this trial. He has also used each one to carry us through this trial. Each one has come along side us in prayer, support, and love and we are extremely grateful.
That history shared, I think you will get a better picture of why this experience has been so humbling for us. While we were at Holy Cross we served on different ministries in different ways over the years. One of the ministries we grew to love as a family was the Thanksgiving Basket Ministry. I assisted a friend who lead it one year and then stepped in to lead it when she earned a well deserved rest after many years of leading it faithfully. This ministry provided full Thanksgiving meals and more to over 200 families in need each Thanksgiving. Most were in need financially, but many were our elders and shut-ins who were alone. After fund raising, purchasing and organizing food, building boxes and compiling lists, we would organize a mass day of pick up and then we would deliver the boxes to the ones who could not pick up or we chose to bless spontaneously. This was my favorite part! I loved piling in the car with the boxes and the kids and delivering a box to a needy family. Sometimes we would spend time with the people and I know those are memories my kids and I will have forever.
Another ministry we grew to love and participated in was Christmas Caroling. At Holy Cross, we would pile in cars and split into 4 or 5 or 6 different groups and then caravan throughout North Miami and Christmas Carol at specific homes where our elders, shut-ins, and sick were. We would pile in their yards and sing carols to them. I loved doing this and when we attended North Palm Baptist we did not hesitate join them as well. This was a little different because we experienced caroling throughout our own neighborhood to our very own neighbors.
Okay, now for the humbling part. I don't know how often a person gets to stand on both sides of the same ministry like we experienced. Often, a person will go back and bless others in the very area they were blessed in their time of need. I have experienced that myself and it is a full circle and rewarding experience. But this was different! God brought us from the side of giving to the humbling side of receiving. That is exactly what our family experienced this year when Holy Cross showed up at our home to deliver not one but two Thanksgiving Boxes. I can not adequately express the range of emotions we experienced. Never, in all the years we spent at Holy Cross, all the homes we delivered boxes to, would we ever have dreamed we would be on the receiving end of that ministry. It is a full circle like I have never known. It went beyond receiving a blessing for me; it was a needed lesson in humility. God brought me to my knees in repentance and removed the scales from my eyes with that one act of kindness. I lead and loved that ministry, but in my heart I often judged who should and shouldn't receive a box. After spending hours upon hours raising funds, making calls, collecting food, organizing, filling boxes, etc., I would then judge when someone showed up to pick up a box driving a certain type of car or wearing a certain type of clothes. I would judge when we would get to the address of delivery and pull up to a beautiful home with nice cars in the driveway. I honestly and regretfully would! And I am so thankful God allowed this to happen so I can stand on the other side of that box and receive an undeserved gift for the simple fact that God decided to bless my family through this church and their willingness to serve others. I hope as you are reading this you can feel even a tenth of the emotion I felt that day. Picture yourself on the other side of the window the next time you hand money out of your car to a homeless person. Picture your children on the receiving side of the gift when you donate toys to a local charity. Please hear never know when you will be on the other side of the blessing! It was the farthest thing from my mind when I filled boxes with food or sang silent night to a sick person. I told you before in a previous post, I believe God is teaching me a deeper level of authenticity. I don't know any better way to experience it than that. To stand and receive what you once gave. To be able to know both sides; the blessing and the need. To be able to empathize in a deeper way than I ever thought possible. It was a humbling and a painful reflection of my heart; but it was full of compassion and mercy for God to do that to me.
To drive the point home and be sure He completed His sanctifying work in my heart in this area, God brought both of these churches to our home to Christmas carol to us. North Palm came early in the month and sang to us in the very neighborhood we walked with them last year at Christmas. Did I mention humbling yet? Then, this week, 100 people from Holy Cross stood in our yard and sang songs of joy to our family. It was all I could do to stand there and hold back tears as the very group of people we used to go caravaning around town with stood in our yard and sang Silent Night. My heart was anything but 'silent' that night. It was alive with repentance, confession and then filled with God's bountiful grace and mercy as once again, I stood on the 'other side' of the blessing.
Thank you Lord for this experience. I know this will make me a better servant and I will be better equipped to serve your people faithfully because of it. I will always be able to picture myself on 'the other side'.

On the receiving end:

Thanksgiving Boxes.............. Christmas Carolers 2008
On the giving end:
Christmas Caroling in 2005 with Holy Cross..CJ Singing Carols to the sick

Thanksgiving Basket Ministry 2003 at Holy Cross
Allie, Brett, CJ and daddy filling and delivering baskets

Friday, December 19, 2008

A Heart Full of Faith

I apologize for not getting an update out sooner. It requires uninterrupted time that is a precious commodity around here. Thank you for all who have asked for an update.

CJ had his appointment yesterday and his counts were in a safe enough range for him to continue with the increased dose of Methotrexate. This phase of his treatment calls for him to receive a gradually increased dose of this very strong medicine every ten days for 57 days. This will be dependent on his blood counts and side effects. As the doses increase, he will be more susceptible to experience side effects so we ask for continued prayer in that regard. The effect he experienced most the first round was nausea and vomiting. We were able to get that under control and are better prepared for it after this round. It seems car rides increase the nausea and overpowering smells of food. We took him to a small family restaurant for the first time last week and as soon as the food hit the table he threw up. So we packed up and left and realized it was too soon and probably a bad judgment call on our part. The side effect we are most trying to prevent are painful mouth sores common at this stage. Please plead with us for protection against this, especially with Christmas right around the corner!

A couple weeks ago, we attended a Christmas party for cancer patients and their families. This party is called 'Love Jen' and is hosted annually in memory of Jenn Masi who died of cancer at age 14 about 20 years ago. CJ was very affected by this party. Although he had a great time, he was always aware that the party had Jen's name and that Jen was no longer here. He asked a lot of questions about her. He thought a lot about her and her family and what it must have been like for them. Then, when we were at his appointment yesterday, Mr. Masi, Jen's dad, came in to meet us and say hello. He had heard how much CJ loved the party and what it meant to our family to be able to go together. He spoke with us for a little while and gave us a beautiful glass heart that says Love Jen on it. It was nice to meet him and be able to say thank you. All throughout the day CJ would ask to see the heart and hold it. As he worked the heart in his hands I could see that he was also working the idea of death in his mind. He would stare at the heart and say, "It's really sad isn't it?" Eventually, he started to ask questions about death. What do I think it is like, do I think it hurts, does the person know they are dying, and so on and so forth. We were able to talk through many of these questions both factually and spiritually and he seemed to be content with the answers. He decided that my best friend's husband who is a hospice chaplain has the hardest and saddest job of all. He also decided that Jen's death was sad but that her memory was sweet. He was impressed that her life continues to bless others even decades beyond death. What a victory that is! Last night, as we were tucking him in, he brought up the subject of death again and seemed to quietly ponder the idea. It reminded me of a conversation he had with me one morning on the way to the hospital about a month ago. He suddenly said, "Mom, would you want to die a regular death or die for a cause?" It caught me off guard and I thought about it for a moment. I guess most of my life and most people I know have said, "I want to die peacefully in my sleep at a ripe old age." But the more I thought about it and the more I grow in my faith the more that seems less appealing. So I said to him, "I would rather die for a cause if it would bring glory to God and draw people close to Him, what about you?" He said, "I would rather die for a cause." We continued to drive and that was the end of the conversation and the subject of death, until yesterday. As we enter into the season of celebrating the birth of our Savior, I pray that his little heart and mind would not be burdened with the idea of death, but that he would have a heart full of faith. I pray that he would rejoice in the fact that the only death we needed to fear, Jesus already accomplished on the cross in our place. And one day: "...the saying that is written will come true, 'Death has been swallowed up in victory'." As it is written, "Where, O death, is your victory? Where, O death, is your sting?" 1 Cor 15:55

We also attended church this past Sunday as a family for the first time since this all began. Even though CJ was not feeling 100%, his counts were borderline, and he was nauseous, we decided to go based on faith and trust God with the details. We had the strong desire to be there together as a family and see everyone face to face. It was so great to be with our sliver of the body of Christ and to worship with all of you corporately. There is something irreplaceable about God's people coming together to worship and praise Him. It had been way too long! But, in all honesty, there were some downfalls from being away. Our little one, Corey, who is 1 and 1/2 completely forgot how to 'go to church' and how to use his 'quiet voice'. He can not seem to understand why we go from 30 minutes of clapping and singing and praising to complete silence. Then, during the teaching, he found a camera in my purse and decided Pastor Pino must be up there performing on stage and he started yelling "geese, geese" over and over which of course stands for 'cheese'. Needless to say, we are a little rusty in that area of training due to our time away. In a moment of frustration and embarrassment I even thought, what are we doing here? And yet, in my failure to trust God to work through my inadequacy as a parent, He never ceases to amaze me with His faithfulness and timing. The message was straight from God's mouth to my heart. I should have been the one pulling out the camera and capturing the moment. For anyone, who like myself, struggles with joy at this; 'the most wonderful time of year', I would strongly encourage you to listen to this message. Our lack of joy would be evidence of our lack of faith and attempt to receive the Spirit by our own good works. And as the apostle Paul (and my pastor) so pointedly reminded us... "You foolish Galatians (or in this case Floridians) who has bewitched you?" Gal 3:1. I captured that message. Not with my camera like Corey wanted to, but with my heart. It was a needed reminder of God's complete work in which I can not add to.
As is typical, our enemy was quick to be about his business and seek to steel joy from my home this week. But Chris and I are standing our ground. We have raised our swords and shields and are fitted with the armor of God against which the enemy can not stand. As he flees from our home (briefcase in hand)..."we rejoice in hope of the glory of God. More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character; and character produces hope." Romans 5:3

To hear the sermon.....and be here.

Our biggest challenge as a family now is making decisions in regard to this time of year. What holiday parties to attend and how often to see friends and loved ones (especially the ones visiting from out of town). This is not only the holiday season but also the cold and flu season and that is constantly on our minds. CJ has 5 little cousins and 4 aunts and uncles in town that all want to see him and play with him and we struggle with the weight of those decisions. Please pray for discernment and a shield of protection for CJ against illness. We realize he may be doing well but if anyone else is sick it keeps him away from his family and friends. He has struggled lately with his inability to see people and attend events.
We want to thank everyone who was helping us look for a second vehicle to use to get to and from the appointments and all who have offered to help. We think we have the matter solved at least for a while. My step father had open heart surgery last week. While he is recovering, he is unable to do some of his hobbies. He needed to free up some space in his driveway so he generously offered to let us use his truck until he needs it again. This solved our problem for the time being. We are extremely grateful for his generosity. Thank you Enzo! And thank you everyone who was keeping their eye open for us!
We also want to thank everyone who has continued to provide meals for us to cover the dates we have appointments and hospital visits. It has been a real blessing to our family and we give thanks for each of you and your generosity to us.

Thursday, December 11, 2008

CJ's Star

CJ's counts were up and he was able to begin phase 3 of his chemotherapy on Monday. It began with a Spinal tap, some new chemo meds, and a review of his case with the doctors. It was followed by two shots in the legs on Tuesday that are administered simultaneously by nurses. Pet Scan results are in and it confirms what the CT Scan said. There is some mild lighted areas on the Pet Scans but no reason at this time to think they are new tumor areas. They think they are either continued improvement of the original tumors or post-treatment inflammation. They did express that CJ may never have clear scans because of scar tissue that can be left behind so we learning to let go of our desire to hear the words "all clear" knowing that there may always be some residual scarring. Yet we are still seeking God for complete healing of not just the cancer but all effects of the cancer as well.

Therefore, we charge in to stage three confident of continued healing and thankful for all of Gods grace in CJ's treatments. We are asking for prayer for continued protection against toxicity from the chemo and from painful side effects that are common at this stage.

I have shared with you before about how emotionally draining and painful it can be to be at the pediatric ambulatory unit for hours upon hours each week. But I have longed to share with you this feature of the pediatric ambulatory unit for some time. It is a feature most of the rest of the hospital actually knows nothing about unless they have been down there so you are getting a rare glimpse into a unit at the hospital not seen by many. It is a wonderful feature that brings comfort, hope, joy, smiles and even color to a very sad and depressing unit; but not until you get past its powerful implications.

The Real Sistine Chapel:

While studying the great artists with my children, I remember once reading that stepping into the Sistine Chapel and looking up at ceiling at the famous paintings of Michelangelo, "creates feelings of passion and an overwhelming sense of history." Those who viewed this masterpiece also relayed that looking up at the chapel ceiling provides a glimpse into the mind and heart of this great artist.

I could not even imagine what this must feel like until I walked into the pediatric ambulatory oncology unit at Joe DiMaggio for the first time. When you first enter you are confronted with feelings of passion and you embrace an overwhelming sense of history as you look up and see the ceiling tiles covered in paintings done by kids who frequent this unit. It is quite an overwhelming sight because you realize each and every tile represents a child (and a family) whose life has been touched by this life threatening disease.

I remember thinking at that time 'I don't want my child's name up there'. I know now that my thoughts betrayed my feelings which were, 'I don't want my child to have cancer." Nevertheless, I couldn't take my eyes off the ceiling. I kept reading the tiles and wondering about each child and all that they went through. Were they still in treatment? Were they cancer free? Did they win their battle with this devastating disease? I saw the name of a child I knew.....Pat Padraja is the son of another police officer who had recently battled Leukemia and is in recovery. I remembered seeing him a year prior at a friends house during his treatment. At first, I kept focusing only on Pat's tile and staring at his name. I kept telling myself, 'he's doing okay now, he's doing okay now, he's doing okay now'. I just kept repeating this mantra to myself. Seeing his tile actually brought me a ray of hope at that moment. I did not want to focus on the other tiles yet because I did not know who they were and where they were. The reality that many of them may not be 'doing okay now' kept creeping in. In time though, I began to take it all in. It really is a stunning sight. It is art at its finest. An expression of a child at the most intense moment in their life. Somehow, the child leaves not only their name on the ceiling but like Michelangelo did, they also leave a small glimpse into their life and heart through these simple tiles. My heart was grieved and yet oddly encouraged by seeing this collage of names suspended from above. I knew each and every child represented above me left a lasting mark not only on this ceiling, but on the lives of those who knew and loved them.

The child life specialist noticed us looking at them and asked us if we would like to paint a tile. I thought, 'No' but somehow said 'yes'. So we spent the next couple hours painting our very own ceiling tile. We stared at it for a long time not sure what to do. Many kids had added the things they loved like sports. Others painted scenic pictures, and some simply painted their name. We thought about it for a while and then began painting CJ's name among the stars. As I watched CJ paint I was reminded that it is the Lord who "determines the number of the stars and calls each by name." And just as the Lord knows every star by name, he knows CJ by name. So we named our star CJ and placed his name in the center of it to remind us that he is tucked firmly in the center of God's loving hands which created those very stars.

For the next couple of weeks we visited the unit for treatment and CJ's tile was always sitting on the floor, leaning up against a wall. That is when I realized I actually did want it up on the ceiling because I found that it bothered me that it wasn't hung. It felt incomplete. Before long, it disappeared into an office until a place could be be found to hang it. I figured it would probably get tucked away in a corner or back hallway where no one would see it much since ceiling space was limited. But just like the Lord has done with CJ's cancer from day one, it was placed out in the open for all to see. I had to smile as I realized his tile would literally shine down on the nurses and doctors everyday as they treated patients.

I pray that this simple ceiling tile will not only bring hope and encouragement to other patients as they visit the unit, but I also pray his star sings praises to the Lord as it is suspended from above just like the stars in the heavens do.

Praise the Lord,

Praise the Lord from the heavens,
praise him in the heights above.
Praise him, all his angels,
praise him all his heavenly hosts,.
Praise him sun and moon,
praise him, all you shining stars.
Psalm 148: 1-3

Pictures of the ceiling.

Sunday, December 7, 2008

Sharing CJ's Story

As you all know from reading CJ's story, one of the most difficult aspects of a cancer diagnosis for this 9 year old boy was learning he would not be playing sports during his treatment. All sports equipment got packed away but we did not have the heart to take down his basketball hoop. That makes these pictures we just received all the more special. This is our neighbor Daan sharing CJ's story and bracelets with Dwaye Wade and Alonzo Mourning of the Miami Heat. It is strange to see Dwayne Wade holding one of CJ's bracelets since CJ has a model of him in his room. My kids became a Wade fan when they read that he chose the number 3 to symbolize his faith in the Trinity. We are Alonzo Mourning fans because of his faith and work with Athletes for Hope. He, among other fine athletes, has used his blessings to bless others, and that is something we all need to learn to do more of. This is the amazing part...CJ also chose the number #3 for his go cart for the same reason as Wade. Our other son, Brett has #33 on his cart. This symbolizes the age of Jesus when he died. When you put them together you have the phone number for God. Jeremiah 33:3 "Call to me to and I will answer you and tell you great and unsearchable things you do not know." And guess what number Alonzo Mourning wears. You guessed it....33. God is so amazing. He is in the most minute details. It is no accident it was these two men who my neighbor encountered to share CJ's story with. We are so amazed at God's hand in every detail in regards to CJ.

Thank you Daan for caring enough about this little child to share his story.

Dwayne Wade holding a pray for CJ bracelet!

Alonzo Mourning receiving a Pray for CJ bracelet.
And he put it on! Thank you Mr. Mourning! You just made this 9 year olds day! Nothing else you put on today is more valuable in Gods sight!

Even these pictures flooded us with painful memories of the past. CJ attended the Miami Heat Basketball camp in the summer of 2007. His stomach was in severe pain and he struggled to get through the week. He was very excited about the camp and we just thought it was a stomach bug or nerves. At the end of the week the coach writes an evaluation on each child. They point out positive aspects of the child's performance and give pointers. CJ did well but the coach also wrote, "Sometimes it seems like you are not having much fun". This always stood out to me because CJ is so outgoing and friendly. I realized he must have really not been feeling well for the coach to have noticed. Looking back now, it is amazing CJ even was able to complete the week. Who knows what was beginning to develop in his little body considering that one year later he was diagnosed with Stage 3 Lymphoma. He is my hero!

Here is CJ at the camp in June 07:

CJ in his Wade jersey at camp.

CJ receiving his evaluation from his coach.

And there you have it....33:3 .....Sorry folks, but at this point we are way beyond coincidences!

Thursday, December 4, 2008

Scan Results

Beginning Phase 3 is on hold for CJ's as his counts were too low to begin. He will go back to the hospital on Monday to test his CBC's again and see if he is ready. His red and white cells are slowly coming back up but not enough to start the new chemo. His platelets however, are down. I hope these three days will allow his body time to recover enough to not only begin phase 3 but to begin it strong.

We were given the results of Tuesdays CT Scan today. I think everything is the same. No new masses detected and still near complete resolution. I wish I could explain it better but I think it may be best to just copy the impression of the radiological findings here. Here is his impression summary...

"Near complete resolution of the adenopathy and soft tissue masses seen previously. The chest is normal. The liver is normal . There are some lobular changes in the kidneys which may represent some fetal lobations versus subtle areas of scarring. No renal lesions are identified. There is improvement but not complete resolution of the perirectal fat infiltration with a small amount remaining to the left of the rectum and in the presacral area. No other abnormality is identified."

So there you have it. There is some more improvement but it is not completley gone/clear yet. There is no seen adverse affect on the other organs and for that we thank and praise God. I wish I could explain the fancy technology, but I can't. I even looked up some of the words to try to but I only got more confused. I look forward to the PET Scan results for further confirmation of the above findings. Although we are thankful for the present results, when I read that it does not speak life and healing to me. So I made my own impression summary:

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jer 29:11
"Because he loves me"says the Lord, "I will rescue him; I will protect him, for he acknowledges my name. I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him my salvation." Psalm 91:14-16

I like my findings much better, don't you. They speak life and healing to me! I feel better already just typing that. I should be a radiologist! I am pretty good at this. I know you all probably think I am losing it. But I think I am just really, really tired and a little saddened by all that is around me at the hospital. The words of the medical field can be cold and impersonal. That is why I love to wash it all down with scripture. The words of God are warm and personal and breathe life into my bones. I pray they will also breathe life into CJ's bones right down to his cells. Wow, wait a minute! Consider Hebrews 4:12 with me for a moment..."For the word of God is living and active, sharper than any double edged sword, it penetrates even to dividing soul and spirit, joints and marrow..." Wow! That verse sure comes alive when your child is actually suffering in his joints and marrow. Can you think of a double edged sword that divides right down to the bone and marrow? is a scalpel. A physicians knife! Used with precision and skill . And yet, we have the Great Physician with the most precise scalpel of all.... His very own words. So there you have it, my impression and findings are much more precise.

Prayer requests:

Pray for CJ to rebound in his counts as well as for all the family to rebound in strength and rest. It is easy to grow weary as the storm rages and the battle drags on.

Please pray for Chris. He is sick with a head cold. He is struggling because he is terrified of getting CJ sick. It really is unbelievable because he is the one who has been an absolute germ freak since this all started. Actually, I take that back, he was already a germ freak before, now he is paranoid. Seriously though, he is struggling because he can not kiss or hug CJ at all. I think it has almost been a week since he has hugged, kissed or cuddled with him and I know that must feel like an eternity. Mostly, I believe God is trying to demonstrate his sovereignty and control to Chris once again. He has tried so desperately to be in control of all forms of germs that CJ may come in contact with but I think he was in need of a fresh reminder that he is not in ultimate control. I think God is asking him to trust Him not only with the big issues but the little details as well. So far, no one else has gotten sick. We ask for that to remain so and for Chris' healing and humbling.

He had an interesting encounter this week I would love to share with you. For those of you who know Chris, you know he is extremely private. As you can imagine, this situation has challenged him to share very personal things like never before and God has blessed his openness immensely. He was at a car lot this week because we are still in need of a second car to go back and forth to appointments. Well, he explained to the salesman what we were looking for and why we needed a simple, inexpensive car to go to appointments. The man immediately said, 'You just met a man who goes to mass every morning to pray." He prayed right there on the spot in the car lot with Chris and they were able to share their faith with each other. Chris gave him a bracelet and he said he would continue to pray for CJ. This really encouraged Chris and I pray he will continue to be bold in sharing himself and his faith with others. I thank God for placing that gentleman in that spot that day to encourage Chris.
We also thank you all for your prayers and encouragement. Thank you for the calls and comments asking about the results of the scans. Sorry I couldn't get this up sooner, but my editor (Chris) fell asleep. It will be posted as soon as he approves it! I look forward to sharing with you a very special feature of the pediatric ambulatory unit in a future blog and pictures.

Wednesday, December 3, 2008

Links to Newscast

For anyone who missed it here is the full story that played on CBS 4 news. Don't forget to go to Jim Robinson's blog and tell him what a great job he did! He was fantastic with CJ and even added a link to this blog from his blog.

News Clip:
Jim's Blog is...

Tuesday, December 2, 2008

Tune In....

As CJ was getting his CT scan today at the hospital, Lotsy Dotsy, the hospital clown, walked in the room. As soon as he heard her voice behind him, he strained his neck to see her with a big smile plastered across his face. I was so relieved to see that smile because he has just endured a painful process of getting an IV in three different veins until they could find one that worked. It wasn't pretty.

Lotsy played the harmonica for him as he got his scan and then she told us she had good news. Channel 4 was on their way to the hospital to do an interview with CJ and Lotsy! It is meant to be a heartwarming piece about a boy and a clown and how that clown helps this boy get through some of the most difficult days spent at the hospital battling cancer.

We were all very excited about this news but I noticed CJ began trembling. We thought he was cold but he was a little nervous when he heard about the interview. When the journalist, Jim Robinson, showed up, CJ was completely at ease. We were all so impressed with this man as he interviewed CJ. He was fantastic and made CJ very comfortable. It was like sitting down and talking to a friend. At one point, CJ whispered in my ear, "Mommy, why does TV movies make journalists look so mean? They are really nice." I had to laugh because I realized why he was so nervous at first.

The interview went great and we are excited to see how the piece turns out. It is scheduled to be aired on Channel 4 between 5 and 7pm tonight! Be sure to Tune in! It will also be on the Channel 4 web page at in case you miss the TV one or do not live local. Mr. Robinson said he will put a link to this blog from his blog so I strongly encourage all the blog readers to check out his blog at and read the article on CJ he wrote and let him know you appreciate this piece. I would love to see him get a flood of response from this piece. Then he will be sure to follow up with CJ's story in the future and we will make more people aware of children battling cancer.

Don't forget to pray as we anxiously await the results of today's scans. We know they got good pictures and we are praying that means good and 'clear' pictures, with no sign of any further disease. He is also scheduled for PET Scans on Thursday after his chemo. Please pray with us that the tumors will be completely gone and not just "nearly" completely gone as we were told before.

Sunday, November 30, 2008

What is Normal?

Thanksgiving has come and gone. It was more difficult than I thought it would be. I find it amazing how quickly we can move from being completely selfless and blessing another person one moment, to feeling completely sorry for ourselves the next. I got to experience this first hand this week. My father stopped by for a brief visit to see the family and wish us a Happy Thanksgiving. He was sharing with us how he had just encountered a homeless man at the gas station. He had the opportunity to share his faith with the man and encourage him. As we were saying our goodbyes, my dad asked if we would mind making a plate of turkey to take back to the man.

CJ immediately lit up like I have not seen in a while. This is his kind of thing. He loves to feed the homeless. When he was little he wanted me to stop and give money to every homeless person we saw. Living in South Florida, you encounter a lot of homeless people in one day of driving around town. When I would pass someone by he could not understand and it became a difficult thing to explain to a small child. Eventually, I took him to the Miami Rescue Mission which is a large homeless shelter downtown. I wanted him to gain a better understanding of homelessness and I was also hoping to help him see that it was not always beneficial for us to give them money. The director of the Mission actually told CJ it was better not to give money in most instances because it only enables them to remain homeless. After that, CJ decided we needed to feed every homeless person we saw instead of give them money. So now you can appreciate why he came alive when we made the plate for the homeless stranger.

As I was making the plate CJ was standing there telling me to add more food and to not forget desert. Then he went and got a Bible he had purchased to send to troops oversees and said, "Mom, can I send this with the food?" He wrote something to the man he called 'Mister' in the Bible. He pointed out to me that the inscription page had this verse Jeremiah 29:11 "For I know the plans I have for you, declares the Lord, plans to prosper you and not harm you, plans to give you hope and a future." He drew an arrow pointing to it so the man would notice it. I wondered how he could see that the verse applied to the homeless man but sometimes can not see that it applies to himself as well. As I watched him fill out the Bible, I realized that for that brief moment he was not thinking about Cancer at all. It was so far from his mind and he had joy on his face and peace in his heart. All was right and I thanked God for this little glimpse into his spirit. I was a happy mommy......for about 15 more minutes!

My dad left with the plate full of goodies and we set the table to eat. Suddenly, everything began to unravel. The baby decided he was not served fast enough and couldn't seem to understand why this meal should be any different than any other so he began crawling on the table reaching into the dishes and feeding himself with his hands. Did I mention he was also screaming the whole time? Brett and CJ were both repeatedly saying, "I'm not really hungry yet". Allie and I were transferring dish after dish to the table so we could eat while it was hot. Chris begins loading CJ's plate and suddenly it happens....CJ sees this mound of food he is expected to eat and his spirit just caves in. I can literally see his countenance fall, but I do my best to enforce a happy thanksgiving and remind them of all we have to be thankful for (and of how hard I worked to get this all done) Oh how pitiful I am! I wrangle the baby repeatedly and am now no longer hungry myself, but tradition calls, so I insist this is going to be a special thanksgiving. But we just continue to slide down that slippery hill of self pity. At first I thought it was only CJ feeling sorry for himself, but now I realize it was me too. He was upset he couldn't be with everybody for Thanksgiving. He was upset because he thought our tradition would be no fun without everyone else there. He was upset that he was expected to eat so much food. I was upset it wasn't going the way I had planned and pictured in my head. And the baby, well he was just plain upset. Things just did not seem to go as planned. I realized I forgot to burn the CD I wanted to play in the background as we ate. I realized in the chaos we never read the scriptures we always read before we eat. And I surely never had that moment during my meal that I encouraged all of you to have where I lovingly, unhurried gazed across the table, thanking God silently for each and every one present. The only thing I remember thinking is, where did it all go wrong? I wondered how we could go from joyfully feeding a homeless person one minute and the next we are consumed with self pity and aggravation.

The meal behind us, scriptures read, thankfulness discussed, prayers said....we then spent a good half hour letting CJ 'cry it out'. He cried for "normal". So I have spent the past two days really thinking about "normal". Actually, I have spent the past two months thinking about it because it is a word I have heard a lot since this began. I have been told to maintain "normalcy", keep things as "normal" as possible, and to try to live a "normal" life. And I have finally decided it is a myth, there is no such thing! What is normal? What I had last month, last year, five years ago? Is normal my 'comfort zone' where I am not confronted with any difficulties or big decisions? I actually believe 'normal' is one of the enemies schemes to keep me unsatisfied with my present circumstances. If I am constantly looking back trying to maintain something I had before, then I am missing what God has right in front of me, here and now. I even looked up the word in the dictionary and found words like average, regular, expected. Doesn't sound as appealing does it? We don't mind being called normal but...average...regular! In case you have not read me previous post, I mentioned that right before this happened I literally asked God to not let me live the 'easy life'. I told Him I really wanted to 'do the thing' and make it count. Sounds like a willing forfeit of average, regular and normal to me! To ask Him for normal back now seems really contradictory. And I have discovered it is a chasing of an illusion. What is normal? We are homeschoolers, is that normal? We home birthed our last baby, is that normal? We are passionately in love with Jesus Christ, is that normal? What is normal? Are you normal? I explained to CJ he has never been normal nor do I want him to be. He was a different kind of child from day one. Full of the deep spirituality and childlike faith. God never calls us to be normal in scripture. But He does call us to be set apart. He calls us to leave the wide road and enter through the narrow gate. He instructs us to make use of our different gifts given to us for different purposes. Doesn't sound much like the status quo to me.

CJ's spirits and countenance lifted and he began to play with his siblings and ask about the homeless man. He wondered if he got the food and if he got the Bible. And once again, as he focused on others I saw the joy return and cancer slip away from his mind, along with normal.

"Enter through the narrow gate. For wide is the gate and broad is the road that leads to destruction, and many enter through it. But small is the gate and marrow the road that leads to life, and only a few find it."

Matthew 7:13

Medical update and prayer requests:

CJ has completed phase two of his treatment. Praise God and thank you for your prayers throughout these two phases. We believe they have made all the difference in the world. As before, he will be rescanned beginning with a CT Scan on Tuesday and a PET scan to soon follow. Provided his blood counts are in a safe range, CJ will begin phase 3 of his treatment on Thursday. This is a 57 day phase that begins with a Spinal Tap and chemo at the Pediatric Ambulatory Unit followed by a visit once every ten days throughout the phase for gradually increased dosages of chemo as tolerated.

First, please pray for clear scans and complete remission of the cancer. As his chemo is increased he is at increased risk for toxicity and infection so we ask you to pray for him to tolerate the chemo well and for continued protection of his liver, kidneys and heart. We are indebted to you for your prayers and love and support. Chris recently reminded me we are just getting to the meat of the treatments so please press on in prayer and be steadfast with us. I would also selfishly ask that you pray for Chris and I as we try to balance life with cancer and yet look ahead to life without cancer. We are asking God to keep us unified in thought as we move ahead into these new phases of treatment.

Wednesday, November 26, 2008

The Big Three

This Thanksgiving we are thankful in a whole new way. This experience has taught us an invaluable lesson about being thankful. Our family typically has a large family gathering at Thanksgiving and we celebrate many of the common traditions I am sure most of you do. One of our family traditions is that I place a small piece of paper on each plate and before we eat we all write something we are thankful for. After the meal, we pass them out and everyone reads one out loud. Many times they are serious things and other times they are lighthearted and even humorous. We love to sit down and look back at all those little slips of paper we have saved from over the years and read what they said. The majority of them say the obvious, "I am thankful for Faith, Family and Friends." I call these 'The Big Three'. I used to think that writing the big three was an easy way out of putting any real effort into writing something heartfelt. But as I thought more and more about thankfulness today, I wasn't so sure anymore. I was thinking about all those little slips of paper and I thought, 'no little sliver of paper will do this year'. And surely, no amount of words written on that paper could adequately express the deep gratitude we feel. I spent hours today thinking about all that I am thankful for.

The first thing I would have to write on my paper would be blood. Yes, blood! Jewish blood specifically! The blood of my savior Jesus Christ first and foremost that was shed for me for the remission of sins. And for the blood of CJ' s donor. When he came in for a spinal tap today we learned that his CBC's had 'bottomed out' and he would need to be replenished with another blood transfusion. When the blood arrived we were told that it was "directly donated" to him. Normally, we would not know whose blood he is receiving but we are pretty sure we know whose blood this is because his Aunt Shirl had just called to tell us she donated blood and had it directly donated to CJ. CJ called and spoke to her as he was receiving her blood and he teased her that her blood tasted good. She teased him that he is officially half Jewish now. I smiled as I thought Jewish blood has saved his life twice now! Once on the cross, and once in a blood mobile. I am thankful for blood!

The next thing I would write is that I am extremely thankful to spend this Thanksgiving with my husband and children. Each and every day I have with them is a precious gift. CJ's cancer has taught me to value each life God has blessed me with and each day I have with them so much more. And to drive the lesson even further home, the man who lives across the street from us is fighting for his life tonight after crashing his motorbike out front of our house a few hours ago. As we stood and watched the helicopter airlift him away, I was even more grateful for Chris and the kids. This getleman will not be coming home for Thanksgiving this year, and possibly not ever. They may never have the opportunity to spend another Thanksgiving with their loved one. As you sit at a table with your loved ones today, stop and take a moment to look around at each and every life represented. Thank God you have had this past year with them. Tell them you love them. Allow a fresh gratefulness to wash over you.

The last thing I would add to my list is that I am thankful for all of you. All of you who have followed CJ's story and prayed faithfully and earnestly on his behalf. I see the fruits of your sacrifice and labor first hand everyday. As I sat in the Pediatric Ambulatory today for 10 straight hours surrounded with overwhelming tragedy, sicknesses and devastating disease I was extremely grateful for how well CJ is doing with his treatments. After being frustrated about his illness last night, and everyone bathing him in prayer, his spirits we back up today and he was no longer struggling with sadness. I believe he is doing so well because he is being covered in prayer thanks to all of you. The nurses notice it, the doctors notice it and Chris and I notice it. Words can not express our deep gratitude for your love and support and friendship. Our family feels a deep bond with so many of you and we have never even met the majority of you. God has taught us whole new meaning of friendship through this trial.

As I look back over those three things I just expressed my gratefulness for, I realize that I am thankful for for those very things that I thought were obvious before. Faith, Family and Friends. Only this year, when I write it on that little slip of paper, I believe it will flow directly from my heart to my hand and settle on the paper in a whole new way.

A Thanksgiving Prayer to all of You.
"I have not stopped giving thanks for you, remembering you in my prayers. I keep asking that the God of our Lord Jesus Christ, the glorious Father, may give you the Spirit of wisdom and revelation, so that you may know him better. I pray also that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in the saints and his incomparably great power for us who believe. "
Ephesians 1:16-19

Tuesday, November 25, 2008

CJ Needs Prayer

I published a new post below but am following it up with this prayer request for CJ tonight. Although we still ask for the prayers we have requested for his physical healing and well being we are asking for prayer for his spiritual well being as well. He is struggling tonight with accepting his illness. This began when he came into my room tonight as I was putting the baby to sleep and asked to talk to me. He said, "Mom, I think I have never accepted that I have cancer but have just been going through it." I asked him what he meant and why he felt this way and he expressed that he just seemed to be doing it and it was like he was watching himself go through it. I talked to him a bit about how difficult it is to accept these sort of things even for mommy and daddy and that we accept it by trusting God with it and leaving it to Him. He seemed okay at first but I pushed further and asked him if he thought it would help to say out loud, "I have cancer". I thought it may get him over the hump but instead this lead him to start a whimpering cry and hyper-sensitivity to touch which then progressed to a defiant reaction to taking his medicine tonight. He has never complained or refused to take it until now and it was challenging emotionally for Chris and I. We had to really enforce it to get him to take it. While refusing to take it he said, "I don't want to be sick", which lead me to respond, "You are sick." This statement released the tears he seemed so desperately in need of shedding. He reluctantly took his pill and we are hoping he is just tired physically and a good night sleep will help. As I put out this request for prayer for his little heart to accept this and to trust in the Lord for strength, I can hear him whimpering and groaning and battling grief in the next room. I pray the Lord will draw near to him tonight even as he sleeps. I pray the Lord will strengthen and encourage him with the right words that I fail to have for him. Tomorrow morning I will take him to the hospital for his spinal tap. Please pray his counts to be up as well as his spirits.
Thank you for your prayers.

Show Me a Sign

One of the things Chris and I have struggled with is how many people have reassured us that CJ is going to be okay. From the very beginning, many people we knew, and many we didn't know would tell us this rather boldly. We knew sometimes people can speak carelessly in a time of grief but many of these people were solid in their faith and would not shower us with false hope or careless words. God had not given us that solid assurance but rather asked for a complete trust and surrender regardless. We are called to walk by faith and not by sight. Therefore we walked ahead with eyes of faith yet asking for the assurance others so vividly had been given. Some were given visions of CJ's back being opened up and God reaching in and scraping away the tumors. We actually had two different people in two different states completely unbeknown to them have the same vision. Other shared with us that the Holy Spirit confirmed it during their prayers for CJ. Others said they just knew. Over time, our faith increased and we began to realize we could stand boldly on God's promises to CJ whether they were given directly to us or others.

The temptation to ask for a sign has been with me from the beginning but I felt it foolish, selfish and immature in my faith to make such a request. I know God gave many signs throughout history to His people to reassure them. And I know he allowed Gideon to ask for a sign by putting out his fleece in Judges 6. But I also know it is written, "Do not put the Lord your God to the test," and Jesus Himself quoted this verse to Satan when tempted in Mathew 4. So I bridled that temptation, or so I had thought...Until I found myself struggling between these two concepts this week.

I was at small fund raising event for a elementary school down the street from my house on Saturday afternoon. I thought it would be a good idea to take Brett to get him out of the house and since it was right down the street and we could walk there we would still be close by. He was reluctant to go at first but had a great time once we were there. It was a small gathering and I immediately thought I made a mistake by bringing him because most of the activities there he could not do because of CJ's condition. There was a petting zoo I had to steer him away from because of the risk of carrying something to CJ. There were four bounce houses he could not go in because of the germs. But we walked around anyway and we got him some cotton candy. He dunked a police officer twice and he did get to go on the bungee jumper thing. Allie and I ate arepas and entered in a drawing for a TV, Camera and Wii because Allie has been wanting a camera. We saw neighborhood friends and just enjoyed the beautiful cool weather and being outdoors. There was a little boy there named Noah Sinko who is a Leukemia survivor. I just stood there and watched him play and climb and run. I was so encouraged by this because many of the nurses at the hospital remember Noah even though it has been quite a few years since he was in treatment. At the hospital they call him a walking miracle. I just kept staring at this little walking miracle and thinking I wanted my own miracle. I couldn't wait to see CJ running around like this.

Corey and Brett began playing in a little toddler area when the drawing began. Allie walked away to go listen to the numbers being called. I stood alone keeping an eye on Brett and Corey and waited for her to return. Maybe it was seeing Noah, maybe it was just being there without CJ, or maybe it was just a moment of weakness in my faith but for some reason as I stood there alone staring at the large crowd off in the distance waiting for the drawing to begin I laid out my fleece before God. I knew it was stupid even as I did it. I know God is in no way obligated to answer these types of desperate requests and although I tried to hold back the words, they just came. I said, "Lord, I have not asked you for a sign all this time. I know it is selfish of me to even ask, but if CJ is going to be okay would you please show me by letting our number come up in the drawing." I immediately realized this was foolish and selfish of me and I instantly prayed even more passionately than the first prayer, "Lord, forgive me for being so selfish. I know that was immature of me, I am sorry." I turned away and engaged my thoughts on Brett and Corey playing completely forgetting about the drawing.

A few minutes later, I saw a friend nearby answer his cell phone. Suddenly, his eyes met mine and he smiled. He said, "You just won the drawing." I felt like I got punched in the stomach. I hunched over and grabbed my knees with both hands for balance and had to grasp for air. My heart was pounding and I was thanking God that even in my foolishness and selfish request He responded to me. My friend walked over to me probably wondering at my reaction and I kept repeating, "You don't understand, you don't understand." I finally stood up and looked him in the eye and said, "I asked God if CJ would be okay that he would let us win the drawing. I knew it was wrong so I immediately asked forgiveness and forgot about it." My friend just looked at me. He could see I was shaken by this response. Then, Allie came walking up with a huge smile and a Wii in her hands. I told Allie what I did and she said, "Lets call daddy." When I called and told Chris what I did and what happened he cried too. We were so overwhelmed at God's willingness to draw near to us at this difficult time. Please understand that our joy at that moment had nothing to do with winning the Wii. We already own one! It is actually perfect that it was the Wii we won as opposed to the other items. That way there is no confusion about our joy over the answer. Just to give you a glimpse into CJ's heart, when Chris told CJ what we had won his first reaction was, "We can give it to a kid at the hospital." Oh how I wish that were my immediate reaction when God showers me with a blessing above my needs.

A little while later, before leaving the festival, I was standing with this same friend and his wife. They are precious to me. In God's amazing Sovereignty, he is also the friend I mentioned in my post titled "Wednesday, September 17th" who I have been praying for for over 4 or 5 years now. God has placed a strong burden on my heart for this individual that just gets stronger each passing year. And when I want to call him stubborn and give up, the Holy Spirit tells me to persevere. Suddenly, as I stood there with them I knew it was God's perfect plan that it was him who delivered the news to me that day. I could have found out many ways. Allie could have came running back, I could have overheard the loud speaker, someone else could have shouted. But no, his wife called his phone and it was he that walked over to deliver the news. As we were talking I told him that answer to prayer wasn't just for me, that was also for him.

Thank you God for your unbelievable, undeserved, uninhibited favor in my life. Just seeing You at work is worth every ounce of suffering. Thank you that you answer me even when I ask for selfish and faithless responses from You for my own comfort. May You be honored, glorified and exalted. May the eyes of my friend be opened to Your hand in his life. May he realize that his healing from his disease is even more important than CJ's because it has eternal ramifications. Amazed by your faithfulness, Dawn

Saturday, November 22, 2008

Struggling with Past, Present and Future

It seems like just when I think I have fully grasped and surrendered to the Sovereignty of God I find myself in a position that challenges my commitment again. I truly believe God's Sovereignty is something you need to have in place before you find yourself submerged neck deep in water grasping for air. And yet, I don't think you can fully grasp or surrender to God's Sovereignty until you are there treading water.

This week we were faced with many changes to CJ's protocol yet again. It is unsettling to hear the doctors discuss changes and then proceed to change the changes. You begin to wonder how confident they are of what they are doing and where the final decisions come from. Believe it or not, when your child is in a clinical trial he can actually be placed on an arm of that trial based on the flip of a coin, so to speak. Then the outcome decides what was the best form of treatment. CJ is not being placed on a trial but he is being moved around from different treatment arms for different phases of his treatment based on what has proved to be the best outcome of previous studies. They reviewed all the changes with us and mentioned that all the changes are also reviewed with the top Lymphoma doctor in the country. Because the top childhood cancer groups joined forces back in 2000, they all share information to help as many children as possible and advance treatments. This top Lymphoma doctor confers with them on CJ's case and makes her recommendation. For some reason, when I was told this I pictured this austere woman sitting behind a grand mahogany desk looking at a file that represents the life of my son. It is unsettling on the surface and yet in deep in my core I know it is God maneuvering CJ onto the best possible position for the best possible care. It is challenging me to trust God with the future of CJ's treatment regardless of how many changes may occur.

One of the things CJ has encountered in these changes are two spinal taps being added on to the tail end of this phase of his treatment. One took place this past Thursday and the next will be this coming Wednesday. This seemed excessive to me and I was worried about what the implications or possible risks of this could be. God, knowing my fears about the spinal taps and the far away doctor behind the grand mahogany desk, was kind enough to alleviate my fears by prompting our nurse to tell me how two main things have changed the outcome and survival rates of childhood cancer. She said one was the joining of the childhood cancer groups because they began to share information and were able to get the best possible treatments to their patients and the other was the introduction of spinal taps in chemotherapy treatment. I was standing over CJ waiting for him to wake up after his spinal tap on Thursday when our nurse proceeded to tell me this for no apparent reason. She has been a nurse for over 30 years and has seen many changes. She explained to me how your body has a blood brain barrier that protects your brain from infection. For example, if you are stung by a bee or bit by a venomous animal your body has a natural barrier that protects the brain from the poison. This same barrier was protecting the brain from the chemo being put into the bodies of cancer patients. Therefore, the cancer would be healed in the body but attack the brain and therefore the child would relapse. But now that they can inject the chemo directly into the spine with the spinal tap the chemo goes directly to the brain and around the barrier. So there I was standing there hearing how my two main fears were actually factors in increasing the survival rates for childhood cancer. It challenged me to trust God with the present circumstances I find myself in whether I understand them or not.

Then, last night I found myself challenged to trust God with the past. It was a difficult night for me. I am not sure why, but I had a flood of memories that momentarily sent me spiralling towards the wasteland of what-ifs. It started when I sat down to check the blog and I saw the picture I loaded up on the family update. I clicked on it to enlarge it and sat and stared at CJ's face for a long time. My heart was aching. That picture was taken at a church conference we attended two weeks before his diagnosis. It was a weekend that CJ struggled immensely with pain in his stomach and back. As I stared at the picture, I allowed the memories of the weekend to flood over me. I remembered how he suffered through every meal. He was never able to complete a meal with us as a family because he always had to excuse himself to go back to the room due to stomach pain. He was in so much discomfort and I did not do enough to comfort him. I remembered how we had amazing worship times before the teachings and I would glance at CJ and he always seemed to have a pained look on his face. I was worried about his spirit because of his countenance not even realizing that he was in pain from having to stand for 45 minutes straight and that is why his face was downcast. I became angry with myself for not realizing this and telling he could sit down if he was uncomfortable. As I continued to stare at the picture, I remembered one specific worship ministry time that he felt lead to walk up to the altar for prayer. Chris and I walked up with him and he prayed with our pastor. I was praying for his anxiety thinking that was were the inner struggle lie. Chris and I were agreeing in prayer with our pastor as he prayed earnestly for CJ. But then, after our pastor said amen, CJ suddenly turned around and threw himself on his knees and put his face on the floor in front of the altar. As a mother, my heart burst open at that moment. It was completely unexpected and uncharacteristic of CJ. I don't presume to know what took place at that moment between him and God but I believe God was preparing CJ for this. All these emotions flooded me from staring at a picture on my computer screen. In my grief, I made my way into my room where CJ was reading. I cuddled up beside him and told him, through tears, once again, how sorry I am that I did not do more and did not understand his pain. He held me and said, "It's okay mommy." I went on to curl up with him and fall asleep in his arms as he read. (The roles are really reversed around here aren't they? I think I seek forgiveness from my kids more than they ever have to seek it from me!) Anyway, Chris woke me up shortly thereafter to put CJ to bed and I went back to bed thinking that was the end of it.

But it wasn't the end. I woke up at 4a.m. with a flood of memories again. This time they went further back. At first, I remembered a Sunday morning service early in the year when CJ had begun to struggle with fear and anxiety. During worship, I saw my pastor begin to leave his seat. Although we had only been at our church for just under a year then, I could not personally remember a time my pastor just suddenly left his seat during the worship time. He had an expression on his face that seemed to me to say he needed to do something at that time. I could almost sense the surrender in him to obey regardless of the odd timing. Somehow, my spirit sensed it had to do with CJ. At first, I scolded myself for this selfish thought, realizing it could be anybody or anything, but when he turned down our aisle and laid his hands on CJ I began to cry. He prayed earnestly for CJ and I was so grateful at the time. But as the memory flooded me at 4am this morning, I began to question why I did not realize then that something more was wrong. I started to ask myself why I didn't question why the Holy Spirit lead my pastor to leave his seat during worship to pray for a 9 year old boy. Shouldn't I have known something more. If I would have prayed more earnestly or listened more intently wouldn't I have realized.

Then as I lay there struggling, I remembered another pained memory. This one came sometime in late July or early August when my sister from Gainesville called me out of the ordinary at 7am. She did not know much about CJ's struggles at the time but she immediately asked me, "Is CJ okay?" I thought this was a strange thing to ask me at 7 a.m. and being the private person and I am (was) I curtly replied, "He's fine, why?" Of course, I knew he wasn't 'fine' but the way I saw it was that it was my families private business and for personal reasons I was not about to share CJ's story with everyone. (That seems kind of ironic to me now that my heart has been split wide open for all to peer into and CJ's story is for everyone.)

Anyway, she went on to tell me rather earnestly that she had a terrible dream where CJ was in some kind of pain or trouble and kept calling out for help and she couldn't get to him. She said it terrified her because she had never dreamed about CJ before and it was very real and intense. I assured her CJ was fine and said thanks for calling. I never really questioned the significance of that phone conversation. I should have thrown myself face down on the floor and sought understanding. I know the biblical significance of dreams when they are lead by the spirit. It did not take much common sense to know that dream was of significance for CJ.

So I lay there in bed replaying the phone conversation over and over; seeing my pastor in my minds eye leave his seat and praying over CJ; remembering CJ throwing himself face down at God's mercy. I was drowning in despair and guilt and reached over to cling to Chris. He woke up and being the amazing husband, friend and leader that he is, he gently walked me through each scenario reminding me of God's perfect timing. I cried, we talked and then we prayed. As we were falling back to sleep this morning at 6am, God whispered to my heart that all those things in the past that were causing me despair were not put in place to prompt me to seek answers but to prepare my heart for when He chose to disclose His plan for CJ.

Then His peace washed over me anew and I surrendered to His Sovereignty again. Oh, please hear me when I say we don't have a God that is a hands off kind of God. Don't believe the lie that says He created and then stepped back to let us grope our way through life. This week He laid His mighty hands on me afresh and reminded me to trust Him with the past, the present and the future.

Please pray for CJ to be placed on the perfect treatment plan tailored by God for him. Please pray that all those who come across his file and make decisions regarding his care will be enlightened by God's Sovereign prompting. And please pray for Chris and I to surrender our past, present and future to God even when we are called to walk by faith and not by sight.

Wednesday, November 19, 2008

Family Update and Payer Requests

(Family Picture Taken in September -two weeks before diagnosis)

When we first received the diagnosis of cancer for CJ, I immediately remembered a friend who had recently battled breast cancer. I remembered the news of her cancer spreading fast and her saying she felt the need to be selective about who she shared the experience with. Who she 'allowed in' so to speak. I understood, agreed with and respected her decision. I was blessed to be of those she allowed in. I share this with you to say that in my overwhelmed state of receiving the diagnosis for CJ, I told God I was going to be selective too. I decided I would walk through this selfishly choosing who I would let in and what was best for me. I knew as soon as I said it something was amiss. Little did I know at that time that He would be calling us to live this out in the open before the world. I could not have fathomed doing this and putting our lives out here like this at that time. I assure you it has been selective, but it has been Gods select, not mine! We are amazed at how many people CJ has touched and thankful for those of you who have prayed for us and for those who have shared with us how this has affected or encouraged you. Your testimonies cast light on the mountainsides as we walk through this dark valley, and it draws our attention upward.

We have been asked by many of you about our family and the prayer needs for each of us. We are humbled that you are willing to pray for us as we battle this cancer in our home and in our lives. As most of you know, we are a homeschooling family of 6. Alibrandi is our oldest and only daughter who is 12. CJ is 9, Brett is 6 and Corey is 1. Our biggest challenge as a family has been trying to balance the needs of each child while still making the right decisions for CJ. We are trying to maintain a sense of normalcy in all of this, yet coming to realize that we have a new 'normal' and it is just taking time to adjust to it. CJ's health concerns require much of our attention but we also have concerns about the other three children. We have to be in tune to how this is affecting them, how to discern their needs and provide them with a sense of stability throughout this ordeal. We have been offered all types of resources, programs and counseling to assist the siblings. This only reiterates to us how damaging this can be for some families. We are learning that many children suffer life long and sometimes delayed symptoms as a result of this. We are grateful for all the programs available to us and may find ourselves taking advantage of some of them in the future but we strongly believe our greatest resource in this is prayer. So we humbly yet boldly ask for these specific areas of prayer for the siblings of CJ as well as ourselves.
Alibrandi has been a complete blessing to our family. She is everything I have ever hoped to be and she is only 12. She is God fearing, obedient, quiet, gentle, honest, faithful, submissive, pure, and silly! She is a product of God's amazing grace in my life and evidence that He gives you way more than you deserve. Her faith and witness and dedication to God's word astound me. She has faithfully read God's word daily for four years. Daily for four years! She has never missed a day! That is incomprehensible to me and I live with her. I sometimes look at her and think, "Who is this young girl and where did she come from?" Certainly not from some broken vessel like me! I was always thankful for her but I am even more thankful now. I remember once wondering why God gave me a girl first. I thought it would be good for her to have an 'older brother'. I don't question anything anymore. His ways are perfect and beyond figuring out. And having her through this trial has helped our family immensely. She never complains about anything we ask her to do. She completes her school on her own and on time. She is a huge help with her 3 little brothers and has been so kind to CJ. She has faith in his healing and has a quiet trust in God I wish I could grasp. Although I trust in God, mine is much more vocal and I seem to wrestle for every ounce of ground I gain. She just accepts and steps forward. The main thing I sense in her at this time is the need to do some of the things that she enjoys outside the home. One of the things she is passionate about is horses. Therefore, we have tried to be intentional about taking her out to be around horses whenever possible. This provides her with a form of release and she is able focus on something other than school and doctors appointments. My prayers for her are endless as my only daughter but I would ask for specific prayer for her that she would be open with us about her needs as they arise and that she would be strengthened as her responsibilities have increased due to this new 'normal' we are experiencing.

Brett is our 6 year old. Although Brett is our fun loving, carefree, non-stop, playful child, he seems to be struggling more than any of the other children. When we first settled back home from the hospital he had long bouts of crying tears that just flowed and flowed. No explanation, just tears and aching sobs. Chris and I just sensed a need for him to 'get it out'. He is at a tender age that is too young to fully grasp everything that is happening, but old enough to know something is wrong. He hears the conversations, hears the prayers. sees the tears and then has to comprehend all he takes in. He told me recently he did not want his brother to have cancer anymore because he wants to be able to play and wrestle and do all the fun things they used to do together. The changes in our home and lives have been more of a noticeable disruption to his routine than any of the other kids. The crying spells have eased but we still see he is easily overwhelmed and has difficulty communicating what he is feeling. Therefore, our prayer requests for him would be that he is able to communicate effectively all that he is feeling even if he does not understand it himself.

Corey is our busy and engaging 1 year old who needs constant supervision. He is in the full throws of obedience training at this age and that takes time, focus and patience on my part that is not as available as it was for the others. My prayer request for him would be that he would have an obedient spirit and a patient mommy. I must add that as challenging as he is, he is an unbelievable gift to our family at this time. He has the luxury to not have a clue that his brother is sick and just goes about life as a normal one year old. It is a blessing to have this little person who is clueless and carefree in regards to cancer in our home at all times. His ignorance is like a breath of fresh air when the tension sets in.

CJ has done amazingly well throughout this beginning phase of his treatment. We credit that completely to the Lord and to your diligence in prayer for him. He is able to complete his school work and his devotions and spend time enjoying the outdoors when his energy level allows. We have seen an increase in his obedience as well as a more playful spirit. We realize much of this has to do with not being in the amount of pain he was in prior to his diagnosis. Our hope and prayer is that he would remain strong and pain free. Our prayer needs are for continued healing of the cancer cells and continued health and protection against illness. We have recently become more aware about the risk to his internal organs from all the chemo he is receiving so we ask for specific prayer for his heart, liver and kidneys to remain unaffected and protected from the chemo. Please add this specific request to your prayers for CJ.

Chris is the amazing leader and provider of this family and home. He is my best friend and has been the love of my life since I was about 9 years old. It took him about 10 extra years to catch on but he finally did. He is the greatest gift God ever gave me besides giving me his own Son. One saved me from eternal death and the other from self destruction. Any and every good thing produced in me has come from those two men. He has an amazing burden on his shoulders in the area of responsibility to leading a wife and shepherding four children and I sense that it has increased tremendously since CJ got sick. My prayer for him would be that he realize the burden rests on God and not him. That he would always remember that God's yoke is easy and His burden is light. It is only when we try to rest it on our own shoulders that it becomes too heavy. In light of a phone call he received from the doctor today, I would also ask that you pray for his wisdom and discernment in decisions that need to be made in regards to CJ's treatment. The phone call notified us of more changes being made to CJ's treatment plans including squeezing in two more Spinal Taps and Chemo injections in the next 10 days beginning tomorrow. As well as a possible change in protocol for future phases of CJ's treatment. We pray these changes are God's leading and will bring about a better end result for CJ in regards to recovery and relapse as well as protection from toxicity. We ask that God give us peace in accepting these changes and wisdom to know when to resist them.
As for me, I just pray that God would equip me to be the mother and wife He would have for this family and home. My life is at His disposal. I have always dreamed that one day I would bow before Him and hear ,"Well done my faithful servant." I can never seem to add the word 'good' in there as the scriptures do. The word good does not belong to me, but if I could just stand before him faithful........Dayenu. (it would have been enough).
Thank you for your prayers. Your prayers for our family have surrounded us and hedged us in on all sides. I used to think the calm I felt was the eye of the storm but now it seems it is the wall of prayer that is surrounding us, strengthening us, and protecting us in the storm.

"Now, my God, may your eyes be open and your ears attentive to the prayers offered in this place."

2 Chronicles 6:40

Thursday, November 13, 2008

CJ Update..... And a Change in Protocol

After a week of rest from all chemo this week to allow CJ's blood counts to come back up we are back at the hospital for a scheduled overnight admission. Due to the decision that one of us needs to be with our other kids whenever possible, Chris was staying home with them today. CJ and daddy had a difficult time separating from each other this morning as they have been spending a lot of time together lately. Daddy has been sleeping in CJ's room each night because our 6 year old Brett has had a cold and we wanted to keep them a little distanced. This has allowed Chris and CJ to talk and have some special time together. It also allowed CJ the opportunity to ask his dad a serious question. CJ was seemingly sad last night and Chris asked him what was wrong. CJ said he had a question but did not think daddy had the answer. Chris pursued it and eventually CJ said, "Why do you think I got cancer daddy?" CJ was right, his daddy did not have an answer but through tears he encouraged CJ that God did have an answer and we could trust God with that answer even if we don't know what it is yet.
Sometimes we don't realize CJ is thinking about it as much as he is until he shares what he is thinking with us. The other day he told me that he wondered why God would allow a boy who loves to be outside and loves to play sports so much to get cancer instead of a boy who loves to be inside and play video games. Little insights like that show us just how much he actually ponders the whole situation. Thankfully, he always seems to ponder everything in light of God's Sovereignty and seems to grasp that concept fully. Honestly, even if he never gets an answer as to 'why' this happened but he grasps the Sovereignty of God, he will be just fine.

Anyway, as I was saying, these two kindred hearts had a hard time separating this morning but once I pried them away from each other, CJ and I were eventually off and on our way. CJ was scheduled to have a spinal tap to check his spinal fluids and a chemo injection into the spine. My mother eventually came to see us and was with me during the spinal. She got such a kick out of CJ as he was put to sleep. He looked straight at her and gave her a wink not a split second before his eyes closed. It was priceless. This was my 4th spinal tap so I am getting used to seeing CJ put to sleep and immediately seeming fragile and small once they curl him up on his side and prepare his back for the needle. But having my mother in the room for the first time allowed me to see it again through fresh eyes and reminded me of all the apprehension I felt the first time I stood and watched this procedure done to my child. Seeing how tense she was made me realize how relaxed I was in comparison and I thought...I can't believe you actually get used to this after a while. I bowed my head to pray and felt my mom searching for my hand so I held hers as I prayed for CJ. I raised my head to watch CJ as I prayed and then the doctor said, "It's okay to look grandma, see the spinal fluids look clear." My mom hesitantly raised her head and watched the remainder of the procedure through squinted eyes. This reminded me of how I squinted the first time I watched this procedure as if somehow I could take in less of what was happening if I squinted. CJ slept off the remainder of the medicine as we stood over him saying how thankful we are for how well he is doing. When he woke up I said, "Hey there, you are finally awake." And he said, "I've been awake, I was just too tired to open my eyes."

He is receiving chemo through his port tonight and tomorrow. He will be released sometime tomorrow afternoon(Friday) and continue on chemo via home health for the weekend followed by another round of home health chemo in a week for four more days. At that time, we will be at the end of phase 2 and entering into phase three. Initially, we were told CJ would have high doses of a chemo drug called Methotrexate during phase four. It was going to be such a strong dose that it would require a counter drug to salvage good cells and also require 3-4 night stays each time it would be administered. This would have been repeated four times over 50 days. Today the doctor explained to me that we will be placed on a new arm for this phase of CJ's treatment. I won't go into clinical trials and studies and the many arms of those studies at this time because it is an overwhelming amount of information. But I will say we are extremely grateful for those studies and all the children and families who were in them in order to determine what treatment would be best for future patients. When a child is part of a clinical trial, that child does not necessarily benefit from the study being done but the children who come along in the future surely do. CJ's treatment would definitely fall into that category as one who is benefiting from those who have gone before us in these treatments. We are extremely thankful for that!

What does this have to do with CJ? Well, we were told today that studies show that the high dose Methotrexate children did not fare any better than the gradually increased dosed children. All Leukemia kids have already been switched over to this new protocol for this phase of their treatment. CJ"s doctor recommended that although CJ is Lymphoma he should be too. What difference does this all make? Well, thanks to this change in protocol we will no longer be in a phase that requires the high dose and therefore will not require the countering medicine or the 3-4 night stays at the hospital to administer it. He will now receive it outpatient once every ten days for 50 days and be able to go home that same day and recover at home in between doses. His dose will gradually increase as his counts and health allows. This is extremely good news for our family as it reduces the amount of time spent in the hospital and that we are all separated.

Unfortunately, even after the week of rest to allow CJ's blood counts to come back up, his hemoglobins were still borderline. They will check them tomorrow morning and if they have not come up he may need a transfusion before he is released. We are praying for adequate counts and yet thankful for the means of replenishment available to him through transfusion if necessary. We are praying for sustained counts and yet prepared hearts for whatever is best for CJs long term health. We are also asking for prayer for CJ's quick recovery to a head cold he has come down with. We are asking that it not interfere with his treatment and that his body be able to recover quickly from the cold without complications.

Thank you for your continued support of our family and most importantly your prayers for CJ. We are so thankful this blog allows us to involve you in his treatment as many of you have told us you feel like you are able to go through this with our family because of the blog. We are extremely thankful for this avenue of communication but most importantly that it allows us to immediately get our specific prayer requests out to all of you who are battling through this with us in prayer!

FURTHER UPDATE: CJ is just finishing up his blood transfusion and already feeling more refreshed. He received it well with no complications or reactions. We are grateful for this means of replenishment and for whoever the donor is that provided this blood. We are looking forward to going home within a few hours.