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.
Monday, December 29, 2008
The Other Side
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.
Friday, December 19, 2008
A Heart Full of Faith
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.
Thursday, December 11, 2008
CJ's Star
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.
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 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.
Sunday, December 7, 2008
Sharing CJ's 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
IMPRESSION:
Wednesday, December 3, 2008
Links to Newscast
News Clip: http://cbs4.com/video/?id=66727@wfor.dayport.com
Jim's Blog is... http://pod08.prospero.com/n/blogs/blog.aspx?webtag=WFOR_JROBINSON
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 www.cbs4.com/mojo 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 http://pod08.prospero.com/n/blogs/blog.aspx?webtag=WFOR_JROBINSON 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.
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
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.
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.
Show Me a Sign
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
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.
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.
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.
"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.