Friday, October 31, 2008
Thursday, October 30, 2008
CJ completed his first round of home health chemo. By day four, CJ was pretty tired and a little nauseous from all the medicine. It was the first time he was sick enough to keep him in bed and it saddened me to watch him struggle with an upset stomach. It reminded me of how he was before he got diagnosed and I relived much of those awful days. I desperately wanted to just spend the day cuddled under the covers with him and read and talk and nap and giggle and apologize and do what I didn't do then, but with three other children, my wants and realities are in conflict. Thankfully, by Tuesday and Wednesday the cool breeze moved in. I opened the windows to let in some fresh air and by then CJ had recovered and was able to enjoy the beautiful weather in the back yard. What a great and refreshing gift from above! Thank you Lord! We spent the next 3 days outside as much as possible enjoying it. He spent time in the hammock reading, played with his siblings, and was able to enjoy the company of family since we could sit out back and visit in the open air. It was great to see him active and I can only imagine that it helps rebuild his strength. We did school, did chores and tried to function as normal as possible throughout the remainder of the week. Chris is back to work and that helps with the routine of things. I really feel for him because I can see his obvious struggle every day as he prepares to leave. He wakes up every morning and then goes into CJ's room and cuddles up and prays for him. Then I have to tear him away and tell him to go work. He says driving away is always the hardest part. But once he gets there and gets involved in the cases he is working on and talks with his co-workers, he feels better. I know he prefers to be here but it is important for our home to run as normal as possible on the days we don't have any appointments or chemo. We have an appointment tomorrow (Friday) morning for CJ's blood counts and to have his port re-accessed so he can start another 4 day regimen of home administered chemo. Please pray for his counts to be positive and for our home health to go smoothly.
The home health did go smoothly the two days we had it other than a moment when the nurse could not get blood return and we began to wonder what that would mean. But it finally came and he was able to receive his medication. I have to honestly and humbly and embarrassingly confess that although I prayed for favor with the home health nurse and I asked God to send one of His people or someone who needed to hear about his Son, as the time drew closer, I got more and more nervous about who would be coming here and what kind of person he or she would be. I started to obsess over whether they would be clean and kind, experienced, speak good English and communicate well. I must confess my failure that when the home health nurse called to schedule the appointment I immediately was disappointed when I heard a strong accent and had to ask him to repeat a couple of times what he had said. He wanted to come right away but Chris was still at church and I knew he wanted to be here so I told the nurse to come a little later. When a little later turned out to be much later it allowed me all day to judge someone I never even met based on an accent and a bad connection over a cell phone. I justified this sin by saying I was just worried about CJ and what kind of care he would get. As if an accent really determines the level of care you receive! Thankfully, God sweetly but sternly dealt with me even before the gentleman ever came to the door and I am glad for it because when I opened the door to a friendly, warm, islander, with a beautiful accent wearing a simple gold cross I was definitely dealt with! But oh, how God keeps showing me the depths and despairs of my own heart. "Create in me a pure heart O God and renew a steadfast spirit within me!" Psalm 51:10
Now that CJ's update and my confession are out of the way, I want to share with you something that happened as CJ and I watched the world series together this week. We were watching the highlights of the game when we saw a special segment about a young boy who "lost his battle with cancer." I tensed up as we watched the piece wondering what CJ was thinking and feeling as he sat next to me. Now, if I was perfectly honest with you, my first instinct as a mother whose son is battling cancer when I watched this interview was that I wanted to know what form of cancer this boy had. They never mentioned it other than "he lost his battle with a rare cancer". Knowing CJ's is also a rare cancer, I waited for the piece to end and then made my way to the computer and typed in the boys name..... John Challis......as I typed, the first thing I noticed was the initials. J.C.... C.J.....J.C...interesting. Then I scanned the articles relating to him searching for some diagnosis beyond the word 'cancer'. I kept thinking thoughts like....this has to be a more serious form of cancer. It must be more rare than CJ's... Why in the world would I find comfort in knowing that this boy had a much more serious form of cancer than CJ? I needed an explanation for why this boy "lost his battle" as they worded it. I kept reading and for some strange reason I kept thinking if I read long enough or found just the right article about him it would end different and he would be okay now. I started to question my own twisted thinking and yet I felt compelled to keep reading.
As I continued to read the articles searching for a diagnosis I noticed more similarities. This boy also had a very difficult time accepting that he would no longer be playing sports. Again I was reminded of CJ. I read that the the boy's story spread throughout his community and beyond and it again reminded me of CJ. I kept searching for his diagnosis and that's when I saw the boys jersey. No. 11. I just stared at it and thought, 'no...that can't be right. That's not CJ's number'. I sat glued to the chair staring at the screen willing the number to change. Finally, when I could stand it no longer, I got up and went to CJ's room. I reached into his closet for his jersey. I held the jersey away from me at first and then I hesitantly turned it around. No. 11. I can't explain what I thought at that point. I told myself.. it's just a coincidence Dawn, stop over thinking everything. But I have so trained myself to immediately pause and ask God what he is trying to tell me or show me whenever the word coincidence pops in my head, that I again questioned what God was trying to tell me in this. I showed Chris the jersey who had also been reading the article over my shoulder at the time. He was obviously upset and walked away to compose himself. But I kept reading and wondering what the message was in it for me. Why did I have to see this story? Why all the similarities? My mind kept coming back to the line that said this young boy, "Lost his battle with cancer". It kept bothering me but I couldn't put my finger on it until I read in the article that John was asked if he ever wonders why this happened to him, and he said, "I think I figured that out. God wanted me to get sick because he knew I was strong enough to handle it. I'm spreading His word and my message. By doing that, I'm doing what God put me here to do." I wonder how many people can actually say they know they are doing what God put them here to do? John also said, "Life ain't about how many breaths you take, it's what you do with those breaths." How can those words be from a boy who "lost his battle". They don't sound like losing words to me.
As you can tell, I am really beginning to hate the term "lost his battle with cancer". It bothers me because it implies that physical survival is the only determining factor that decides whether you win the battle. Do you automatically win the battle if you survive regardless of how it affects your life? Can you survive physically and yet still lose the battle if it doesn't draw you closer to the Lord and His will for your life? Can you survive and still lose the battle if God receives no glory for your healing or recovery? Do you really "lose the battle" if you stand before the Lord and hear, "well done my good and faithful servant." That is true victory isn't it? Surrendering your life to God for His use sounds like victory to me. I would much rather know I accomplished what God put before me than that I lived a long life never knowing what my purpose was. But this isn't me battling cancer, this is my son. Can I confidently say the same for him? I had to pull out the journals I have kept for CJ since he was born and re-read them to encourage myself after reading this boys story. It reminded me that I have offered this child to God from the very beginning and it helps me to trust God with this situation. Here is an excerpt from an entry I wrote in June 2007 before CJ ever began to struggle with any of this:
"...I am excited to see what God does in your life.
I truly believe He has great plans for you.
By great, I don't mean the worldly definition of great,
It may not be great in the world's standards.
It may include hardships and even suffering but if you follow
May your goal in life be to stand before our Holy Living God and hear,
"Well done, good and faithful servant."
I love you, Mommy"
"But thanks be to God. He gives us victory through our Lord Jesus Christ" 1 Cor 15:57
Friday, October 24, 2008
We arrived at the hospital main entrance at 9am as previously instructed to 'check in' for our over night stay. CJ and I valeted the car, hauled our heavy bags over my shoulders, followed the construction detour at the main entrance until we reached the make shift admitting desk not realizing then that we had just entered the unforeseen obstacle course. Ten minutes into the question and answer phase of check in, the clerk told us she could not find the orders and we would have to go to the doctors office first and have his blood counts checked and then the doctor would write the orders. So we lugged our load and walked the block to the doctors office building and up to the 5th floor. This clerk looked less perplexed than the other but also informed us we were in the wrong place. We would have to go downstairs, take the hall to the very end and 'check in' before coming to the office to 'check in'. So we hauled our load again and continued to follow the obstacle course. CJ was most concerned with me of course, and kept asking if I was okay. That is so like him. He's the one on chemo who is probably exhausted doing all this walking and he is worried about me. We decided to make the best of this and joked about the fact that instead of chemo for him we would be checking in for back surgery for me. He thought that was funny.
After ten minutes of deja-vu with this clerk, answering the same questions from earlier, we headed back up to 'check in' at the office again. CJ got his blood drawn, they offered him candy and off we went to wait for the results. At this time, I began to think it may be wise to start asking questions in advance and not wait for instructions. So I wander out to the desk and ask about today's procedure and what to expect since we still had not even checked in to the hospital. That is when they realize he was supposed to have another spinal tap today and this requires you to be put to sleep which requires you to not have eaten any candy. They scramble to figure out what to do and I begin to wonder how this got overlooked. During this process I am relaying everything by phone to Chris who is reminding me to ask more and more questions which lead to more and more discoveries of things overlooked. Like the fact that no one set up his home health care for him to receive the final two doses of chemo at home this Sunday and Monday. I immediately realize this will mean an extended stay in the hospital if they can not set it up in time. Now I am really wondering how this all got overlooked.
Re-enter the obstacle course.....after arranging for the social worker to try to set up the home health we are sent to 'check in' at the hospital again. We load up our bags and make the long haul back to the hospital and down the long halls again. When the clerk looked at me confused, I almost laughed out loud. Not at her mind you, but at the situation. She stares at the paper for a minute and then sends me to 'check in' down the hall. After answering the same questions for the 5th (or was it the 6th) time (I lost count and I actually started to wonder if I was absolutely sure my son was Christopher Thomas George Jr. date of birth 4-5-99)...anyway we were then sent upstairs and settled into our room. I have never thought a hospital room would be a welcome sight before and I said it out loud. CJ thought this was funny because we were excited at the sight of blood last week and now we were excited to get a hospital room. Life really is changing fast!
Fast forward a few hours, a few phone calls and a few tears and here we are: in the hospital room, with a rescheduled spinal tap set for tomorrow morning at 8:30a.m. Followed by a discharge in the late afternoon to switch over to home health. Chemo will be delivered and a nurse will come and administer it in the home multiple times this month. That will be a nice change from the constant driving to and from the hospital. It will also be a nice relief on the gas bill! Please join us in prayer as we ask the Lord to show us favor in the nurses He sends to our home. May they be his very hands and feet as they deliver and administer the chemo. And may we be wise to discern which ones he is sending to our home to encounter His love, not just give it.
I wanted to share the lesson I learned from CJ today.
At one point, CJ had left the hospital room to get a snack from the nourishment room across the hall and when he came back he said, "Mommy, there was a lady and her little boy being taken to a room and she had the exact same look on her face that you did when we came in here for the first time. She looked like she was in shock." He felt so bad for her. I kept thinking, how does a 9 year old boy who has had a really long day and is going through his own struggles see and read the face of a grown woman he does not even know and realize how deeply she is struggling.
Later, when I was leaving the hospital this woman happened to be going downstairs at the same time so I practiced what I am learning from my 9 year old and I looked at her. He was right. She had that look in her eyes. I introduced myself and told her that my son saw her and was concerned because he recognized the look on her face. I told her we had that same look on our face a little over a month ago. I wanted her to know that we understood her pain and that it would get better. It would get easier. I told her the ground would come back up. I couldn't believe I was standing there encouraging another mother so soon and I thanked God for the opportunity. Seeing her flooded me with reminders of the emotions that attempted to suffocate me in those early days. I prayed silently that God would be with her and surround her with His love. I remember hoping she had the support and love of friends like we have had through all of you. Then I got in my car and was stunned that CJ was right. And once again I said to myself, "I really need to be more like CJ."
Wednesday, October 22, 2008
The tumors are "Nearly Completely Gone"! Well, how do you like that? That is the answer we got when we called the doctors office yesterday to find out what the scans revealed. The tumors are "nearly completely gone." I had to laugh because it sounds so funny. Nearly completely! It sounds like an oxymoron. After all the medical terminology and big words we have heard throughout this process, we are told they are 'nearly completely' gone. I asked the secretary who was relaying this message what that meant as far as percentages or location of the tumors. Are they all completely gone except a little bit in one spot, or are they all there but just nearly gone? She did not know as she was just relaying the message from the doctor. For me, it made no difference. Either way, this is good news, because it confirms that the chemotherapy is working and the tumors are shrinking; nearly...or....completely. You just have to smile at that! It was just so fitting after such a long day on Monday and God asking me to "trust Him" over and over. It really did not matter what they called and said, I had already decided it was completely in His hands. And it is! Not nearly, but completely!
CJ has a hospital admission this Friday for an overnight stay. He begins the second phase of chemo which introduces a new set of medicines which means a new set of side effects. One of the medicines is very strong and requires IV fluids to be administered for 24 hours and monitoring so that is why he will be staying overnight. This will take place twice in this phase. Our prayer needs for this phase of the chemo are that he will handle these new medications as well as he has handled the first ones. Pray for continued sustainment of his CBC's (complete blood counts)and protection against infection.
We look forward to seeing the doctors on Friday or Saturday while we are there and going over the scans together. At that time we will be able to relay a more accurate result but for now we are rejoicing in God's blessing and invite you to rejoice with us. As we have suffered, you have suffered; as we have prayed, you have prayed; as we have mourned, you have mourned; and now as we rejoice, you rejoice!
Monday, October 20, 2008
CJ was sad on the way to the hospital this morning. With a little probing we were able to determine he was struggling with how much he has changed physically. CJ walked past a mirror early this morning and said softly, "That doesn't even look like me." My heart squeezed in anguish for him. I immediately felt sorry because I had been struggling with how much he has been changing physically and the effect it was having on me, but not even thinking about how it was affecting him..........conviction, confession and then the sweetness of forgiveness washed over me. Thank you Lord! We reminded him that "The Lord does not look at the things man looks at. Man looks at the outward appearance, but the Lord looks at the heart." That seemed to relieve his struggle for the time.
He also revealed that he was nervous about the scans and wondering why he had to go through so many tests again and again. Chris began praying for him as we drove. Chris's voice soothed me as he began praying for CJ's strength and thanking God for the medicines He has provided for our sons healing. He asked God to show favor and wisdom to anyone who so much as looks at or touches CJ's file or comes across CJ's case for any reason. His prayers renewed my strength and I began to pray that the tests would run smoothly and that He would even show us favor in timing and scheduling and allow things to move quickly so CJ would not have to wait and be nervous for long periods of time. I asked God to equip the nurses and technicians and show them favor as they treated CJ. After we prayed we encouraged CJ with examples of those God allowed to face trials in order to prepare them for His work. We reminded him of David and how he faced a lion and a bear while out in the pasture tending to his sheep. We sometimes forget to think of these people as real life people experiencing real life fear. I guarantee you David was scared! But he persevered and that trial built his strength, character and trust in God. All those trials were used to prepare him for the day he would stand before a giant, with just a sling and a stone. David would never have had the courage to stand before Goliath, had he not already faced a lion and a bear and learned to trust his God.
We arrived at the hospital and were sent upstairs where we immediately found out that CJ needed either and IV or to access his port to administer the contrast for the CT Scan. This was disappointment number one because we did not expect this and did not put the numbing creme on CJ beforehand. CJ was grieved and began to cry. We chose to access the port thinking it would be less painful and the lady offered to use a spray to numb it. (Do you know that feeling when you know things are going wrong but you can't put your finger on it? That is how we felt the whole time she was getting ready to access him.) The spray she used began to burn him as the needle pushed through. Then things went from bad to worse. The nurse used the wrong size needle and could not get the port to flush properly and could not get a blood return. She had to remove the needle and send us downstairs to pediatric ambulatory to try to access his port there. I could feel my frustration and disappointment growing. I kept trying to stuff it down as we entered the elevator. "Who are you disappointed with Dawn? " I didn't answer. Stuff it down. Ignore it. Again...... "Who are disappointed with, Dawn?" "This isn't a good time Lord. I am in an elevator, we'll talk later." Again......."Who are disappointed with, Dawn? The nurse or Me?" I like to avoid answering a question by asking a question, and I knew He already knew Who I was disappointed with, so I said it......"Is this what you call favor, Lord?" I immediately regretted it of course. But there it was; the condition of my heart........conviction, confession, and the sweetness of forgiveness wash over me.
"I'm sorry Lord, I just don't understand."
So we get to pediatric ambulatory, apply the numbing creme and wait 45 minutes for it to take effect. Sadness still seemed to loom over CJ and I so desperately wanted to take it away or make him laugh or forget, but I knew he would have to allow God to tend to his heart just as I was allowing Him to tend to mine. Chris and I know we can only lead him to the cross and then stand back and pray he kneels down and receives. It's so hard to watch your child struggle to find peace in their distress and it is tempting to want to offer peace through other means. But that would not be lasting peace so we waited and prayed for him and all the while I knew he was having his own 'discussion' with the Lord. Finally, it came. And slowly his spirits lifted and so did his countenance. It is kind of like when the sun peeks through on a cloudy day and you feel the warmth of its rays. I felt the warmth of God's love for my son in that moment. I thanked God for it.
Friday, October 17, 2008
remission: A decrease in, or disappearance of, signs and symptoms of cancer. In partial remission, some, but not all, signs or symptoms of cancer have disappeared. In complete remission, all signs or symptoms of cancer have disappeared, although there still may be cancer in the body.
I know I should be rejoicing at this news but at the end of this first month I was so hoping to hear,"Wow, the tumors are all gone and you can take him home now, IT'S A MIRACLE." But now I find that what I was hoping and praying for is what was expected all along. So this leads me to ponder two serious questions. One is.....will it still be a miracle if the scans come back clear? And the second, why do we continue to do chemo for 2 years and risk all the toxicity it can cause if the cancer is gone?
I will answer the second question first.
The reality is that even if the scans are clear the tumors could be "hiding out" somewhere in the body and not show on the scans or they can just come back and even stronger. Think of how a cold or infection reacts when you quit the antibiotics before you complete the regimen because you feel all better and have no signs of the cold anymore. It just builds up resistance and comes back stronger than before. That is a pitiful but easy to understand example of why we have two years of chemo even though the tumor cells may appear to be wiped out in the first month. And of course the main reason is all based on years of research on other kids who have walked the halls of oncology units years before CJ.
The hard part is that when I walk these same halls now, the kids in the other beds do not look like CJ. They look like you expect cancer patients to look; skinny, pale, sick, bald, sometimes even lifeless. And my heart aches for them and for CJ because I know we are only in month one and they are way ahead of us in this battle. I can't help but wonder when I see them, "Is that what is to come? Why? Why do we have to destroy his body if the tumors may be gone after the first month?" I really struggled with this all week and then I realized I was struggling with this decision way too soon. I realized I don't even know if the scans will be clear yet so I am getting way ahead of myself. We now know that the scans are set for Monday. So we ask you to pray for clear scans. For remission. Full remission. Miraculous remission. Yes, I said miraculous! And that answers the first question. We want to thank our pastor and his wife for their counsel and reminder that God's miracles come in all forms. From the supernatural to the traditional. If CJ is cancer free we will rejoice and give glory to God, not to chemo! We will give glory to His provision of the doctors and the chemotherapy.
These days I don't have to look too far to see that lived out right before my eyes. I take my example from CJ. We went in for his spinal tap between the space of the last paragraph and this one. He was sedated for the procedure and as he was falling asleep he kept saying I love you mommy, I love you daddy. Then, as his eyes got heavier and heavier and he was becoming more and more unaware of his surroundings he said, I love you mom, I love you dad, I love you God. And he kept saying it. Then he said in barely a whisper and mumble..." I love you God, I know you love me, I know I have cancer but cancer doesn't have me." He doesn't even remember saying it. Chris and I just looked at each other. During the procedure, I prayed that God would be with him and that CJ would be comforted by His presence and reassured of His love. Then before he even came out of the sedation he started mumbling, "I love you mom, I love you dad, I love God." In his sleep! I just stood there dumbfounded thinking what an amazing little boy. I could actually feel God's pleasure as I stood there and watched and listened. I knew God was with Him. I could feel it. And then God confirms it for me in a simple comment by the anaesthesiologist. He says to the doctor, "For what it's worth, I have never had a patient whose blood pressure stayed completely the same during a procedure, never, not once." And I just smiled inside and said, thank you Lord, because that small detail confirmed for me that God answered, and was with him, and CJ was comforted by it.
Monday, October 13, 2008
Saturday, October 11, 2008
-I prayed for a deeper prayer life. I prayed for any barrier or hindrance of my faith to be removed and that I would be able to have a more intimate knowing and dialogue with God.
-I prayed for a closer relationship to my son CJ. Not to my children in general... To CJ! I prayed for a greater understanding of his pain and anxiety and to have a greater love and compassion for him. I prayed for a closeness to him I was afraid was lacking on my part.
-I prayed for confirmation that I would stand faithfully before my Lord when faced with trial. That I would not fall away when the storm comes. I wanted unshakable faith realizing I can not have unshakable faith without first being be shaken.
-I prayed for an estranged friend and I to have peace and reconciliation so that I may live at peace among everyone as much as it depends on me. Romans 12:18
- I said prayers for certain extended family members who I wanted to see grow closer to the Lord. I asked God to use me and my family in leading them closer to Himself.
-I prayed for God to use my son CJ to lead many to intimacy and knowledge of Christ. I prayed that.
-I prayed for God to give my family a deeper compassion for others struggles. To soften our hearts. I even asked him to give us some type of ministry we could all be involved in together.
-And believe it or not, I prayed that I would not have the 'easy life'. Yes, I said those exact words. I said, "God, I don't want to live the easy Christian life where everything is great and it is easy to love and serve and worship you. I want to really do the thing." I wanted to make every moment count and to know my family brought glory to Him.
Why would I ask for that? Why would I ask for troubles. Does God actually send trouble or just allow it? I believe God sends trouble into our lives to strengthen us. David sees this and cries out in Psalm 71:20 "Who, O God is like you? Though you have made me see troubles, many and bitter, you will restore my life again."
Did God give CJ cancer? No, I don't believe so. Did He allow it? Yes. Is He using it to answer all those prayers I mentioned above. Yes and Amen. Romans 8:28 has come alive to me like never before. "And we know in all things, God works for the good of those who love him who have been called according to his purpose. " I do not believe God answered those prayers by giving CJ cancer but I believe God has used Cancer to answer each and every one of those prayers all in this one circumstance. God hears our prayers. And He answers them according to His sovereign will.
Therefore, I boldly ask for God to hear my prayer for healing for my son CJ. God has already used His very own blood to heal him of the most deadly disease there is. The disease of our own sin. Isaiah 53:5 says "..by his wounds we are healed." CJ is healed for all eternity from that. I would not trade that healing for the healing of cancer for one minute but I will boldly ask God to heal my son of this disease within his body as well.
1John 5:14 "This is the confidence we have in approaching God: that if we ask anything according to his will he hears us. And if we know that he hears us-whatever we ask-we know that we have what we asked of him. "
As you know I have implored with you all to persevere with us in prayer. I want to share what God showed me in devotions this week and why I believe this is so heavy on my heart and in no way offensive to God for us to beseech Him again and again and again for healing for CJ. And why I won't stop asking for prayer and pleading with you to continue to pray with us.
It is taken from 1Kings 18:43 when Elijah continually tells his servant to "go back".
Charles Spurgeon says...
"...We must not dream of unbelief, but hold to our faith even to seventy times seven. So far from being crushed by repeated disappointment, faith is animated to plead more fervently with God. It would be more agreeable to flesh and blood to have a speedy answer, but believing souls have learned to be submissive, and to find it good to wait for, as well as wait upon the Lord. Delayed answers often set the heart searching itself, and so lead to contrition and spiritual reformation. The greater danger is lest men should faint, and miss the blessing. Do not fall into that sin, but continue in prayer and watching. Plead the precious blood with unceasing insistent request and it shall be with you according to your desire!"
Amen and Amen!
Plead with us with unceasing request for CJ's healing and sustainment. Your prayers are powerful and effective. Just how effective? CJ's blood counts are good. They are staying strong. His hair has not fallen out. He is not sick. God is listening. Keep praying. CJ will be getting scans at the end of the first month of the chemo. We are praying for a miraculous act of God and clear scans that reveal the tumors completely gone.
Note: I typed this last week and left it in my drafts not sure of whether it was for me or I was meant to to share it. Last night in meeting with my Pastor and his wife, God made it clear that it was to share. He confirmed it with Isaish 53. CJ is already healed where it counts. I pray it blesses you!
CJ praying on Easter morning.
Thursday, October 9, 2008
We are extremely grateful for all the people who have offered to help us financially. We are amazed that people are even offering to help this way when finances are so difficult right now for many people. We even had one family from our church anonymously pay for our first air conditioner leak when we were in the hospital that cost $400.00. Thank you whoever you are. I assure you, we may not know who you are but God knows! And your reward will be greater than any thanks we could offer. My husbands job and co-workers have been extremely generous. Grandmas and grandpas and family have helped us with much of the initial expenses and we are so grateful that God has provided for us through all of you. Please hear our hearts that we know God is using you to bless us and that your sacrifice has not gone unnoticed by us or by our heavenly Father.
Aside from those mentioned above, many others have had the desire to help us in this way as well. We decided the best way was to have bracelets made that would also remind everyone to pray for CJ. You can wear them or put them somewhere as a reminder to pray for him when you see it. We will use any money made off the bracelets directly towards CJ's care. It will be put into a fund for him to be used as needs arise.
Each bracelet says Pray for CJ (and) C-B-C and it has the cancer ribbon. The CBC stands for Child Battling Cancer. And it is a the same initials as Complete Blood Counts. As you know Children Battling Cancer are fighting to keep their Complete Blood Counts at safe levels during chemotherapy. So the CBC is there to remind you to pray for his CBC as well.
Each bracelet is $3.00. There are a couple ways to order. You can order through paypal by clicking the link on the upper left hand of this page that says "Donate". When you order please specify the number of bracelets you are requesting. You can also get them by e-mailing me at email@example.com and I will give you the information to send a check or money order. Or you can also get them through my daughter Alibrandi if you see her at church or other events.
Tuesday, October 7, 2008
Dear Son With Love To Mother:My precious son; my heart aches at all you are going through,
If I could take your pain away I would.
My precious son; as I watch you struggle to be brave,
My dear mom; as I watch you struggle to be brave,
My precious son, I will be by your side every moment,
My dear mom, I will be by your side every moment,
My precious son, may God grant you the peace that passes all understanding;
My dear mom, may God grant you the peace that passes all understanding;
I love you CJ.
Sunday, October 5, 2008
Unfortunately, he was not feeling well enough to go to church today although we had hoped to take that step together as a family. There is a strong desire in each of us to be with our church, especially now. Not being with them is like being told you can not see your family. Chris prayed right up until 15 minutes before the service started and just did not have peace about CJ going because we meet in a public middle school and as you know, we have to be extremely careful about CJ's exposure to viruses and germs. Alibrandi, our 12 year old daughter has been attending throughout this ordeal and I felt I needed to be there with her and also had a strong desire for corporate worship. I thought I was prepared, but when I walked in without Chris and CJ and heard the worship team leading worship and my saw my friends singing praises to my God I fell apart. It was extremely difficult to be there without them. My spirit rejoiced while my heart was crushed. It was truly bitter sweet! I was struggling with being there and having left CJ at home until God used my friend Wendy to speak directly to my heart. Here is the note she passed me...
On that note of awareness, we are also seeking to bring awareness to what cancer is doing to families like ours and help raise money to help those families and fund research.......
Our family would like to invite you to walk with us in honor of CJ at 'Light the Night'. It will be held on October 11th from 6p to 9p at Memorial Miramar Hospital at Miramar Parkway and 172 Avenue. (Just a few block west of I75 and Miramar Parkway)
See information below that I copied from the web site. I also added the web site address for you to get further information.
You can click on register, join team, and then under team name put CJ's Friends. The team captain is Penny Arbulu. Once you join you can email to your friends and family to gain support if you like. They would like each registrant to raise a minimum of $25.oo and that will get you a balloon to carry at the walk as well as a meal ticket. You can come without raising the funds and walk but you won't have a balloon to carry. You can also register at the walk although it may take a little longer if there are lines.
The Leukemia & Lymphoma Society's Light The Night Walk is an annual event to raise funds for cures. It’s the nation’s night to pay tribute and bring hope to thousands of patients and their families. The Leukemia & Lymphoma Society's Light The Night Walk is a two-mile twilight walk that features participants carrying illuminated balloons to celebrate and commemorate lives touched by cancer. Cancer supporters carry red balloons, while cancer survivors and patients carry white balloons. For the second year in a row, supporters can carry a gold balloon which represents someone who has lost their life to cancer. Together, they "light the night" and truly brighten the future for millions touched by cancer.
Anyone can take part—children, adults and seniors are all welcome. This is a casual Walk with no fitness requirements. Not only will you be helping find cures.,
CJ reading the blog comments....
Thursday, October 2, 2008
I have been reading the comments and I want to thank you because they really cheer me up and help me feel like I am not alone even though I can not see all my friends right now. So far, the medicine has been making me feel very tired and hungry. But I try not to focus on how I feel and I think about ways to cheer up other people like writing letters and emails. I see all the other kids who are sick here and I think about what they are going through. I try to talk to them since I am going through it too. Kids who have gone through this encourage me so I want to encourage kids going through this too.
My dad is my hero! He is a great leader. I love him. He has always been there for me. I love him. The love he shows me is so big . I love you daddy.
Wednesday, October 1, 2008
Before I begin, let me say I know this began before I am even aware of and I do not presume to know when God stirred these events into motion or if He just nodded His approval as they were stirred into motion by some other means. What I do know is that not one thing that has happened to CJ was not filtered through God's sovereign will. Since I can't tell you from God's perspective nor would I even try, I can only tell you how it happened from our earthly perspective.
First, I want to just touch briefly on CJ's childhood to you. I know this may sound like hindsight to you with all that is happening but it is true that all who knew CJ well from the time he was very young would say to us that God had a calling on his life and he would do something amazing for God. We used to call him our little minister. He would say strange and insightful things as a young child. He would speak deep spiritual truths without even knowing he was doing it. He would ask spiritual questions we usually couldn't even answer. His compassion for others far outweighed anything I had ever seen in a child. Let me say that I know many kids are special and display their own unique qualities, and we in no way are declaring him more special than any of our other children or anyone's children but I share this to say that we believe these are all ways God prepared our hearts and his for this time. Furthermore, although this is an unbelievable shock to us, there is still a stange sense of quiet knowing.
As a young boy CJ went through a time when he began to struggle with fear and anxiety which caused a few panic attacks. By about age 6 this was gone and he grew into your typical young boy who loves sports, guns, games, friends, family and God. We are a faith filled and family oriented family. We are an active homeschooling family and in the middle of the 2007-2008 school year (his third grade year (age8) the anxiety suddenly began again. He began struggling with panic and anxiety over things he had previously had no difficulty with. Simultaneously, he began to struggle with stomach issues. His stomach always seemed to hurt. He spent more and more time in the bathroom. In researching this on the Internet a little I would look up anxiety and it would say "rule out stomach problems first which can cause anxiety", then I would look up stomach problems and it would say "rule out anxiety first which can cause stomach problems".
Therefore, we faced the dilemma of separating the two and treating them as separate issues that could be closely related. We took him to his Primary Care Physician who has been by our side throughout this whole thing. He referred CJ to a GI who ruled out any major stomach problems and said maybe it was Irritable Bowel. He had blood work done both by the Primary Care physician and by the GI. There were no signs of a problem.
Then, in about early May, he began having some back problems. He would complain of back pain but it seemed to get jumbled into all the other things he was complaining about at the time. It just seemed like one more thing that hurt and we thought it was related to the stomach issues. He would get constipated and then finally be able to go and say his back felt better so we thought his back pain was from constipation. On a trip to Gainesville at the end of May he had his first bought with severe back pain. We had celebrated my nephews birthday and had spent the day on a slip and slide. Later that night he woke up with severe back pain. Assuming at first that he was constipated I sent him to the bathroom. The next morning he was still hurting so we assumed he must have hurt it as he threw himself down the slip and slide. It hurt just watching him. We went home and he began to feel better.
In June he started playing flag football and riding go carts. The back pain came back again. This time he woke in the middle of the night crying about the severe pain. This incident lead to 2 ER visits in a matter of 3 days. X rays were taken, blood work, urine and nothing seemed wrong. They had no explanation for his back pain and we assumed it had to be the go cart riding we had done the previous day as the onset of pain. We were told to follow up with our primary and we did. He wanted to follow up and referred us for an MRI. We had an appointment set for back on July 7th. We got a call two days before the appointment that our insurance company had denied his approval for the MRI. Our Primary Care's office spent hours on the phone trying to get it approved for us but to no avail.
Soon he began to feel better and was even playing flag football on Saturday mornings. His stomach problems were increasing all the while and he was spending more and more time in the bathroom. This is when I started saying things to my husband like, "There is something wrong with this kid." We knew something wasn't right but we couldn't quite put our finger on it. It just seemed like he was never feeling well. Something always hurt....his stomach, his back, his hips, his legs. We could not pin point an area that was the problem. We couldn't decide if each symptom was related to another or separate. He began missing birthday parties, church and time with friends. I guess I knew something was wrong but never quite imagined anything like this. I thought maybe an undetected hip injury or abnormal development, or maybe severe growing pains. But since we had not been approved for the MRI we had no way to figure it out.
One weekend in August, CJ once again came into our room in the middle of the night and was once again having severe back pain. This lead us back to the ER. We did the same routine of x-rays, blood, and urine. They did not perform any new tests. They diagnosed him with Sciatica and said to follow up with the primary. This struck me as an odd diagnosis for a 9 year old boy and no new tests were performed even though we had been there 3 times in the last couple of months for the same problem. When I followed up with the primary, he really did not like the diagnosis of Sciatica and was upset the MRI was denied so he referred us to an orthopedic specialist. He knew we would either get some answers or we would get the referral for the MRI through him. So we went and took x-rays that once again showed nothing. Thankfully, the orthopedic was very thorough and felt CJ was presenting atypical so he referred him for the MRI. This referral was almost denied as well. The day before we were supposed to go we were told they were having trouble getting approval for it from our insurance company. Thankfully, the orthopedic office followed through and spent almost 6 hours making calls and fighting for the MRI. We are very grateful.
That MRI was scheduled for the very next day, September 12th. And as most of you know that have followed the blogs from the beginning, that routine outpatient MRI lead us here with a diagnosis of cancer.
As a parent, my heart aches over the time that elapsed while CJ was struggling and suffering. I am ashamed to say many times I was frustrated with it and would not be as compassionate as I should have been. I know this story makes it sound like we were diligent parents and did all we could but there were so many times he was struggling and we could have done more and been less selfish and more understanding. We have both asked CJ to forgive us and he has. We have both asked God to forgive us and He has. Now we must accept that and do all we can now to help CJ go through this. The first few days the temptation to drown myself in condemnation was great. I kept thinking I should have done more, been more, felt more, said more, tried more...so on and so on. But I kept washing my mind with Romans 8:1 "Therefore, there is now no condemnation for those who are in Christ Jesus, because through Jesus Christ the law of the Spirit of life set me free from the law of sin and death." I also realized that "Godly sorrow brings repentance that leads to salvation and leaves no regret, but worldly sorrow brings death." (2Cor 7:10) So I trust in God's sacrifice to cover my sins against my son during that time. As tempted as I am to punish myself and allow shame to consume me and, I would be saying my ways are higher than Gods and my standards are higher than His.
That all said, I know many of you are angry about the MRI being denied. We too are very angry when we realize we could have been attacking this cancer over two months sooner and CJ would have had 67 days less of suffering. My heart aches just thinking about it. All I can say to that regard is that I must believe God's timing was perfect. He knew exactly when we needed to know. One reason we are so sure of this is that there are a series of events that I could list that took place in that last month that had to happen before God allowed us to know. Even up to the the very night before the MRI appointment God was preparing us and those around us. I can even look back and see His guiding hand in this clearly as far as two years back. And I am not talking about coincidences. I am talking about things we could not explain at the time or understand that are all crystal clear now. For example, why God prevented us from moving away from South Florida when we really desired to and took all the necessary steps to. Another being God leading us to a church home that is like being in the very arms of God Himself in their shepherding and care for our family. Even starting this blog was all part of God's plan. And the week before this diagnosis my family attended a conference with our church which was a time God used to prepare the soil of our hearts for this journey. I have to focus on that when I am tempted to become very angry at AvMed. I will write them a letter when the time is right. I will tell everyone I know what happened so they too will protect themselves from needless denials. But until God shows us otherwise we are clinging to Romans 12:19 " Do not take revenge, my friends, but leave room for God's wrath, for it is written: "It is mine to avenge, I will repay" says the Lord. God has already began that process in the form of my aunt who heard our story. She is the administrator for a large firm and their insurance was up for renewal. Although AvMed came in well under the other bids, she told the representative to her face that they would not go with them because of what they did in denying CJ's MRI. They have already lost a $113,000. contract due to their denial of CJ's MRI. God sees!
Well, that is how we ended up with a diagnosis of Acute Lymphoblastic Lymphoma. Ours heart ache at the diagnosis, yet we rejoice that it is a treatable cancer. We are trusting God and seeking complete healing for CJ. We are humbled at how God has moved His people to support CJ through this; many of whom don't even know CJ personally. He has been so uncomfortable and in pain for so long that we long to see him healthy and free from the worries of stomach and back pain. We long to see him running and playing the sports that he loves and bowing to serve the God that he worships! But most of all, we long to see God high and lifted up. Exalted as King of Kings and Lord of Lords. We long to see every knee bow at the name of Jesus Christ!
Thank you for letting us share CJ's story with you.