Friday, February 27, 2009

Cheer Up



As usual, the anxiety began around bedtime last night. Knowing he had an appointment today, CJ started to get nervous and express his reluctance to go. We did the usual tap dance of encouragement and pep talks to remind him of how far he has come and how close he is to maintenance. But this time I added, "Why don't you come sleep with mommy," thinking that would help. Now don't get me wrong, CJ sleeps with us many nights but usually it is after an appointment when we want to keep a closer eye on him or as a weekend treat. This was the night before an appointment and boy was it an eye opener to me as to the level of his emotional turmoil in regards to these appointments. He slept so fitfully and had a constant audible whimper that sounded like a wounded animal. We continued to reassure him until at some point, like 4 am, he finally slept quietly.

Regardless of the restless night, CJ and I headed out to his appointment in good spirits in the morning. He had high hopes that I was certain were going to be crushed. You see, this afternoon was the annual strawberry picking field trip with our church and he really wanted to go. On top of that, his sister is celebrating her 13th birthday by attending the rodeo this weekend with some friends. He was crushed when we told him he could not go. To alleviate his frustration, and admittedly, to buy some time, we told him we would ask the doctor if he could go to either of these events. Chris and I were sure his blood counts would be down and the answer would be a resounding no. But at least we could let the doctor be the "bad guy" and let him break his heart instead of us! Just kidding. (Well, sort of.)

We got blood counts and met with the doctor and to our surprise, he said yes! Since both events were outdoors, the doctor felt it would be okay. CJ could not only go to the farm to pick strawberries with his friends but attend the rodeo with his sister for her birthday as well. This was great news! We rejoiced that his blood counts held well enough to allow for this, and then received a firm warning from the doctor that they would soon drop due to his level of chemo intake. Warning noted, I looked forward to the afternoon far far away from the hospital and out in the open picking fresh strawberries with the family.

With something to look forward to, we settled in and seemed to be doing great until it was time to access his port. He immediately began to get tense and his anxiety soared. I reassured him repeatedly and reminded him how smooth it always goes. And sure enough, it went smoothly. Typically, once it is accessed he bounces back to his usual self. But today he decided to feel sorry for himself for a while. I tried to cheer him up and encourage him but he told me I just do not understand what it feels like. I gave him a bunch of pathetic excuses of what I do understand and tried to shake him out of it. He continued to feel sorry for himself! I tried to cheer him up with the wonderful art of distraction. He continued to feel sorry for himself! I tried to cheer him up with the wonderful art of humor. He continued to feel sorry for himself! I tried to cheer him up by reminding him of what great news he just received. He continued to feel sorry for himself! I admittedly tried bullying him into cheering up, but he continued to feel sorry for himself. So I gave up! I basically told him if he wanted to feel sorry for himself that was fine, but I was going to celebrate the good news and enjoy my book. So I stopped talking and went back to reading.

Apparently, shutting up was all God was waiting for me to do so that He could minister to CJ's heart. I read in quiet for about 10 or 15 minutes and suddenly CJ said to me, "Mommy, can you shut the door and pray with me to thank God for the good news?" Humbled, I shut the door and listened to my sweet son thank God for the good report he received. While he prayed, I silently confessed my inability to know when to just shut up and let God do His thing.

With the doctor on our side now, we convinced him to speed it up so we could get out and actually make it to the field trip he was allowing us to go to. We left excited and picked up the rest of the family to head to the farm. I enjoyed watching CJ and his siblings pick the strawberries and visit with his friends. I admit that as I saw him surrounded by people I began to cringe at the thought of what we were exposing him to and wonder if we made in mistake in even asking the doctor. I am already worried about all the possibilities of exposure at the Rodeo and wondering how I will keep him protected in such a large crowd. But to witness him receive a good report and be able to turn that into thanks and prayer to God, makes it all worth it.

You are my God, and I will give you thanks; you are my God, and I will exalt you. Give thanks to the LORD, for he is good; his love endures forever. Psalm 118:28-29
Prayer Requests:
Once again, we can not thank all of you enough who have persisted in prayer with us. We are so grateful and truly believe it is making all the difference in his blood counts and immunities. We ask for continued prayer for his body to tolerate the level of chemo he is receiving. We pray for the chemo to 'do its job and only its job'. He is also having some joint pain in his legs and we are praying for this to discontinue and correct itself now that he is off the steroid. The steroid has caused swelling and his hair is beginning to fall out again. Although expected, all these changes are hard for him to watch. Please pray he will remain strong both physically and spiritually. Thank you for your continued prayers.


Friday, February 20, 2009

The Faithful and the Faithless


"Submit yourselves, then, to God. Resist the devil and he will flee from you. Come near to God and he will come near
to you.... Grieve, mourn, and wail. Change your laughter to mourning and your joy to gloom. Humble yourselves before the Lord, and he will lift you up."
James 4: 7-10


CJ and I managed to somehow live out both sides of the above scripture this week. Fortunately, he experienced the top half while I unfortunately experienced the second. He was strong and courageous in the face of fear. He said it came for him while he was in the shower on Tuesday. He was thinking of his appointment the next day and worrying about the shot when he suddenly found himself resisting Satan with words and drawing near to God for strength. He told me that he began pointing to the bruise he had on his leg from the shot and pointing to his port and saying firmly (out loud) "Is this all you got? Is that it? Well you are going to have to do a lot better than that to knock me off my feet!" He shared this exchange with with us that night and by the next day we already saw the fruit of his determination to resist the devil. His strength and faith grew throughout the week. Mine, on the other hand, crumbled.

Tonight, we are home after receiving his 6th and final shot of the Erwinia with no reactions! Praise God! We were so lighthearted after he received it that we were having some fun cutting up with the nurses. But leave it to the doctor to come in with his stethoscope and use it to burst your bubble. He did the usual checkup on CJ, and even though things look really good, he got serious and reminded me not to let our guard down. He said this is the time to be alert and on guard for fever and infection. He added, "Watch him closely. These are some strong drugs he just got." (emphasis his!) I took the advice and agreed it is no time to let our guard down. But I do have to admit that as he said those words, I thought to myself, "Well then, it is a good thing that I serve an even stronger God!" I was actually proud of my own internal response. But I admittedly confess my faith is fickle and weak and pathetic! God called my bluff in no less than 10 minutes! It is amazing how easy it is to brag about God's strength when things are looking up, but introduce a dose of unexplainable suffering and the walls come crumbling down. My laughter and joy were quickly turned to mourning and gloom.
The doctor said goodbye and we settled in for the wait of the chemo drip and the mandatory hour after the shot. CJ was watching a movie and I began scribbling some thoughts in my journal. Brett was playing with some other cancer siblings and a little 3 year old cancer patient named Carla when the nurse came to give her some meds. She started to cry and protest. Brett made his way into our little curtained area to watch the movie with CJ. I kept journaling my thoughts when her screams grew louder and louder and harder and harder. I was trying to tune it out and focus on my journaling and I kept having to read the last line I wrote back to myself over and over in an effort to gain a clear thought. The last line I wrote before this little girls crying episode began was, "Forgive me for doubting You, please help me to not struggle so much with this." Do you know how if you ask God for patience He doesn't give you patience but an opportunity to practice patience? Well, immediately after writing that, the little girl went from upset to HYSTERICAL. She was SCREAMING at the top of her 3 year old little lungs, YA! YA! YA! (which i know to be Spanish for stop-stop-stop). That was followed up by screams of NO MOMMY, NO MOMMY, NO, NO. I tried to desperately to tune it out but it was so completely overwhelming. I stopped staring at my journal and started praying. And I mean PRAYING HARD. I was BEGGING God to calm her, to help her, to do something to relieve her fear, her sheer terror at what was happening. I just kept crying out to Him HOW LONG O LORD HOW LONG? I was begging Him to do SOMETHING, ANYTHING. I was trying to match her screams to her mommy with my screams to my Father. As she was screaming YA YA, I was screaming STOP IT STOP IT! And then it happened. I just completely broke down. I LOST IT. I was balling like a baby and screaming at God to Help me understand how HE could just sit there and listen to her scream. I was a TOTAL wreck just like the little girl. The tears just poured and I was heaving sobs to match her sobs. I can STILL hear her screams as I type this. She was yelling for her mom and I could just picture her hysterical little face in my mind searching her mom's face as she held her down for some clue as to why she was letting this happen and begging for her to do something. And here I was behind the curtain yelling for my Father and searching His face for some clue as to why He was letting this happen and begging for Him to do something. Then I began to think very irrationally. At first, I actually considered very seriously opening the curtain and scooping her up and taking her away. Just running out of there with her! I wasn't thinking about what would happen to CJ or Brett. Then in a more rational thought I thought, well maybe I won't take her but I will just scream at them to STOP IT! It was AWFUL. Just awful. I can't even share here all the thoughts that ran through my head but I will share one that surprised me. After all my thoughts of doubt and all the horrible accusations and questions I flung at Him..the last thought that came to me was of another mother listening to the screams of her child as He suffered horribly. I imagined the agony she must have been in; the questions she must have asked; the confusion she must have felt. The thought stunned me into calming down a bit even though I thought it was a strange answer to all my accusations, questions, and pleadings. You see it wasn't the answer I was looking or hoping for. I had asked Him during my crying fit to "SHOW ME WHERE YOU ARE IN THIS GOD. HELP ME UNDERSTAND!" And His answer was to show me His Son suffering while his mother looked on in agony. There's nothing like a good dose of the Gospel to snap you back into reality.
Somewhat calmed now, I tried my best to compose myself because I desperately needed a tissue since I had none in my little cubicle. A nurse caught my face as I walked by and came over to me. She comforted me and I told her I had no idea how she does this day in and day out for a living. The parents saw me crying and I desperately wanted to run and hug the mom who was consoling her little girl who was finally down to just a hysterical whimper at this point. I was so FRUSTRATED because of the language barrier between us. I could not even communicate with her to verbally comfort her or encourage her. So as my eyes met hers I tried to offer her every ounce of love I could muster through a look. I felt so bad for her and she knew my heart was broken for her and her little girl. Her eyes in turn comforted and, surprisingly, thanked me.

Back in my cubicle, I looked at CJ and, for the first time, thanked God it was him that got Cancer and not Brett or Corey. I must confess that when he was diagnosed, I told God He made an awful mistake. Not CJ, I said! And I did not mean, NOT MY CHILD, but...NOT CJ! I actually thought it would be better if it was Brett or Corey because they are little and would not understand. I even remember telling Chris that of all our kids CJ was the worst it could happen to. His answer to me was, "Somehow I knew that if something were to ever happened to one of our kids, it would be CJ." And deep down, I did too, but I also knew CJ was my highly sensitive and fearful child and could not handle this. I was SO wrong. I realized overtime and had it confirmed today that to watch Brett or Corey have to go through this and not be able to explain why I was allowing so many awful things to happen to them would be devastating. Don't get me wrong....we had days in the beginning that CJ was just like that and begged us to make it stop. I I remember that agony because I couldn't do anything.....but at least I could try to explain it to him and help him understand. And over time, he did. And God has used this for the good of his sensitivity and fearfulness. To have to hold one of my little ones down day in and day out while they begged for relief from the two people they trusted most in the world, would have crushed me. Would God have provided the grace? Yes, I believe so. But today, I am so grateful it wasn't required. Tonight, I go to bed with my heart full of love and compassion for all the moms of "little ones" like Clara, and baby Amanda and little Leah and so many others. My prayers are with you and I pray God's grace all over you! I pray Carla's screams leave me before I drift off to sleep! Then again.....no I don't! I pray they are a part of me forever!


"Here is a trustworthy saying:

If we have died with him,
we will also live with him;
If we endure,
we will also reign with him;
If we deny him,
he also will deny us;
If we are faithless,
he remains faithful—
For he cannot deny himself."

2 Timothy 2: 11-13

Prayer Requests:
That the medicines CJ received will continue to do their job and only their job. That he would remain free from infection or toxicity to his other organs as his body fights. That his faith and strength would continue to grow and that God would continue to minister to his little heart. Please pray that God will continue to use Chris and, I as inadequate as we are, to guide all of our children through this with a Gospel minded focus. And lastly, that God would forgive me my accusatory trespasses against Him and deal with my unbelieving heart!

Saturday, February 14, 2009

Brave Love


Week one of phase four is finally behind us. Sometimes just getting started is the difficult part. CJ did extremely well and had no serious reaction to the new medicine substitution Erwinia. He was watched closely both by the doctors, nurses, and us at home because this is still an experimental drug. He had a slight swelling of the lips on Monday, but Wednesday and Friday we saw no signs of reaction. He will be watched closely next week as he continues receiving these shots again on Monday, Wednesday, and Friday of next week. He also began a steroid regimen again and that has increased his appetite incredibly. Because it is such a strong steroid and has a high risk for joint problems, he was changed from a taper dosage to a start-stop, start- stop dosage pattern. This is a relief and something Chris and I were hoping they would change. We expect to see much less side effects this way and are grateful for the change in protocol.

CJ's spirit continued to improve as the week progressed. Chris took him on Monday and we noticed he struggled with going and Chris said he seemed down the entire time. I came later and noticed he was not personable or friendly and just did not seem himself. He mostly took it easy that afternoon and rested. By Wednesday, we switched, and I took him to his appointment. We had a good morning and some quiet time alone in our little chemo cubicle before the patients began to pour in. One such patient was in the cubicle next to us separated by only a thin curtain. We could hear them arrive because the patient had a tracheatomy. That means she had a breathing tube inserted in her throat at the trachea to help her breathe. At times, those that are trachead can have a very loud gurgling, slurping kind of sound. I have heard this many times over the last four months and never had a problem. But at this particular time, it was extremely loud and I have to confess it was very difficult for me to listen to. I began to struggle immediately and could not believe I was being this insensitive to another patient. I actually started to get really nauseous and wondered if it was bothering CJ because every now and then I noticed him look over at me or just seem to be listening. Lotsy happened to be there talking to us at the time so I could not leave or move. This went on for 15 or 20 minutes or so and it increasing got worse. I kept praying silently, yet earnestly, over and over confessing that I was ashamed to feel this way and I asked God to help me be more sympathetic. I kept asking God what was wrong with me? Here I am with my child who is sick and I would never want someone to feel this way when they see his bald head or his port, and then another child comes in and I am worried I am going to get sick from the noises. I just keep praying and praying and asking for forgiveness and asking God to give me a stronger stomach. I kept wondering how I was going to make it through the entire day like this and then I suddenly realized.....all I have to do is take one look at the child and it will go away. I don't know where the thought came from...the Lord, the Holy Spirit, myself...but the message was as clear as it gets. "Get up and go look into the face of the child and you will be fine." So that is exactly what I did! I got up and walked around the curtain and I looked and saw the most beautiful, big eyed, little baby girl! She was precious! It was quite a surprise to see a baby. I thought it was a big child for some reason. She was only about 17 months old (same age as my Corey) and I immediately wanted to scoop her up and give her a hug. She looked up and smiled and waved. Her mom was there so I engaged in conversation with her and she turned out to be really open and friendly. I learned that Amanda also had cancer except it was an extremely rare brain cancer. She was diagnosed at age 4 months, had surgery , radiation, was trachead and had a feeding tube inserted. She finished chemo a few months ago only to relapse with a new tumor. Surgery again, chemo for 2 more years and her survival rate just went from 5% to unknown because her cancer is so rare. (That is the short, easy version of a real life story that would blow your mind). I spent the next hour talking to her mom and feeling free to ask many questions both medical and spiritual. I discovered she is also the wife of a law enforcement officer and a Christian. These commonalities lead me to ask her questions about her faith and beliefs in the midst of this trial. She was open, honest and encouraging to me. To be perfectly honest, I had been struggling the past couple weeks with my emotions, thoughts, and tension. I had been seeking God with how to handle it and then here is this little girl and her mother and I immediately realized how blessed I am. Needles to say, I never once felt nauseous after I laid eyes on this precious little girl. Quite the opposite. I was thankful that the sounds were a distraction and that they distracted me enough to get up and do something about it. I would never have talked to the mom this deeply if I was not determined to go over and look her child in the face and say hello. So sometimes, even our inappropriate reactions can be a tool God will use to minister to us and others. He allowed me to see a side of myself I did not like that morning. I was surprised and ashamed by my own reaction and yet through confession and asking Him for help, He provided not only the relief I was looking for, but so much more in the form of blessing and answered prayer to my struggles.

By Friday, CJ was back to his normal upbeat and kindhearted self and we shared some wonderful conversations. We spent time journaling together and making Valentines cards for family. His Aunt Penny came to the hospital while he got his chemo and that was uplifting for him. She got to see how his anxiety builds right before he gets his shots and how incredibly brave he is. Brave! I have been thinking a lot about bravery lately. Maybe that it because I have the privilege to watch a 9 year old boy display it on a weekly basis. Maybe it is because I am surrounded by it at the hospital and maybe it is because I have been studying Esther, a woman of bravery. Bravery would be a quality she displayed when she entered the Kings palace without knowing the possible outcome. Certainly, there was the very real possibility she would lose her life. But more importantly, the lives of those she loved would be lost of she wasn't brave. My situation is, by far, different than that of Queen Esther. But lately, I sense God calling me to be brave none the less. In the beginning of this trial, it used to be a clear call to "trust Him", but I think since we made some progress there, He is now urging me to "be brave". It is the next logical step after all. Once you surrender to trusting Him, He then says, "Take courage and be brave, we have places to go." I know this may not be the typical thing you hear a woman talking about growing in. We tend to relate bravery to a man's world. I am married to one such brave man! But this study of Esther has opened my eyes to bravery in a whole new way. And to discover that a woman of "bravery" is worth far more than rubies! Somehow, I relate to the Proverbs 31 woman in a whole new way! Thank you Beth Moore for uncovering that golden nugget that was buried right before my eyes. It is like having buried treasure right in front of me with only one layer of sand covering it for years and you reached in front of me and made that final swipe of earth that uncovered the riches held below.... how my heart explodes with joy. Yes, God called me, a woman, to be brave!
Like Queen Esther, I also do not know the outcome, but I do know God wants me to be brave in the face of the unknown. I am learning that bravery does not mean I have a strong stomach, thick skin, and no fear. It means I am girded with every ounce of strength the Lord provides and I am valiant because I have One who has gone before, is my rear guard, and who carries me when I can't carry myself. Through this experience, I have become keenly aware that bravery is at a whole new level when it is required to be demonstrated for those we love. It is one thing to be brave in the face of danger to oneself; it is quite another to be brave in the face of danger in order to protect those we love. And that my friends, is love. "Greater love has no one than this, that he lay down his life for his friends." (John 15:13) Do you see the connection? To be brave is to love enough to lay down ones life for his friends! That is what Esther risked. More importantly, that is what Jesus did!

One of the many things I love about God is how kind He is in encouraging my progress when we are learning a lesson together! As stern as He is with me when necessary, is as sweet as He is with me when necessary! He did just that this week. We took CJ to a Valentine dinner at a restaurant called Brio with some family from Venezuela. His Aunt gave him a gift with two movies in it. Both were themed on bravery. She even wrote in his card that she chose these movies for him because "these movies are an example of courage and love."
Over coffee we were commenting on how great the restaurant was and she suddenly says to me, "Do you know what Brio means in my country?"
I have no idea, so I ask , "What?"
She looks me in the eye and says, "It means brave, valiant."
And I just look at her and smile (and have that inside private moment with God) and think, 'of course it does!'

"Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go."
Joshua 1:9



An excerpt from the journal of a brave 9 year old boy:

"....I know I am almost done (with chemo) but sometimes I feel like I am done and that I just can't go anymore. But I know that with God all things are possible. Through this next two weeks God will be helping me the most. I may only see one pair of footsteps sometimes but I know that means God is carrying me......even the doctor said to me that this is going to be one of the hardest times right now, but I know that God will help me through the tough times..."

Happy Valentines Day!
Love Brave!


Friday, February 6, 2009

The Voice of Truth



The results of CJ's EKG of the heart came back and everything looks good. We give praise, thanks and glory to God for protecting CJ's heart throughout the last four months of chemotherapy. He was able to begin phase 4 today and receive his chemotherapy. He has the weekend to rest and allow the chemo to do its job and then he goes back on Monday, Wednesday and Friday of next week for more chemo. CJ also began a steroid regimen again with this phase. Although this is a different steroid than he had in the beginning, we can anticipate all the side effects we experienced before with the steroids. He is also receiving the same meds that cause hair loss and low blood counts. So we are back to the beginning folks and we need to storm the throne with prayers on his behalf. Remember, when he began these meds four months ago, he began with high counts and a strong body. This time we begin four months into chemo, his counts are low, and his body is weak. Pray for strength. Pray for sustainment. It's time to remember what the C-B-C on the bracelets stand for. It is a two-fold message. It stands for Child Battling Cancer. And he is battling folks. He is fully engaged, wearing the full armor of God. And it also stands for the acronym of Complete Blood Counts. When CJ gets his blood drawn they say they are checking his "CBC". So let's put the bracelets on and pray, pray, pray. If you need a bracelet or yours broke, I will be more than glad to replace it. Contact me via email or the blog comments and I will send you one.

I want to thank all of you for your prayers. Thank you for praying for his spirit to be strengthened. He seemed to have a breakthrough today. The last few visits he has been struggling more and more with going to his appointments. Although this is not out of the ordinary for a child of CJ's age battling cancer, this is out of the ordinary compared to how he handled the last four months. I shared with you in the previous post that I sensed a weariness in him. We have prayed with him, read him Scripture and given him battle imagery to encourage him. He was upset last night anticipating the appointment today and I expected the same struggle to reoccur. But he did amazing at his appointment. He never complained and was only a little nervous when they accessed his port. We had a good time together and I whipped his but at cards. On the way home I told him I was really proud of him and noticed a big difference in him today. I asked him what it was that caused the change. He said his dad prayed with him last night before they went to bed and then he said that he started thinking about a scene in the movie Facing the Giants. He said it was the scene where the boy is doing the death crawl, blindfolded and his coach is there the whole time encouraging him not to give up, not to quit, to give it his all. The boy was really struggling, but when he focused on his coaches voice above the pain and weariness he was able to press on. CJ said he realized he needed to be like that. And the more he thought about that scene in the movie, the more he was encouraged.

I never fully grasped the depths of that scene until I listened to CJ today tell me how it encouraged him and gave him strength. I never realized the similarities in CJ's trial and the blindfolded boy who could not see the end zone. CJ is like that boy. He is facing his giants. He is on a death crawl. He feels like he is blindfolded and there is no end in sight. He feels the weariness and the fatigue. His strength is waning. But when he focuses on his Coaches voice, the voice of Truth, he finds strength he did not know he had and he is able to press on further than he would ever think possible. My prayer is that like the boy in the movie, when the blindfold is finally removed, CJ will look around and be completely amazed at how far he has come.
CJ,
Keep listening to the Voice of Truth.
Block out all other voices that compete for your attention. Tune your heart to the Fathers Voice and he will take you from strength to strength.
We love you, Mommy and Daddy

Here are some pictures of the EKG CJ had done on his heart. Before CJ went to have his first EKG we were explaining to him that it is when they take pictures of your heart. He said it would be neat if we could see God living in there. Then a half hour into the procedure his technician suddenly said, "Look at this, this is the four chambers of your heart." And when we looked up at the screen, there was a cross. It was really cool. But we did not have a camera that first time. So when I heard we were getting another EKG I brought my camera this time. I wondered if it would still be there. Maybe we imagined it. And sure enough... there it was! It is so cool to see in person, so I hope the picture come out good.
I desire to do your will, O my God; your law is within my heart.
Psalm 40:8

This is CJ's heart! Notice the cross dead center!



The tech taking the pictures.




A close up of CJ's heart!


Monday, February 2, 2009

Here we go again....

*****See update to this post below*****


"Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40: 28-31

Tuesday begins phase 4 of CJ's chemotherapy regimen. Phase 4 is termed 're-induction and re-consolidation' in that it is very similar to phase 1 which began on September 19th. CJ will receive some of the same medications he did in phase 1 as well as some new ones. It will last about 49 days and during that time CJ will probably experience a bit of deja-vu as he will be back on steroids, receiving leg shots again, and probably will even get a little home health chemo again late in the phase.
We do have some concerns and specific prayer requests for this phase that we would like to share with you. One of the medications CJ will be receiving is known to affect heart function as well as liver functions. We would ask for increased prayer for his internal organs to be free from any effect from the chemo. Ask God to completely surround his heart, liver and kidneys with a barrier that the medications can not penetrate. Another medication is a steroid that is known to cause necrosis of the bones and joints which can be painful and debilitating. We would ask for specific prayer for protection over CJ's bones as he receives this medicine. We would also like to ask for prayer for CJ's perseverance as he becomes more and more weary with the appointments and treatments. I think the break over the last 16 days was good for him and he enjoyed the new level of freedom we gave him to see friends, family, and attend events, but it also makes it difficult to tighten the reigns again. Although he has embraced everything really well considering all he has been through, for some reason 7 weeks sounds like forever to him right now. And although I want to ease his apprehensions by making promises of what is to come at the end of the 7 weeks.......maintenance, with appointments only once or twice a month.....I know that I can't. I learned my lesson on the day of his first MRI that I can not make him any promises. That was truly a day of 'broken promises' that I will never forget and I don 't ever want to repeat. The only promises I can make him are those that come from Scriptures. Because the Author of those promises can not lie. "God is not a man, that he should lie, nor a son of man, that he should change his mind. Does he speak and then not act? Does he promise and not fulfill?" Numbers 23:19 So I comfort his weariness not with my words but with the words of Him who said, "Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light." Matthew 11:28-30

Although we enter this phase 'consolidated' as a family and stronger for all we have been through from September until now, at times, it seems like we are reading the same book but are all on different pages. CJ seems to be on the chapter that drags on and on and never seems to end. Yet he knows he has to stick with it to get to the next chapter and finish the book to fully understand the story. Chris seems like he is stuck in the concordance, looking up this term and that term and cross referencing topics. I think sometimes he misses the wonder of the story because he is so focused on the details. It is like trying to enjoy a book and edit it at the same time! He points out all the little details I miss as I read my chapter more introspectively and try to stay focused and not miss anything as the story unfolds. There are times I get so concerned with what page everyone else is on that I sometimes forget what page I am on. But mostly I get too focused on trying to see the heart of the Author behind the words on the page that I sometimes miss some of the important details. Allie, well she is the book worm who just stays dedicated to whatever chapter she is on at the time. She reads each chapter faithfully sort of like she reads her Bible. She resists the urge to skip a day, and resists the urge to read ahead. She seems to somehow be on whatever page we are all on even though we are all on different pages. And of course, Brett and Corey can't read yet so we just read the chapters to them as the story unfolds. Even if we are a little scattered all over the pages at least we are all reading the same book. It is a good book, full of twists and turns and exciting characters. There is heartache and drama, excitement and adventure. Confusion and suspense and yet it is full of hope and promise. Oh and did I mention the Author of the story? Wow!

"Let us fix our eyes on Jesus, the author and perfecter of our faith.."
Hebrews 12:2


UPDATE:

We went in today as planned, gave blood, got his port accessed, prepared for the chemo, but were then sent home when the doctors realized they forgot to order an echo-gram for his heart before beginning this phase. So we are now scheduled for an echo-gram on Wednesday of this week. Please pray that his heart is healthy and that if there is any cause for concern that nothing would be overlooked by those who administer the test and those who read the results. With this adjustment we will begin this phase on Friday instead of today.

CJ struggled a bit this morning as we prepared to leave so I sat and prayed with him before we left. I prayed that God would strengthen him, and see us through the day. I prayed that God would keep our eyes fixed on Him and not ourselves. And then I prayed that God would surprise us today with His presence and care. I asked that we would see His little surprises throughout the day and sense His nearness. That seemed to help CJ and we continued to get ready. But when daddy got up to say goodbye, CJ began to struggle with leaving again. (I think I have to keep those two separated)

Usually, CJ relishes being able to sit in the front seat with me and have me all to himself and we would talk the whole way there. But not this morning! Today, he climbed in the back seat (almost as a protest to having to go) and he did not speak a word to me the whole way there. I began to try and engage him at first and use the wonderful art of distraction I have really learned to perfect over these past few months, but for some reason I sensed the Lord asking me to leave him to Him. So instead I prayed and kept silent. I was willing to talk if he wanted to but unless he engaged me I was going to wait. After a few minutes, I was tempted to put on some worship music to cheer him up but realized he needed more than just worship music. So I put on the Bible on CD and we listened to the book of Hebrews. Have you read Hebrews lately? Wow! That is a rich book! This is just a smattering of what CJ heard today on the way to the hospital....

"Therefore, since we have a great high priest who has gone through the heavens, Jesus the son of God, let us hold firmly to the faith we profess. For we do not have a high priest who is unable to sympathize with our weaknesses, but we have one who has been tempted in every way, just as we are-yet was without sin. Let us approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need." 4:14

"In bringing many sons to glory, it was fitting that God, for whom and through whom everything exists, should make the author of their salvation perfect through suffering." 2:10

"Since the children have flesh and blood, he too shared in their humanity so that by his death he might destroy him who holds the power of death-that is, the devil-and free those who all their lives were held in slavery by their fear of death......because he himself suffered when he was tempted, he is able to help those who are being tempted" 2:14

So I would say that he was visibly less agitated when we got there. The amazing power of God's word to break strongholds, and soothe weary souls did its miraculous work. We stopped to get him a muffin in the lobby and he noticed they had hot chocolate. We never had realized this before all the times we had stopped. So he ordered a cup and when he were waiting for the elevator and he was sipping his hot chocolate, he said, "Mom, do you think this is one of the surprises from God?" I just smiled and said, it very well may be! God completely understands the warmth of a good cup of hot chocolate! Combine that with some scripture and you are set! And as you know from above, CJ did not receive any chemo today. He was deaccessed and allowed to go home. Now that was a surprise! And since I no longer question God's way of answering prayers...we accept it as His gentle reminder that He sympathizes with our weakness. He sensed CJ needing an extra day or two to begin this phase and we thankfully receive it.

Love to you all...the George Family