Saturday, January 23, 2010

Always and in All Ways

I took CJ to the hospital for his blood counts this past Friday and they are back up so we are resuming chemotherapy and getting back on schedule. Since his counts were up, we walked over to the main building to visit his Poppa Enzo who had just had a port surgically placed his chest, began aggressive radiation, and will be starting chemotherapy very soon. The port that his poppa got is the exact same one CJ has so he wanted to show his Poppa how it works and talk about what to expect. It was really something to see this little guy with his big Poppa sharing something that no one else in the room can fully comprehend. CJ drew him a picture and I noticed he wrote, "Welcome to the club!" on it. I guess it is a club no one really wants to be in and yet we are all finding ourselves in it in one way or another.

My daughter Alibrandi, who is 13, wrote her grandma a letter this week that I think really expresses "the club" well. It reads..."I know you may be very afraid of everything going on. Your body is not fighting cancer, but you are in a different way, from a different perspective. Poppa can not fight this cancer alone, nor could CJ, but he has God and you and all of his family on his side so Poppa can fight, and even beat this cancer... "

Until I read that in her own handwriting I guess I never realized that she looked at herself as 'fighting' cancer too on behalf of her brother. And yet deep down I know that is exactly what she has been doing. I can not express enough how much cancer is a family disease. Ironically, it simultaneously devastates and unites a family in ways nothing else can.

The siblings sacrifice, suffer and struggle like you can not even imagine. The grandparents ache doubly for their suffering grandchild and their hurting child. The relatives wrestle to be supportive and understanding. The child who is sick copes with the balance of fighting to survive and fighting to forget, even if only for a little while. The parents....there are no words adequate.... it is always with us. It hurts always and in all ways.

With all that I have seen this last year through CJ and all the families we have had the privilege to meet and help, I am always amazed at how deep cancer pervades. This week we were doing a little project with the kids and as we asked them to tell us a little about what this past year has been like for them. Neither Allie nor Brett could get through it without crying the whole time. Chris and I were stunned. We knew that it has been hard on them of course but to see them like that was unexpectedly heartbreaking and painful.

Only time will tell how deep cancer will pervade into our life. CJ is still in the battle for the next year at least and his Poppa is just entering the arena. I pray earnestly that our family we will land on the "unite" side when all the dusts of devastation settles. No matter how much I lose and how much pain I experience, I take great comfort and courage that no matter what cancer can take from me it can not separate me from the love of God. "For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." (Romans 8:38) The man who wrote those words went on to say in the very next sentence that he had "great sorrow and unceasing anguish in my heart." I can testify to that. I have great sorrow and unceasing anguish in my heart. I feel like I have taken so many blows recently that the eyes of my heart are swollen shut with the pain.

Thankfully, God performed a HUGE UNDENIABLE MIRACLE in a friends life recently who also has a child battling cancer and it allowed me to open the eyes of my heart just enough to gaze upon His unmerited and bountiful goodness to us in the midst of terrible and devastating circumstances. He is at work!

So when I am overcome by what I don't know and don't understand, I cling to what I do know. I know that God is with me! I know that God is Good! I know that God is just! I know that God sees! I know that God is in complete control even when I am holding on for dear life. I know that God has already secured the victory and conquered death so that I may live. I know that God loves me always and in all ways. I pray that you know this too as you navigate your own obstacles. Forget what you don't know. Cling to what you do!

I can never thank you enough for the words of encouragement that you leave for our family in the blog comments. You can not understand what they mean and what a a lifeline they are until you find yourself in the midst of something like this.

Update: CJ is doing well as he resumes his chemo. He will have chemo through the port this Friday at the pediatric oncology office. We pray he does not struggle with side effects and does well with the port access.

His poppa is also home. For those who have asked...he will have radiation for the next two weeks followed immediately by aggressive chemo. This is a bit unusual as they typically allow time in between but his cancer is too advanced for that. We surrender him to the Lords healing hands and ask for a steady recovery just as CJ has experienced thus far. I pray no one else in our family will join their club.

Friday, January 15, 2010

Prayer Request..Quick Update

We need your prayers for our family. I don't know where else to turn except to the Lord and to all of you that God has placed in our lives as our prayer warriors.

As most of you know, CJ's Poppa Jerry passed away three months ago unexpectedly and the family has been dealing with pain and confusion over the sudden loss ever since. Today we found out that CJ's Poppa Enzo is in very serious condition. A large tumor was found in his lungs as well as other parts of his body. He is in the hospital and all we know right now is that it is "serious" and he will start radiation and possibly chemo right away. We are begging you for prayer for him, my mother Paula and for CJ and his siblings as they are struggling to understand why so much is happening to the ones they love.

CJ wrote his poppa a letter yesterday telling him that he knows how scary what he is going through is and that he loves him and to trust God for strength. Imagine a 10 year old encouraging his 5o something year old grandpa to be strong through cancer and that he knows what it is like. I cried when I read it and my mom said his poppa cried as he read it too.

CJ is at the hospital getting his blood counts with his dad. As I type this they are waiting for the results. I pray they come back in normal ranges and they don't increase his meds anymore at this time. He was very sick last Saturday morning from increase in the chemo and was throwing up all morning. It was very sad to see him like that and we are using other meds to counter the nausea that comes and goes. He id doing better now but has to take that high dose again tonight so we are hoping he will not be so sick this time.

(Chris just called me and said CJ counts came back and he is neutropenic which means his counts are low and he is at high risk for infection. This is a result of the high doses of chemo he had last week and on New Years Eve. They will hold all chemo for a week and retest him. I guess I can look at the bright side....he won't be throwing up tomorrow morning since he doesn't have to take his chemo tonight!)

Thank you for praying for our family and for sticking by us through all of this. I still can not believe this all started a little over a year ago. So much has happened since CJ's diagnosis. So much sadness and loss and yet so many miracles and joys as well. When I struggle to understand why so much is happening in our family, I am reminded that we would not truly know joy if we have never known pain. We can not really appreciate gain if we have never experienced loss. We can not rejoice if we have never mourned. How do I value happiness and simple things if I have not suffered through sadness and difficult things?

CJ's grandma Paula and Poppa Enzo

Thursday, January 7, 2010

Happy New Year with a Bang!

CJ rang in the new year with a fresh dose of chemotherapy on New Years Eve. But he did it with a bang. Literally! As each nurse or doctor came to see him he was ready and waiting with a confetti popper under the sheets. At the opportune time he pulled the string....Bang! Confetti flew everywhere and the nurse about fell over! It was really cute. Thankfully, he was smart enough to make sure there were no needles in sight when he pulled the string. He about gave Lotsy Dotsy the Clown a heart attack.

After he scared the nurses right out of their scrubs, he wasted no time enlisting them in his plot to get the doctors as well right before he was put to sleep for his spinal tap. One of his doctors stands on one side of the bed preparing for the spinal tap while the other doctor, the anesthesiologist who administers the meds that put him to sleep, stands right over him on the other side of the bed. (You will see it in the pictures below).

Once they hook up the "juice", which we call "milk" because it is white, he only has a few seconds before he will start to drift off to sleep. So he was ready and waiting. As soon as the milkman started to push and CJ felt his eyelids getting heavy, he announced, "Before I fall asleep, I want to wish you all a happy new year." He pulled the string. Bang! Confetti flew everywhere. Then he murmured as his eyes were closing, "Seeee yoooouuuuu sooonnnn," and within seconds he was asleep. It was so funny! He got them good.

Unfortunately after all the laughs and silliness it was all down hill. Maybe it was his own fault for getting everyone so flustered with his silly tricks, but for some reason the doctor could not get the needle in the right spot. This has never happened! CJ has five oncology doctors and four of them have routinely given him spinal taps. Each has their own unique technique and all of them are very good. Usually, I amazed at how they can plop him on his side, use his hip bones to help find the 'right spot', and insert the needle to hit the spinal cord with precision, and then drip drip drip.....out comes the clear spinal fluid. They fill up a few tubes of it for testing and then use the same needle to insert Methotrexate (chemotherapy) directly into the spine. One poke for the whole process. Smooth as butter. But not this time! Poke one....mothing. Maneuver the needle and still nothing. Maneuver the needle some more....nothing. More....not a drop. Apparently, they don't want to take the needle out and have to repoke him if they don't have to. Maneuver needleagain......nothing.

At this point they take the needle out try adjusting his position. Poke two.....nothing! Maneuver the needle....nothing! Maneuver some more....nothing! Meanwhile, I am feeling so bad for him and yet very thankful he is asleep. He can feel it to some extent because he will sometimes squirm and grunt when it hurts but is unable to wake up and doesn't usually remember it. As she is still adjusting the needle trying not to have to reinsert it a thrid time she suddenly says, "I have blood." I look at the needle to see blood dripping from the end where clear spinal fluid should be and I begin to get really nervous. I don't know if this is really bad or not so I just gauge my reactions based on the reactions of the nurses and doctors who don't seem too panicked and just continue to keep trying to adjust CJ get it in. One nurse is holding him down while one doctor is making sure he stays asleep so the other doctor can get the procedure done. I know many people would probably be upset at this point but I am the type of person that feels sorry for the doctor as she is struggling to get the needle in. She was so frustrated with it and trying so hard that I felt bad for her.

At this point I pray silently and am so thankful Chris is not there. I think to myself, 'he would have had a really hard time with this' and before I can even finish the thought, I hear tap, tap, tap on the door.

I open the door a find Chris standing there so I inform him a soft tone, "They are having some trouble getting the needle in. Are you SURE you want to come in?" He enters the room as they are still trying to get the needle in the right spot. Now I am worried how he will react when he sees the blood so I glance over to see if they have made any progress and I immediately begin to feel queasy. I decide to sit down because I know the familiar feeling about to overtake me. I can vaguely hear them saying something like they 'just about got it' over the buzzing in my ears and that's when I decide I better go out and 'check on the kids'. Chris asked me if I was okay and I gave him that same blank stare I gave him at our wedding when he asked me that same question right before I was about to pass out.
Not wanting him to worry about me too (or look like a wimp) I answered, "I am fine. I just want to go say hi and check on the kids." So I leave the room completely oblivious to what is happening to CJ at this point and just thinking 'As long as I can make it to our cubicle and sit down for a minute, I will be fine." Unfortunately, our cubicle was all the way at the other end of the ambulatory treatment area we were in. Amazing how it never seemed far before until that day. I started walking. I could feel the flush of my face, hear the buzzing getting louder, and was losing the the feeling of my lower legs. Still, I willed them to keep moving. I remember thinking, 'Just get there Dawn and you will be fine. Don't stop for anything!' So that is exactly what I did! I made it to our cubicle and vaguely noticed my kids were there and mumbled a pitiful 'hello' before I plopped down in the chair. Poor Allie!(my 13 year old daughter) It took her a minute to realize something was wrong.

I sat down and fanned my face for a few minutes, prayed, and recovered. I guess I was out of the room for about 5 or 10 minutes when I suddenly remembered.......CJ! Unsure if they ever got the needle in I decided to brave it and go back. Thankfully, when I went back it was all over and went fine. He was still asleep and dad was standing over him at this point just waiting for him to wake up while the nurse continued to administer some other chemo meds through his port. Chris looked up and me and said, "Hey, are you Okay?" To which I of course replied nobly, "Fine! I just wanted to check on the kids!" (Shhhh! Don't tell him! He thinks I'm brave!)

CJ eventually woke up and was completely oblivious to all that happened. His doctor was so sweet and told him she felt so bad because she had to poke him three times and he may be a little more sore than usual. I give her credit. I wouldn't have told him. It's not like he can see there are two more holes than there should be in his lower back.

We were home by mid afternoon on New Years Eve and he was tired. He dealt with the 'itchy face' side effect for two days and was frustrated with that but overall he did well. We began steroids to rebound him from the chemo and he just finished that regimen. He gets self conscious because it immediately swells his face and belly when he is on them. Now he is off and beginning to get back to normal. We will go back in a week to do counts and another week after that for more chemo.

Although having chemotherapy wasn't the ideal way for us to end the year, it was fitting and kept us right where we belong as we enter into another the Lord's feet; dependent on His mercy and grace in our time of need. We ended our year tired yet very grateful for all God has done in and through us this year. We are grateful for CJ's continued healing. We are grateful for all the blessings He has poured out on our family and for all the blessings He has poured out through our family.

I must admit that gratefulness is a difficult emotion when you have recently dealt with devastating loss, but we are exhorted to, "be joyful always, pray continually, and give thanks in all circumstances for this is Gods will for you in Christ Jesus." It isn't always easy but the right focus helps. CJ has that focus! Last night we were encouraged to give thanks during a time or prayer with our home group from church and after some others prayed his little voice was like sweet music to my ears when he began to thank God for chemotherapy of all things! Thank you CJ for inspiring me to be thankful even for the challenges before me.

This year we are fine tuning our focus even in our thankfulness. We are challenging ourselves to consider if we are we more grateful for the gift or the Giver? Are we more thankful for the healing or the Healer? Are we more thankful we are saved or for the Savior? Jesus healed 10 men from leprosy on the road to Jerusalem. You better believe after living with leprosy for any period of time, every single one of them was thankful for the healing! Of that I have no doubt. But only one was more thankful for the Healer than the healing and came back and threw himself at Jesus feet passionately praising Him. (Luke 17) So this year, I hope that is where you will find me.... at Jesus feet praising Him passionately. Happy New Year!

CJ just after he got the doctors with his new years gag

Asleep and ready for spinal tap

More chemo

Dad and Corey waiting for CJ to wake up

Thank you for continuing in steadfast prayer for our brave CJ. We remind him continually that he is brave not because he is facing all of this without fear but because he is facing all of this regardless of his fears.

We would also like to request prayer for some other kids that are in this battle.
Sweet Mackenzie (5). who is facing 'minimal treatment options' being available and yet her cancer is progressing. She will be getting scans this Friday. Please pray for miraculous results and for the Lord to lay a treatment plan on the mind and heart of one of her doctors.

Please pray for sweet Ellie (7) who is 'in it to win it' during some very difficult stages in her recent relapse and treatment.

Pray for Andrew(7) who is in the final stages of his battle. Please pray for his peace and comfort as his cancer progresses.


Truman and Sam who are both recovering from recent amputations and still battling through chemo to be completely cancer free!

I could go on and on....the list is long and heartbreaking. The prayers are needed. Pray for all the kids battling this disease.