Monday, February 15, 2010

Two Sides of a Rare Coin

I apologize I have not updated the blog in so long and I am grateful to those of you who have emailed me asking for updates. I am so thankful you really do want to know how we are doing enough that you reach out and ask for updates.

I have been asking myself why I have not written more and more often. I have tried to make excuses like to myself like, I don't think people really want to hear all of this or; I don't know what to say; or even that I don't have the time now that we are running the non profit...but none of those are really true.

The truth is I am afraid of what I WILL say. The truth is, when I write....I feel. And I have been avoiding having to feel the words in order to express them. I have been feeling so much lately in regards to cancer, life, and death.

Having said that and having apologized for not updating more, allow me to update you on CJ.

First let me say, CJ is doing well physically although we had a recent scare. Or should I say 'cause for concern'. We recently went on a small camping trip to Jonathan Dickinson State Park. Dad and the boys have been wanting to do this for a while. You know the whole manly need to start fires and play with their pocket knives and sleep on the floor. No offense men! I grew up with all sisters and we camped all the time...only in a motor home. My father was a wise man. He loved to travel and camp. He had three daughters instead of three sons, so he bought a motor home and off we went. Not this family however. We did the whole tent thing. Needless to say, I envied all the other campers with RV's and generators running while we slept in the 30-40 degree weather.

Everything went rather well except CJ picked this particular weekend to start experiencing back pain again. It was so eerily similar to how this all began back when he was diagnosed. He would offhandedly say, "My back hurts, " and point to that same area where the tumors were found. Chris's heart rate would immediately increase and I would inwardly cringe knowing what it was doing to him. Not that I wasn't worried at all, but I am more rational in that area. After all, CJ did just sit a car for over two hour drive. My back was hurting, so why not his? But that did not compute so simply for dad! At one point he even wanted to pack up and go home. After reconsidering and calming down, we finished the two night trip and headed home. CJ's back pain has seemed much better ever since so that is a relief.

We took him in on Friday for counts and I spoke with the doctor about his back. She said it could be the spinal taps. I, however, disagree wholeheartedly! He has been getting spinal taps regularly for 17 months and never had lingering pain because of them. The last spinal tap was weeks before and this is the original tumor site so that can't be ignored.

Then the doctor said it could be residual from the original tumor. The tumor was wrapped around the lower spine at the base of the tailbone (hence the back pain). The tumor has left scar tissue and probably some minor damage so he may always be sensitive there when the weather changes, or he sits for too long, etc... "Like an old person," she described. CJ thought that was funny and eyed me as she spoke. Now he tells me he is an old man already.

Humorous or not, that explanation made more sense to me. I would still prefer some scans to reassure me further but they are not scheduled until September and I realize he does not need to be overly exposed to scans either without more reason. All those scans have lasting effects and risks that can cause difficulties later. So all things considered we are happy with that answer and will evaluate his pain and blood counts as a way to observe this.

His blood counts are back up so we are increasing his chemo dosing bit by bit. I must confess I had no idea that the 'maintenance phase' of his chemo would be so complicated and constantly changing. His blood counts are all over the board and we are constantly adjusting his dosages. I am so thankful Chris is so good at organizing all of that. He keeps track of the doses and times and makes charts to keep me from forgetting which is a MAJOR problem I have. Isn't that ridiculous? I actually forget to give my son his chemo meds! Should that not be the MOST important thing on my mind before anything else? Yet, I will get up and get busy with making breakfast, cleaning messes, taking calls, laundry, teaching school, dealing with a busy toddler or whatever and before I realize it...."Oh no! It's Monday and CJ was supposed to take this or that medication." There is a chart Chris has made for me to follow but somehow I still forget or let time get away from me too often.

For the most part, CJ is on track with his "treatment road map'. He will be entering Course 5 of Phase 5 in a couple weeks. This course will carry us through to September 2010 with the 'end of treatment'. Seven more months of chemo to go! I can't believe he has been on chemo for 17 months now.

You may be surprised but I really don't think about think about the end of treatment at all. I can't yet. Too much can change between now and then and I don't want to build it up for him and make all sorts of promises to him only to have them ripped away for any reason. So we wait, and we secretly hope but do not really speak about it too much. It is always a guarded subject. I almost asked him about planning a big end of chemo party but felt a grip on my heart that made me pull back. Not yet! It's too soon.


In addition to our family camping trip, we received a call the following week that there was an opening if we wanted to take it at a family cancer camp in Orlando called Camp Boggy Creek. We have been once before and we eagerly accepted and made last minute plans to attend.

This camp puts on family weekends and summer programs for families battling life threatening illnesses. This was Cancer Family weekend. As I said, we attended before but this time was even better in that we knew what to expect and therefore we were a little more relaxed. They assign family 'pals' to your family for the weekend and we had the three most amazing young women assigned to our family. What a blessing. Thank you Cory, Rachel and Julie! You are etched on our hearts forever.

I know these young women have no idea the impact they have on our family. None of them have kids of their own yet so I don't think they can fully appreciate what it means to take four kids out to play so mom and dad can sleep in a bit. Or stay in with the four kids and play so mom and dad can go for a walk or rock in a rocker. Or just be an extra pair of hands and ears and eyes to make the weekend that much more relaxing. They are so wonderful to all the kids and understand the gravity of the situation without acting like it. So appreciated!

At one point, while we were exploring the grounds, we came upon a small path that opened to very special place in the woods. It was very peaceful. Nestled by a large pond. Moss dripping from the trees. Benches lined up like a church facing a heart full of stones. Stones with names on them. Dates on them. I realized these were the names of kids who had attended this same camp just like us. Kids who are no longer with us. Their battle is over. C

CJ saw the stones and walked over. He just stood staring at them. I can't help but wonder what he was thinking. Does he think poor kids...or maybe...lucky kids but poor family. Or does he think, I wonder if my name will ever be on a rock hidden here in the woods. Or maybe he thinks nothing at all and just wonders about each one. What kind of cancer they had. How long they fought. What were they like. I took some pictures of him at this serene place and I will attach below.

Beyond that, the weekend ends off with a skit or song or dance performed by these kids with cancer and their siblings. And the family pals get right on up there and wear whatever silly costume the kids want them to and sing whatever silly song the kids want them to and do whatever silly dance the kids want them to. Most of these family pals are college students or recent graduates. They are there volunteering their time with these families. They are up on that stage doing what most of the world or at least people their age would probably consider making a fool of themselves. But these young adults know better and I envy them. I wish I knew at that age what they know and understand. They are no fools my friends. They are wise beyond their age I only wish it did not take me going through this to realize it.

During the skit as we watched these kids perform, I leaned over and told my husband that this show was more valuable than any opera or Broadway play you could pay to attend. You sit and watch a kid about 10 years old who still bears the effects of recent chemo treatments, who can't sing worth a lick, walk up to a microphone and sing 'THE CLIMB'. It is profound my friend. Mylie Cyrus herself could not out perform him at that moment!

In addition, we were also pleasantly surprised to arrive and find a family from Gainesville we have been wanting to see and spend more time with. We met them at Camp ROCK back in Sept. of 2009. They attend a sister church to ours. Their son Sam has a rare form of bone cancer called Osteosarcoma. He has an amazing story. He was diagnosed after CJ and has given his leg in his battle against this disease. It was great to see him up and walking on his prosthetic. He just had his last chemo treatment a couple weeks ago and his end of chemo scans are coming up soon. Please remember to pray for Sam to have clear scans! Here is a link to his site.

It is amazing to be with all of these kids. Some have been battling the disease for YEARS. Some for months. Some are at the end of treatment and some have just begun. Others, like us, are still in it. One thing that amazes me about cancer treatments is the complete variety of treatments. For example, Sam has a much more serious and rare cancer. His treatment was more intense than CJ's and required him to inpatient to receive chemo where CJ has a lot of outpatient treatments. Sam had higher doses, but a shorter overall plan. CJ has lower doses but a longer time of treatment. We meet some kids who have three months of HELL for treatment and then it is done. Or six intense months with lots of hospital stays. Then there are kids like CJ who have two ore three years of chemo with what I consider to be less toxic than some of the others. Interesting!

I am just pondering some of the things that sit on my heart and mind in regards to this whole world of childhood cancer. Attending camps like this open the doors of your mind and heart for such issues to enter in.

Spiritually CJ seems to be doing well. Emotionally, he is still digesting all that is happening to him and to his family. His poppa starts his first chemo today after 2 weeks of intense whole brain radiation and he has deep feelings and concerns for him. It is hard for him to see his poppa going through this, but he is grateful to be able to share it with him in a special way and answer questions his poppa has. We are baffled by all the endless complications and frustrations that keep arising in regards to Poppa Enzo's care.

Not surprisingly, CJ told me that he is shaving his head for his Poppa like others did for him. That really touched me. When others shaved their heads for him I don't think he quite understood it and now that it is someone he loves he wants to do it too. At only 10, he has been on both sides of that very rare coin!

For Valentines Day I will leave you with this....

"Greater love has no one that this, that he lay his life down for his friends." (John 15:13)
Not to challenge scripture in any way but please consider this....
Jesus laid is life down for His enemies. (Romans 5:10)
Is there any more amazing love than that?



Path leading to...


...church in the woods





CJ looking at the stones






Reading the names


10 comments:

Bill & Mardy Freeman said...

Love, love, love reading your updates whether they are melancholy, newsy or joyous. You let us into your life, into your trial, and we all benefit by seeing life from your mommy-heart perspective. Please remember that you and CJ and all your crew have a place to stay in Gainesville if you are ever visiting or passing through.

Anonymous said...

Dawn,
Yes, we love updates and are ALWAYS eager to hear how your family & CJ are doing! I was reading some of your blog to Lindsay, and I can never do that without tearing up. You have such a way of expressing yourself which places me right there with you, heart and soul. Thank you for sharing and letting us in your heart's thoughts! we love you & are thinking and praying for all your family, including Enzo and your mom! Aunt Karen

Noah said...

Hello George family,
We are always praying for you all. We are glad to hear that this may be the last year of CJ's chemo. We will be praying for that. Also we pray that God would be with you through these last steps. We pray that you would stay strong in the Lord. He is always by your side and will never leave you. We love you all!
God Bless You!!

Noah S.

Harold said...

Dawn,

Wow, I had to read the last 3 blogs to catch up as sad as that is to say. I quess Harold changed out the computers or updated the email or something so I haven't been getting the updates. I am going to sign up for them now. The posts are so moving and full of so much love. I ache for what you and Chris have to watch CJ go through. I am in awe of your bond with Our Heavenly Father. I am so proud of CJ, Allie, Brett, and Corey for the being such amazing kids and support for each other. I hope we can get together soon. I have valentine's for the kids and kevin has one for you and Chris..But, Kyle has a cold. So, I will wait till that clears up.

Love you,

Sis

Anonymous said...

Hi Dawn,
Thank you again for making the time and effort to share your heart and mind. It is wonderful to see, how you and your family, have understood how frail life is. But because of that "frailty," it is a blessing to be alive, so that we can give and we can love. Thank you for sharing God's love. Wilma

martha said...

Dear Dawn,

My prayers are with your family.

With Love,

Martha

But the salvation of the righteous is from the LORD;
He is their strength in the time of trouble. And the LORD shall help them and deliver them;
He shall deliver them from the wicked,And save them,Because they trust in Him.

Psalm 37:39-40

somewhereintime said...

The pictures of the camping are beautiful. Its so nice that there are people that set these things up, a sort of retreat and special family time.I didn't realize CJ was in pain, how scary.At his young age he can now relate to so many...we are so prone to take many things for granted.

Thank you for the glimpse into your family's life and feelings.Praying for CJ & your fam. as he continues being a soldier and fighting this battle in all sorts of ways.

Much love,
Alexa

Sonia said...

Dear Dawn, glad of reading this up date. Antonio sow CJ when he went to see Enzo and he told me he looked like any healthy kid, I´m glad of that and very hopeful. We now are very worry about Enzo and for Paula too because is being very hard on her. I know that Enzo will fight with this the best he can Antonio and Andres are trying to support Paula and don´t leave her alone with him. Your doubts are very understandable looking at the whole picture and for the experience you all ready have. I only can recommend you that listen to your instincts and to the messages of God that you always find.
Lots of love,
Sonia, Andrea,Alejandra and Antonio

Cory Mulligan said...

Dawn,
Please tell CJ that I was thinking about him and that he is in my prayers. Well actually your whole family is.
Thanks again for sharing your weekend at camp with me.
Love
Cory

Anonymous said...

We have not posted in a while but wanted to share some scripture with you that we're sure you and your family turn to time and time again.
A friend of ours joined your club a few months ago when she learned she had breast cancer. She is 40. Inspiried by you and your family and how you use your blog to make this a CHRIST thing and not a cancer thing, she has begun her own! She began it with this story. . .
"I was reading in a book about the names of God and it was talking about the name Jehovah Nissi- our banner. It said that in times of war, they would raise up their banner and the people would rally around the banner. Then it talked about when the Israelites were in war against the Amalikites, that as long as Moses held his staff in the air, they were winning the battle. So, two people held his hands up until the battle was over. I felt at the time that God was telling me that I was about to enter a battle, but that He would send people to hold my hands up while the battle was going on. And that is exactly what He has done. So many of you have been praying for me, reaching out to me, sending me meals, offering your help, calling me, emailing me, etc. I know I can't make it through this storm alone. I am so thankful for the family and friends that God has placed in my life to hold up my hands until this battle is won!"
What the story doesn't tell is how she came to start this blog. . .
She has been holding up your arms, George family, throughout your battle over the months. (We shared your blog with as many of God's faithful as possible!) And now, through the words and inspiration of your blog, you are holding hers up. . .by giving her the courage and focus of mind and spirit to begin her blog, because she too does not want this to be a "cancer thing. . .but a CHRIST thing!" Her blog will be therapuetic. More importantly, like yours, it will be her testimony on how God is working in her life. And so the Gibson family of Northern Indiana (cousins to Trish and Bryan McPherson of Boca Raton) look forward to rejoicing with BOTH of you when your battles are through and you are victorious. In the mean time, we are holding you up, CJ!

Peace to you, George family!
Chad, Demi, Mary Jordan and Sean Gibson