Thursday, February 26, 2009

This is obviously not a vacation.....

It seems as though our little boy is slipping away from us. He is just not the same child. He no longer wants the kids or me around. Diane and Chris are who he wants to be with. He did allow me to play putt-putt with his gang today. I was able to pick him up and hold him a couple of times. I was even able to put my nose in his hair and smell him again. For those of you who have followed my blog a while you know that is one of my favorite things to do. There is something about a small child’s hair and their smell. It just makes me feel so close to him. I’ve missed it terribly. Throughout the game he worked very hard to walk from one hole to another. His limping is getting very bad and he is losing his muscle tone also. I’m not sure if the radiation worked. After he would get his ball in the hole he would sit down near the hole and wait for us to finish. He seemed to drift far away with a blank stare in his eyes. He doesn’t want you to speak to him unless he speaks to you first. He also does not like to repeat himself. It makes him so angry.

It appears that we will be leaving Saturday afternoon. I’m almost thinking that we need to get 3 seats away from their 3 seats just to keep the peace. I think we need to get home and be close to his doctors. There is a bit uneasiness about teetering on the edge of going to the hospital. I’m sure they have very good hospitals here but they are not Georgetown. The doctors are not his doctors.

Justin and Daniela seemed to be having a pretty good time. We’ve been trying hard to let them do as they please. Justin has met a boy and his brother who are from Vermont. They have spent the last 3 days together. Daniela has been playing with them and today she found another young boy to play with. I think I will rent bikes so we can ride down the road. I feel like the best I can do now is keep the other two kids away and everyone will be happy.

Thanks for reading…

Morning Update: Diane just woke up. She said that she and Cody were laying in bed last night and he told her that his tummy hurt and it feels like a Great White shark is biting him. She said that maybe you will feel better in the morning, he said "no I won't." It is really breaking her heart. She watches him at the pool or playing putt-putt and she says he is so depressed. He watches the other kids play and he knows he just can't do it. I believe Max's dad. The darkest days are yet to come. This is just heart breaking.


Lilye said...

I came across your blog and my prayers are with you and your family. There are no words that can ease any of these but do know that I have asked several of my friends to keep your family and Cody in their prayers.

Your blog is an inspiration to me to remember the blessings of my children in the good days and bad days.

Anonymous said...


Wish I had some words of wisdom to pass on, but I don't. Just want you to know that we are with you in spirit. I know that it must be hard to be away from the hospital and caregivers you have come to know and trust. I will pray for a peaceful and safe return home on Saturday. Love to you and Dianne, Cody, Justin, and Daniela. Thank you so much for continuing to update all of us on your journey.


Anonymous said...

Oh mickey and diane I wish there was something I could say or do that would help get you through this. But no words can convey. Yours in prayers.


Cameron said...

I also wish there was something that I could say or do to make it all go away. I am so heartbroken that Cody is struggling so bad. I pray for a safe and easy return home. I am sure you will be comforted by the fact that his doctors will be closer once you get home. Continuing my prayers for all of you and sweet Cody.

Meg said...

I will continue to keep your family in my prayers.

BIG MO said...

I feel so bad, as your mother I
can't even help you except to let you know I am here for you and Diane, as you two are there for Cody and he loves you all very much. You have done all you could.
I know you both must feel so
helpless. I'm still praying for a
MIRCALE and if that don't happen,

Anonymous said...

Having lost a child at 6 myself, I understand the smell. Before I lost Scott I took some of his clothes after he was changed and put them in a sealed bag. I still have them. I have actually opened one years later and the smell was still there. That is one way I am able to keep a little piece of him with me.
Ernie Cessna

Kelli said...

I'm so sorry. I know it's hard to know what he is thinking or how he is feeling right now. I'm praying for you all and I hope that the days ahead will somehow improve. God bless you and know that we care.

Anonymous said...

I'm sorry. Like everyone, I wish I could do or say something to heal Cody and make everything all better...but I can't.

I'm sure you "know" his withdrawl isn't personal, though it feels that way. He still loves his whole family and always will.

Still praying for a miracle, too.

Vonda and John said...

I found your blog from Abby Riggs. I have been following and praying since you all made the decision to go to the beach.

I agree that the smell of a child's hair (dirty or clean) is the most awesome smell in the world. And it does help feel close to them.

I will pray for peace for Cody and that he lets you in.
My heart hurts for your family.

Rhonda said...
This comment has been removed by the author.
Rhonda said...

I will keep praying for you all..
Praying that he will not be in any pain..That you will make it home,I do know what it is like to be with your child's doctors.

Carol G said...

Mickey, Even though Cody won't have much to do with you right now, I am glad to read that he is still playing. He wants to play, and I'm glad for that. I've had a knot in my stomach for the past few days hoping that things were going OK with everyone.

I will pray specifically that he won't need to go to the hospital in Florida, as well as an uneventful trip back home.

Anonymous said...

Mickey, I know all this is tearing you apart. Just know that I'm praying for you, Cody and the rest of your family. Like another said don't take any of this personal, it's not. I know that Carl suggested that you may want to look into a hospice. They have information on what to expect during this time. One of those is that the patient will start to pull away. This information will help you understand what's going on. I will continue to pray for a miracle for Cody. Hang in there!

Teresa (tcoplen)

Trish said...

Mickey - I'm still here praying for all of you. You are all always in my thoughts. I am so sorry.

Andy (Max's dad) said...

Probably my most treasured memory of Max's life came on the last day he was alive. Though the cancer, chemo, radiation had taken their toll on his body, there were moments of lucidity in him that shone through like the flash of a thousand suns, snapping me out of the dread I carried in me of the future, and into an appreciation of my son's present. You have the darkest days just ahead of you Mickey, I'm sorry to say. Cody sounds amazing. Thank you for sharing him with all of us.

Glorybelle said...

Mickey I know you don't want to hear this but my heart is just breaking for you. I can't imagine what you must be going through as Cody's dad. I know what I might feel like as a mom... but oh I cannot fathom what a father in your shoes must be going through. I am just so glad that Cody has such a sweet, caring, loving family.

Anonymous said...

May God ride home on the wings of the plane Saturday and take each step with your family until healing takes hold!!

Samantha said...

I am so sorry, Mickey... there are no adequate words. Just know the prayers are constant, prayers for you all.


Anonymous said...

There is a lovley boy, named Cody
His path in life is worth noting
He plays with his little men
This make people grin
He lives on coast of the east
His little body carries a beast
Adventure on high seas
So many brought to there knees
We are all but strangers to him
He has filled our hearts with love to the rim
We sang of praise for his parents
They only deserve merits
Family so near family so far
They help raise compromizing bars
One of the lights in your life starts to dim
The Lord Savior ask that you turn to him

Dottie O said...

It must be so hard to keep your distance when all you want to do is hold him and smell his head. Maybe he thinks he has to be brave. I'm glad Justin and Daniela have some diversion and you have some time with them before going back.


Monica Cassier said...

I think of your family and pray nearly continually for you... the Johnson family is always "there". Cody isn't feeling good, that's why he is grumpy. Don't take it personally - he loves you.
Hang tough, Mick.

elizabethnyc said...

I don't have anything to add that everyone else hasn't said, but know I'm keeping you and your precious family in my prayers through day.

Anonymous said...

Wish I had the magic words of wisdom for you but unfortunately I don't. Know that you are all in our thoughts and hope that you also know you have done and continue to do what is necessary for you and your family. I know it does not compare, but know that you have many friends and family that are there for you and will do anything for you to help. Have a safe and uneventful trip home Saturday and don't hesitate to call if you need something. I will call you from across the pond next week...

John & Cheryl

The Murrant-Johnson's said...

Everytime I read the Blog it gets harder and harder for me to respond, but I also take somethimg away from it. You give me strength, love, a bigger heart, and so much more that I will use for the rest of my life. I now look at my wife and children a totally different way. I learn to value each and every moment with them. I now even smell the hair of my children and wife when I hug them. You are right, it is a wonderful smell.

As I said before Mickey, thank you for making me stronger person and I will never forget you for that.

Give hugs and kisses to Diane, Justin and Abby.

Give Cody a hug, kiss and the strength to make it back home where he can just relax and be in peace.

We love you guys and are praying every minute of the day,

Shirley, Alex, Amy and your little Bro (Alan)

Gettin Older said...

So sorry Mickey, You and yours continue to be an inspiration. Continued prayers for strength and comfort for all of you.

Anonymous said...

Mickey, it is so hard to read your blog. Having an 8 yr old boy - you make me realize how incredibly lucky I am and how precious life is!
I am praying for you always. Cody is in my thoughts a lot.
Lilly (RW)

Anonymous said...

Mickey, it has all been said, but I'll say it again. Know that Cody loves you, he is having a hard time showing it right now but he does. I know you have the strength to deal with everything going on, though you may not feel like it right now. Prayers for you and for the rest of the family. Prayers for Cody to have many moments of his true self.

Susan and Jonathan

Linda said...

praying for you guys and thinking of all of you. have a safe flight back. <3333

Anonymous said...

I am praying for you all.

Anonymous said...

I have no words of wisdom, nor can I comprehend what you are going through. Just know that I am constantly thinking and praying for Cody and your family. God Bless.


Cap'n Ron said...

Hey Mickey,
Just wanted to post up a note to let you know that I'm still checkin' in on you guys. I truly wish there was something more that I could do. You are a special man with a special family.

Sending love from the west coast.


Diane said...

God bless you and your family. I remember my son behaving just like this. Looking back, I'm sure he was just angry that his brother was still healthy and able to do all the "boy things" that he couldn't do anymore but wanted to so badly. And I guess he was angry that we had our whole life ahead of us and his was probably ending. It broke my heart too. I continue to think of and pray for your family. Please don't hesitate to call on me if there is anything I can do for you.

Lori said...

Mickey and Diane,
Surrounding you in prayers, love and support. Praying for an easy transition home where you feel comforted by the nearness of the loving care of your amazing medical team. Sending love to you both, to Justin, Daniela, and dear Cody.

Anonymous said...

When I sit and read your words, the tears slowly come. I, too, love the smell of my children. Just last night I was cuddled with Elijah watching Survivor, nuzzling his little head and neck. Those are life's gems.
I read some of the comments this morning. I agree that Hospice is a wonderful program. Not only do Hospice staff assist with the physical ailments but they have such an understanding of end of life- they support, explain and guide through the process. Some of the most amazing nurses I've had to pleasure of working with.
We will be thinking of you all during this last day of your trip and praying for an uneventful journey back home.
Our thoughts and hearts are with you!
Kelsey (Shawn's)

runnergeel said...

Prayers for you still Mickey. My heart is breaking also.
keep strong

Anonymous said...

continued thoughts and prayers go out to you and your family...


Tammi Kay said...

There are just no words...

Praying for the Lord to blanket you, your children, and Cody with a mighty peace throught the difficult days to come.

runrgrl2007 said...

I am sorry to hear that your vacation has not turned out exactly as you had hoped for your family. My prayers are with you, Dianne, Cody and the kids. You are handling this with such grace and you know that only comes from God. I pary God grants you the peace and strenght that you need during this diffecult time.

Anonymous said...

Oh Mickey, I can relate to smelling Cody's hair. One of my favorite things to do was to smell and kiss the top of both my kids' heads. Sometimes I can actually smell them still!

My heart just aches knowing what you and Diane are going through. I cannot imagine losing either of my children. After all, we are suppose to go BEFORE them, not vice versa.

Cody is not his usual self - he is in pain and probably doesn't want to worry you two.

Continuing to pray for a miracle - continuing to pray for God's grace to encourage your weary hearts!!

Anonymous said...

Mickey: I don't have any words right now but I can tell you I understand exactly what you mean about the smell of your child's hair. I am glad you took comfort in that precious aroma.

Safe trip home to all of you. Thinking of your family all the time.


Frippery said...

We are praying here that Cody and you and your family can have some peace amid all the pain.

Anonymous said...

Sending prayers and positive thoughts to Cody and your family.

As Theresa and Carl have mentioned Hospice, I'd like to tell you that from my experience it is a wonderful organization. Hospice was able to manage my Mother's pain and they were there for support 24/7. They also counsel and lend support to the family (both young and old).

God Bless you all.

Barbara (Mtnrunner)

Anonymous said...

I, like many others, claim no special knowledge or particular insight into your unthinkable situation, but nonetheless feel compelled to reach out and offer a few thoughts as well. I know that whether they are helpful or not, in either case it will have little to do with me.

These times seem so painful and challenging for you on so many levels— trying to keep the family peace, trying to keep Cody as happy as possible, trying to keep yourself together, grasping at moments and smells and trying to permanently etch them into your memory— it sounds draining, exhausting, frantic, and at times numbing.

All you can do is your best. As you seem to be doing, take each situation or circumstance or decision as it comes, and do your best to muddle through. I suspect it will be very difficult, if not impossible, to keep everyone happy all, most, or even some of the time. That's OK. There is no right way to do this; no way that is better or worse, only what you can do and what you can handle. The love and prayers of many people are with you, no matter what.

There is rarely much that is graceful or easy about encountering death's approach and the beginning of grieving. These times can truly divide one's self, between the part that clutches resolutely to hope and miracle, and the part that sees something awful and seemingly inevitable coming ever closer, which demands one brace oneself for it. It is a terribly uncomfortable way to have to live, divided.

Dark(er) days may well be ahead. However smoothly or rockily they go, though, they will not and can not define who Cody is and will be for you. You have shared many times that the boy you see now is "not the same Cody." Difficult as it may be, trust that— whatever happens— those memories and knowledge of who Cody was, before this disease ravaged him, will form the core of how Cody continues to live on in you and your memory. If a miracle does not come— and as a fellow divided human I fiercely pray that it does— in time these days will eventually fade to a sad and heartbreaking epilogue to Cody's life, a vibrant life bigger, better and vastly more beautiful and meaningful than the current times of struggling and awkwardness.

Of course, talk of the future means little now, when the pain is real and raw and immediate. Your son is dying, and that is unfair and agonizing.

So, may you find strength where you can, and recognize that whether you are angry, sad, laughing, blaming, depressed, exhausted, curious or a continuously rotating combination of all these things and more, it is all a part of the excruciating process of saying goodbye much, much too soon.

God bless you. I hope you get to a place where you can recognize and feel that blessing, if not right now, then someday.

Kati said...

Thinking of you Mickey and Diane. You are on my mind day and night.

Little Cody is blessed beyond measure to have parents that love every fiber of his being the way you do. God bless you and keep you through this rough and rugged journey.

Love you guys!

Anonymous said...

Hello. I came across your blog last week and my heart just broke for you and your family. I am praying for you and that the Lord would bless you during your time of trials. Romans 8:28 says that all things work together for good to them that love God. Keep God first in this trial no matter how hard it is. Also my high school class and teacher and also my youth group have been praying for Cody and that the Lord would show his will. I will continue to pray for your family.

Anonymous said...

Though I am at a loss for the right words I just offer up my prayers to your family. I pray for the pain the cease and that the pain in your hearts. Blessings to you all.

Anonymous said...

Mickey, I'm thinking of the five of you every day. Prayers, prayers, prayers.
Tamara (Runlonger)

Emily's Blog said...

I found your blog from another blog and have been reading these past few weeks.
I'm sorry for what your family is going through, but glad that the family was able to have one last trip together.
I will continue to pray for Cody and your family.

Katie said...

I am so, so sorry. My heart is breaking for Cody, for you and your family. I have people on my blog praying for you all- because that's really all that we can do.

I have no words of comfort because I don't think there are any- any that breaks my heart too. Your family is an inspiration to me, and so many.

BreezieGirl said...

Love and prayers...

Anonymous said...

Prayers for a safe trip home!

God Bless

Anonymous said...

safe and peaceful trip home. We are thinking of you. Our hearts are breaking. God bless

John and Cheryl

Anonymous said...


You have been a rock throughout this ordeal, as has Diane. Please take care of yourselves. My best to Cody. He's never far from my thoughts.


Anita Turner said...

I am so sorry that Cody is feeling so bad. I hope he enjoyed his trip to the beach, even just a little bit. Thinking of him and your family during this very difficult time.