Monday, March 2, 2009

Where do we go from here???

There just won't be much good to report for a while. I had to come home by myself tonight. They kept Cody because they couldn't get the oxygen and pump delivered today. He is in such pain that it is unbearable to watch. Today they put him on a morphine drip pump. That is the pump that we are waiting for. They are going to get it started at the hospital before he can leave. He was in such pain today that they couldn't do the radiation. I'm not sure but they may decide to forgo it anyway.

We sat down with the doctor and social worker today. We talked about Hospice and the pros and cons. One issue that has to be researched is how my insurance would handle it if we wanted to hospitalize him if we chose to. Apparently some insurance companies give you a hard time if you turn to Hospice and then decide that you want to go back to hospital care. We also talked about how we are going to tell the kids. We have decided that we will have to tell them tomorrow. Due to his major pain and need for oxygen we asked the doctor how long she thought we would have left with him. She said that because his breathing is becoming more labored and yesterday's X-ray showed the beast is really taking over now it may happen very quickly. Diane pressed for a guess on the actual time and the doctor said it could be a week or two, she just didn't know for sure. We also have to make the decision of where we want him to be when he passes. That in itself is a tremendously difficult decision.

So, now we take it one task at a time, one day at a time. First, get him home. Second, talk to the kids tomorrow and cry together. After that who knows....

86 comments:

Anonymous said...

If only my tears could bring some sort of comfort to the pain which your family is facing...I lift up Cody and your family in prayers I pray for peace in all your hearts and a also for GOD to give you all strength in the coming days and that the discussions with the kids about Cody will go the way you hope. Blessings to you all.
Megan P

Anonymous said...

Praying for God to comfort your family.

Jennifer said...

Praying hard!

Michele said...

I am so sorry that your family is having to endure this tragedy. No child should have to be faced with so much pain. My heart goes out to Cody, and to his parents and siblings for the terrible circumstances in which you now find yourselves. You will be in my prayers tonight, and every night during this difficult time.

romanmegga said...

Psalm 34:18


I am soooooo sorry and brokenhearted for you.

Beth said...

I'm praying for Cody and for your family.

Laurie Sigel said...

I wanted to let you know that your family is being prayed for. You have such a tremendous weight to bear, know that you aren't bearing it alone.

Donna said...

I have been following your story for a week or so, and am praying for all of you during this time...
Donna

Anonymous said...

Mickey my heart is just breaking to read about Cody's condition. I know that you and Diane will find a way to talk about the situation with the family and to help each other thru this ordeal. Please know that you are not alone.


feet

Becky said...

I'm so sorry. Praying very hard for strength and peace for all of you!

Cameron said...

I am so terribly sorry that you are all going through such pain and heartache. I am praying so so hard for all of you. No one should have to go through this...NO ONE! I pray that God will give you the strength to talk to the children tomorrow. I pray for no pain for Cody. It is so hard to bare to read and I can only imagine what it does to you, his parents. Lifting you up in prayer. May God comfort you and surround Cody with His love and hold him tightly in His arms.

christianswithcancer said...

It is hard to type through eyes filled with tears. My heart aches for you all! I am praying for God's grace during these trying times, Mickey!! God bless!

The Murrant-Johnson's said...

Mickey,

All I can say right now is that I am sorry this is happening. It is to hard for me to write much now.

We love you guys and will continue to pray for Cody.

Love you,
Alan (Little Bro)

Cathy Meister Melton said...

I have followed your story for a while and prayed for you without posting. I am praying for you all...especially the other children. What a beautiful boy Cody is. Thank you for sharing him with me.

Aggie said...

We will continue to lift you up in prayers daily. Praying for wisdom as you face difficult decisions, strength and peace as you talk to your children tomorrow, and of course comfort and peace for Cody.

Monica Cassier said...

My love and prayers with you, Diane, and the kids... nothing left to say... May you find the comfort, peace, and love for the days with which you have been blessed. I will always be thankful for knowing the courage of the Johnson family and particularly, Cody.
Prayers to you all and love...
moon

Live to love and laugh said...

I think of your family many times a day and stop to pray for you.
I am praying God will offer you peace, comfort and knowledge in these heartbreaking times.

Sophie's mommy said...

My heart is breaking for you all... I wish I could take the pain away or say something to make it go away. Our prayers are with you..

The lincks

Rhonda said...

I wish i could take all the pain from Cody and your broken hearts..I Will continue to pray for you all.I will pray for you tommorrow as you tell your other kids.

Carol G said...

I will pray for God to give you the right words as you speak to the children tomorrow. They will need you so much as they absorb this. I will be praying for peace, calmness, strength and comfort for all of you during this time. Our Father will be with you. You aren't alone.

MammaG said...

You have had to be the tower of strength for your family! WE are continually lifting you and your family up to the Lord in prayer. WE share your sorrows, your triumphs. You will be in our thoughts today tonight and always.

TiredMamaRunning said...

I'm sorry, Mickey. Please know that you, Cody, and your entire family are surrounded with prayers and love now and in the coming days.

Stacie said...

i will pray for your children and you as you tell them about their brother.

kathy S said...

Hello,
I have been praying for Cody. I cannot imagine your pain and the decisions you have to make very soon. I will pray extra hard for your talk with your children. I have no words to say to you except that I know God is going to take care of all of you. I just pray for your family. God Bless Cody.
kathyS.

Anonymous said...

I found your site through the Riggs and their story of Abby. To see such faith and strength and hope in parents who are facing the "unfaceable" proves even more that there is a God. A God that will wrap you in His arms and see you through the toughest times of your life. God will give you the words when talking to your other children. My heart and prayers are for you all.

Ann Stegall
Wake Forest, NC

Mazzy Blue Studios said...

You are in my thought's....

Karen said...

I have been reading your blog for a few weeks and have been praying for Cody and your whole family. I will continue praying for your family and for the strength to talk to your children about Cody. My heart goes out to Cody in having to deal with such pain! May God bless your family and watch over you all in this difficult time.
Karen

MangoAK said...

I also type with tear filled eyes. I hope you find at least a tiny bit of comfort from knowing there are so, so, so many of us who are constantly thinking of and praying for Cody and for his family.

Always sending prayers of love, strength, comfort, and peace for Cody- but also for his family. Praying that Cody can get some relief from his pain- but also that he can go home today and then that he may stay at home.

My thoughts and prayers are with You All.

Dottie O said...

Praying for pain relief, comfort and the right words.


Dottie

Kathrin said...

I don't know what to other than I am thinking about you. Your is so dear and precious.

Anonymous said...

Oh guys, I am so sorry. I feel so angry, helpless. I just want to scream. If there is anything you need just let us know. I wish I could say or something. I will keep praying.

Anonymous said...

My continued Prayers for Cody and the family!
God Bless,
Bruce

Anonymous said...

I am so very sorry. I have only been following your blog for a short while, but have kept your family and son close to my heart and prayers. I do not know the pay you are enduring but I will pray for some peace and clarity for you all, the doctors, and your children. I pray for peace and painless days for Cody. Know that you are cared for and being prayed for by those you may not even know. Feel the peace of Jesus Christ and feel the warmth of the love here on earth for your entire family.

Anonymous said...

MIckey and Diane,
I fervently pray to God that He keep watch over little Cody, that He provides the two of you the strength to remain the best of parents for all of your children, and that He help Justin and Daniela understand that they have been blessed to have a little brother like Cody, and he in turn has been blessed to have them as siblings.

DollarBill

Monica Cassier said...

We'll be crying with you, Mick. Oh I wish things could be different for you all... Prayers for strength, comfort, and that Cody is free from pain.

Lindsay said...

My heart breaks for you. I am here, praying, hoping....

Lindsay said...

My heart breaks for you. I am here, praying, hoping....

Donnetta said...

My heart hurts for you all. I'm praying for strength for you all when telling the other children.

runnergeel said...

I do not have words to say how sorry I am...I am crying. my heart is broken. I too pray for peace for all of you. for pain-free days. May God guide your words and your minds to ease the pain of telling your children.
karen

Diane said...

I am so, so, sorry. I wish there was some way to ease the pain for your little boy and for you and your family. My thoughts are with you.

Anonymous said...

God will guide and lead you to say the words in telling your children of Cody's situation. I pray he can be at home,with all his family, in familar surroundings, medicated to relieve pain as the "beast"progresses.Hopsice are wonderful people so I hope you may be able to use them. Praying for you guys! Grandma from SpringHill fl.

Anonymous said...

You & your family are in everyone's prayer. My heart comes out to all of you. Stay strong--the Lord always protects us in his own way. lts

Anonymous said...

Prayers of peace, comfort, and strength for all of you. Cody is a real hero for facing down his giants. We're proud to be part of "Cody's Crew" God bless.

Mark, Daphne, Cristina, and Nick

Anonymous said...

It's all so terrible and terribly hard on you all. But some how you are doing it. You're getting up each day and facing it and what The Beast is doing to Cody and your family. You'll some how find the strength to tell the kids today and you might be surprised that they already know or suspect. Nothing is anything but hard in your life right now, including that final decision on where he will rest.

Someone I know loves this song that goes "Breathe, just Breathe". Keep doing it Mickey and keep taking each of these HARD days for what you can milk out of them.

Hang in there buddy.

The Geetah

Anonymous said...

As you hug Justin, Abby and Cody today and you cry with them - know that thousands of hugs are being sent your way and tears are flowing for such a wonderful little boy and family.

Hugs to Cody, Pat (ACCA-NCC)

Anonymous said...

It's all so terrible and terribly hard on you all. But some how you are doing it. You're getting up each day and facing it and what The Beast is doing to Cody and your family. You'll some how find the strength to tell the kids today and you might be surprised that they already know or suspect. Nothing is anything but hard in your life right now, including that final decision on where he will rest.

Someone I know loves this song that goes "Breathe, just Breathe". Keep doing it Mickey and keep taking each of these HARD days for what you can milk out of them.

Hang in there buddy.

The Geetah

Becky said...

God bless Cody and your precious
family. We are praying for you.

Gettin Older said...

Mickey, I feel like I have been hit by truck. I can't imagine what you are going through.

Prayers for wisdom, strength, and grace.

Kirk

elizabethnyc said...

Mickey and Diane, I wish I had the right words to say and wish I could take some of this burden onto my shoulders - and I'm sure that everyone following your story wishes the same thing.

All I know is that you both, as parents to your wonderful kids, have been handling this all with such strength and grace, and with love for Cody, Justin and Daniela in mind at all times.

The prayers continue, for all of you...
ElizabethNYC

Glorybelle said...

I am speechless, I am saddened, I am so very sorry. You are in my thoughts and certainly in my prayers. Please give Cody a loving hug from me. Thanks Mickey.

Anita said...

I am so sorry, I am thinking of Cody and your family.

Anonymous said...

Praying for your little boy and your entire family, especially today when you speak to the children.

Your persistence, courage, love and faith inspires all the way to CT ... Cody's name was mentioned at services this Sunday.

Friend of a friend (Monica C.) Kevin

The Leighton Family! said...

May God grant you and your baby boy comfort on the days ahead. I pray that his pain get under control so you all can enjoy each other. I will be praying that God grants you the right words as you talk to your other children. My heart just truly goea out to you all. Sending lots of hugs and prayers~~~~~~~

robinmartin1234567 said...

I have been following you blog for a few weeks. My heart just breaks for you and your family.
Today is a sad day and I am praying for you family and that Cody's pain is being controled.
No words can comfort you but just hang on to the time you have left with your dear son.
Robin
In Iowa

Kandy said...

I am praying so hard for you guys to have wisdom and comfort at this difficult time.
God Bless!
Kandy

Anonymous said...

I think about you guys every day! I'm broken even reading this blog daily, the tears won't stop. I wish all of our prayers and tears can get you through this.

Kim M.

runrgrl2007 said...

Praying for God's wisdom, peace and understanding during this time.

Kandi Harris said...

Mickey, Diane, and Family,
Losing my father was one of the worst things that ever happened to me but I found so much comfort in knowing that he was in a much better, happier place with my brother who passed many years ago. I visualized them being together with their arms around each other and the warmth and comfort filled my soul. I will always miss both of them, but it makes it easier to see them together.

Everybody has to find their special way of dealing, but I pray you find yours very quickly whether it be through visualizing the smell of his hair, the special little giggle, or that little teasing twinkle in his eye.

I pray God wraps you in his arms and comforts you.
Kandi, Friendswood Texas

Super B's Mom said...

I continue to pray for guidance for your family as you make each incredibly difficult decision.

Over your family I pray for:
Strength.
Wisdom.
Comfort.
And most of all Peace.

God bless your family.

Anonymous said...

I am praying for you through this very difficult time.
Tressa

Cap'n Ron said...

Mickey,
I am so sorry..... Take care of yourself buddy.

Ron

Anonymous said...

My god watch over Cody and your family during this difficult time. I wish there were words to say or something that could be done to take away his pain. I do not know Cody or the family, although a friend of mine does and it breaks my heart to hear about what you are going through. I will be praying for Cody and the family.

Rea P

Anonymous said...

Mickey, I'm so glad that you and Dianne will be telling the other children. They need the opportunity to use the time left to express their love to Cody so they will have no regrets. Expect questions from cody soon if it has not already happened. My prayers continue to give strength and knowledge to you and your family for hard decisions in the upcoming days. My prayers for Cody is for a relief from pain and fear.

Teresa (tcoplen)

Anonymous said...

Mickey your wonderful son has fought "the beast" with such strength and courage. I hope and pray that god gives you and Diane the strength to comfort Justin & Daniella as well as each other in the days ahead. Cody couldn't have asked for more loving parents than he has in the two of you. Please know that we are all praying for comfort and pain free days for Cody.

Dan

jeriberinanabana said...

Please know that so many prayers are being said for your family. I can't even think of words to say. Our family is praying for your family, for strength, peace, and comfort.

Anonymous said...

We do not know you but we have a love for you and are praying for your family as one of our own. Many blessings to you and prayers during this time. Lee & Kendra Cendana

Anonymous said...

What "anonymous" said on March 3, 2009 7:36 AM could have come from my mind, word for word.

I am so sad, so angry (and yet, I am not you...I cannot cross that line into what you are experiencing).

I wish there was something I could do, or say; but there isn't. If I could even be of help, I would be.

I'm so sorry.

I'll keep praying.

Christy said...

Praying for you as you talk to your children. I hope they are able to spend as much time with Cody as they can these last few weeks... it will probably make Cody feel better. I am praying that laughter fills your house with Cody, that Joy is abundant, and that the Lord who is full of grace will comfort you and extend His grace to you in this suffering.
christy

Miracle said...

I have been reading this story with such sadness over this last few weeks. It is so clear to me that you are such a pillar in your family and yet you must just be cracking inside. I will pray that you have the words for the kids and for each other. I also will pray that you have a chance to talk to Cody about dying and that you have the words to comfort him and give him peace and not fear. I am praying for you all.

Lilye said...

I am praying for Cody.

Anonymous said...

I have no words to express how I feeling at the moment. But I know what I am feeling can't be compared to what you all must be going through. Prayers for you all. I hope talking with Justin and Daniela goes as well as it can.

Susan and Jonathan

Rachel Johnson said...

Dear Johnson Family, We are praying for Cody and asking the Lord to remove his pain. We are also praying for you and especially his siblings.

HUGS...
Rachel Johnson

Tyler's Mommy said...

We are praying for you and your family.

Anonymous said...

There are no words to explain the sorrow I feel for you. How I wish I could make things better. All I can do is pray for Cody, for your family. Know that as you have your conversation with Justin and Daniela there are a whole group of people here standing behind you.

May God Bless You
Greg
(mysol)

Anonymous said...

You are bearing such heavy burdens as a family. I believe Daniela and Justin probably already know about Cody and will be relieved to talk with you about it. My love and prayers to all of you today.
Cody will be glad to be home. I pray for his comfort and peace to all of you. G2G

Anonymous said...

Just wanted to let you know I am praying and have been since coming across your blog. Your story has touched me deeply.

Christine

Raymond said...

Sugar and I are here Mickey. There are no words for a time like this, only the thought that your heart isn't going through this alone. We're here for you.

Randee said...

Just know our prayers and thoughts are with you. I am so, so very sorry that you have to go through this with your precious Cody. Praying--Max's Annee Ranee

Anonymous said...

I am so sorry that you and your family are going through this right now! You will all be in my prayers. Please know that there are lots of people lifting you up in prayer right now!

Anonymous said...

It has been said over and over,we lift you and Diane, Justin, Abby and most of all Cody up to the Lord! Our hearts are breaking and we just want you to know how much we are praying for you all! Our love to each of you! May the lord bless you and give you strength.
Love to you all and hugs to Cody, Justin and Abby.
Dear Lord help them through this difficult time, give Cody, Justin and Abby your guidance that they will have peace and not be afraid.
Love to you all,
Patti, Jr. Jack and Patrick

Anonymous said...

Mickey and Diane,
I am so, so sorry. I pray for Cody to be free of pain. You are so much in my heart, my thoughts, my prayers.
Kelsey

Leslie said...

I'm praying for Cody and your family.

The Bretl Girls - Germany said...

We are praying for Cody and your family during this difficult time.

Jutta Bretl, Solingen, Germany
former Coconut Creek, FL resident

Anonymous said...

no words can express our deepest concerns for you guys. just know that we are here for you and praying that God gives you what you need. Speechless, helpless, in wv.

love,
Cheryl and John

Joshua said...

I am so sorry that your family and Cody is going through this. I will pray for comfort for all of you. It must be so difficult right now.

3L Wannabe said...

I don't have the pleasure of knowing you, or having known sweet Cody, but I share in common with you running and children just the same. Please accept my condolences - may Cody be wrapped in the arms of his Loving Father right now - even as his loving father (and family) grieve. Go with God, friend. He will see you through, and can handle your pain, sorrow, anger and tears. Run. It helps. Much love as I realize you are as I type in the midst of laying your sweet boy to rest. ((()))