Tuesday, February 17, 2009

Yesterday...

I think it was the most stressful day of my life. The accumulation of worrying about Cody, worrying about Diane and worrying about Justin and Daniela mixed with Cody's volatile reactions to everything is almost more than I can handle. It is hard but I have to keep reminding myself that this is all about what Cody is going through and not anything else. I have to stay focused.

Cody made it through about half of his examination yesterday before he said "no more." He didn't want Dr. Abu-Gosh to look at the new bump in his groin area. It was about 10 minutes before he had to go get his last radiation treatment on his chest when it was decided to give him some morphine to see if it would help. So we gave it to him right before we headed downstairs for the treatment and within 15 minutes it took effect. He was a completely different child. It is just as we suspected, all of his changes in personality are being caused by pain. So the Dr. has now prescribed morphine for Cody in hopes of making his days a little better. There is one problem with the morphine though. He seems to have emotional swings that just add to all of the stress. I would tell anyone, "you do not want to be around the Johnson household right now."

Cody will start radiation on his legs today. The doctor is going to try his best at using the conventional radiation without damaging his growth plates in his legs. We simply cannot wait for the Cyber Knife issue to be resolved. The pain in Cody's legs combined with the pain he will be feeling for the next week from the radiation to his chest is why he is acting this way. If Cyber Knife is approved then they can switch.

Tomorrow is a very big day. He will get a CT scan that will tell us how fast the beast is advancing. Dr. Abu-Gosh was pretty sure that the new lump in his lymph node is neuroblastoma and it is not a good sign. We are not going to make any plans for trips or anything else until after we see the scans. Cody's liver continues to do poorly when it comes to moving the bilirubin out of his system. In Dr. Abu-Gosh's own words, "our hands are tied as far as treatment goes unless his liver turns around." She also said that any experimental treatments are out of the question because of his liver and the risk involved.

The beast has us backed into a corner right now. Cody continues to fight but I wish I could take all of this away from him. Although they don't say it, I think the kids know that this is not going very well. They see their brother getting worse and worse. They see Diane and me losing control of the situation. I don't have any idea how we are going to explain this to Cody or Justin and Daniela. I don't have a clue how we can put it into words.

Thank all of you who have offered ideas for our trip to the beach. I will give you an answer when we have a better idea where Cody stands and his treatment. Thank all of you for your prayers and continued support. The dinners, the gifts, the cards all mean so much to us. The offers to help with Justin and Daniela have made their lives a little better and that means the world right now. Although the past 4 years have been hard we know it's going to get worse before it gets better and without your help we would all most certainly be in the nut house.

Bless you all!!!!

27 comments:

elizabethnyc said...

Prayers continue, Mickey and gang, wish there was more I could do to help...

Keeping y'all in my thoughts,
Elizabeth

Anonymous said...

Prayers and hugs continue to be sent your way on an hourly basis.

Know that the members of ACCA-NCC send tons of hugs also.

Hugs to Cody, Pat (ACCA-NCC)

Anonymous said...

We continue to send you our very best, Mickey, prayers and good wishes. Please let me know if I can do anything for you guys as I am right around the corner from you.

Kate(feetdon'tfailmenow)

Trish said...

We continue to pray for a miracle and for no pain.

Gettin Older said...

Prayers will continue. I'm like Liz and I wish that there was more that I could do to physically help.

Know that I'm here for anything you need.

Dottie O said...

Well, at least now you know that some of Cody's pain will be relieved. I'm glad they can continue with the radiation. You are all going through something right now- I wish we had the words and actions to make it easier.

Praying for peace for all and no complications with the scans tomorrow.

Anonymous said...

Continued prayers from Colorado. We're praying for wisdom for the doctors and peace for your family. You're blessed to have Cody,and he is blessed to have a family like yours. Keep the faith.

MDCN

Anonymous said...

Mickey, Hang in there my friend! Continued Prayers of strength and peace!
God Bless,
Bruce

delighted heart said...

Continuing to pray and believe Cody is healed in Jesus name. Psalm 103:1-5 Praying comfort and strength and peace and hope for all. You are one amazing dad. Keep the faith.
Bless ya'll
Patti

Anonymous said...

This is the first time I have read your blog so forgive me if you have covered this before. Something to possibly add to your arsenol. Have you looked into RFA for the liver. There is a lot of research supporting this. Mostly adults of course but that is always the battle.

Cap'n Ron said...

Lots of love headed your way from the west coast. Take strength from all of those around you and keep the faith.

Don't forget to take care of yourself buddy.

Ron

Anonymous said...

Praying for easing of the pain and no problems today. Prayers for strength and guidance.

Anything we can do to help, please let us know. We can take Justin and Abby out for a day or cook or anything. Please let us know.

Susan and Jonathan

Anonymous said...

Thanks for the update Mickey! Thinking of you and the family and hoping that you all can find some peace.

Wendy

runnergeel said...

I'll join in the crowd of those who wish they lived next door to you.
I am praying for that liver to turn around.
Always on my mind and in my prayers.
Karen

Anonymous said...

Many thoughtful prayers from New England are being sent Cody's way. I wish there was more I could immediately do for you and the family, Mickey.

DollarBill

Andy (Max's dad) said...

We're thinking of you and your family. Most of all we're thinking of Cody and praying for quick resolution, no matter the ultimate outcome, of his current pain and discomfort. Email me offline if you'd like to talk further from someone who's been through all this and would do anything to avoid it happening to another kid. Pain management is a difficult and stressful task and we made, in retrospect, some avoidable mistakes with Max in our role as advocates which caused him intense pain.

amikulak(at)yahoo(dot)com

Andy (Max's dad)

Monica Cassier said...

Continued prayers...

Anonymous said...

Dearest Mickey and family,We are praying and thinking of you all always. I dont know what I can do. I just wish I had the right words at this time. Please GOD ease their pain and give them streagth to make it through all of this. We are here for you and YOU ALL ARE ALWAYS IN OUR HEARTS........ This is really a step for me-I have never written anything on the computor. I think I need to do this more often so it dont take me as long. WE love you all and give all the kids a kiss. LOVE YOUR SIS CHRIE LEE...........

Anonymous said...

Postive thoughts for miracles and prayers for the same continue. You know you have a place at the beach anytime you want.
You are an amazing family. G2G

Cameron said...

I am praying...praying..praying. I pray for no more pain. I pray for better results and an improvement in the liver numbers. I pray for God to give all of you comfort and peace. I pray for a miracle for the little man.

Love,
Mary

Lori Mackey said...

Keeping Cody and each of you close as heart always. Praying for peace, comfort and guidance.
With much love,
Lori

Sam said...

I could offer you a wonderful vacation in the Rockies, a ski vacation... but the ocean I can't help with at all and that breaks my heart.

Continued prayers for every single one of you. You are all absolutely amazing in my book.

Love and big hugs,
Sam

Anonymous said...

Johnson Family,
Our hearts and thoughts are with you all. We are here for you...just say the word and we are there. So sorry we are so far away.
Many prayers and much love,
Kelsey, Shawn, Alysse and Elijah

Anonymous said...

Mickey, I can't even imagine how hard this is for all of you!!! Continued thoughts and prayers for Cody and the family.

Teresa (tcoplen)

trash talk said...

I am praying for God to take control and be the victor over the beast. I am also asking for strength for you and your family and wisdom for the drs. I am asking God to remove all obstacles for the cyberknife procedure. I am saying this all aloud so that it travels from my mind and to you. Amen Debbie

Anonymous said...

I found your blog thru the Riggs family blog. I will be adding your family to my prayer list.

love,
christine in cali

Kandi Harris said...

Mickey and Diane,
I continue to send out prayer requests and excerpts from your blog every day to my network group (300+ members) and to family and friends. Cody is loved by many people who have come to know him through your blog so I pray that you find comfort in knowing that the prayers are many.
Kandi Harris
Friendswood Texas