Author Topic: Please Pray (Read 6399 times)

Esther · « **Reply #30 on:** January 10, 2009, 07:08:26 PM »

The Lidocian seems to be working as Kevin said that Braeden was sleeping most of today a natural sleep, not a drugged sleep. So they feel they are getting somewhere with the pain control. His counts are rising, slowly but surely and his blood pressure was pretty stable today. The radiation is working somewhat because the tumor at this point has stopped growing, But it has "crossed over" from the original site on the left adrenal gland and is now grown over to the right side pressing against nerves from the spine and surrounding the kidney. If he could be stabilized, there is a chance of doing the MIBG treatment in Cincinnati but it is very slim and the chance the MIBG would do the trick are very slim also.

The family is having to come to grips with some nasty things.

marla · « **Reply #31 on:** January 10, 2009, 08:24:39 PM »

Esther, I've been off line for quite sometime do to a computer virus......I'm so sorry to hear about Braeden's further setbacks. I'm so glad they have found that the Lidocian can help him with the pain. My prayers have never stopped and I will continue for him and the family. Hoping things go right this time and you can get tho Cincinnati for the new treatments.

Esther · « **Reply #32 on:** January 11, 2009, 03:12:38 PM »

Mercy, this is so up and down, it drives us nuts. As of last night, the Lidocain isn't working I guess. Haven't heard anything today though.

Sunbeam56 · « **Reply #33 on:** January 11, 2009, 03:42:43 PM »

I know its a terrible imposition - your family should and does come first. But if you can drop a note and keep us in the loop, I would be most grateful.
We have an emotional investment in this child.
I am praying the pain stops. :'(

Joyce · « **Reply #34 on:** January 11, 2009, 03:54:06 PM »

Ditto, well said Savannah.

And continued prayers and healing vibes fom the east end of LI.

emm · « **Reply #35 on:** January 11, 2009, 08:52:40 PM »

I hoping the doctor's have found a way to control Braeden's pain. I am so, so sorry he is going through this. :'( And I'm sorry for all the pain your whole family is in right now. emm

Viv · « **Reply #36 on:** January 13, 2009, 02:35:50 AM »

My office is so close to the child cancer unit. I see those little guys everyday and I always think of you and your family.

Esther · « **Reply #37 on:** January 13, 2009, 07:39:50 AM »

Thanks everyone. Viv, I bet they break your heart at first. I don't know if I could work in that area.

WE are at Kevin's again. Things are going pretty good. I'm not used to caring for a baby and household with kids but with Pete here, it helps.

Braeden is doing some better. The ANC counts which measure the immunity levels, have been coming up to where he actually has some natural ability to fight infection. He was awake enough last night to actually communicate a bit and seemed somewhat comfortable. Still a big struggle ahead I suspect. He's been in the hospital for a month again.

marla · « **Reply #38 on:** January 13, 2009, 08:14:33 AM »

Thanks for the update, poor little guy so much to go through at his age. The hospital enviroung ment gets depressing for most after a couple days, a month is so long even when not well. Rest when you can Esther...nice to here Pete is pitching in. I have 2 of my grandkids here for a few days but DH is at work......the noise level is not what I'm use to. Prayers continue.

Joyce · « **Reply #39 on:** January 13, 2009, 08:44:00 AM »

Thanks for the update Esther....

So good to hear 'improvement' news.

*signing with relief*

Vickie · « **Reply #40 on:** January 13, 2009, 12:48:14 PM »

May god be with you and your family.

Esther · « **Reply #41 on:** January 14, 2009, 11:45:14 AM »

Well on one hand, there is good news, but depending on the CT scan tomorrow, they may be going to inject something into him that will kill the nerves that are sending the pain messages. Needless to say, Kevin and Dawn hope they don't have to do that but right now the doctors just can't seem to get the pain in control so that he could come home even if he was well enough. He has an epidural and that works pretty well but he can't come home with it. So we're hoping that the CT shows the chemo and radiation has accomplished downsizing the tumor. If it has, then they'll continue on with the treatments hoping if the tumor is smaller, it'll not be pressing on those nerves.

Joyce · « **Reply #42 on:** January 14, 2009, 12:52:37 PM »

Just so you know....
no matter what 'they' tell you...

There's no such thing as false hope.

It's all about the power of positive thoughts, positive words, positive actions.

Why are the papers full of gloom?
Predicting a future of darkness and doom
There's no denying many have died
Lives have been lost, tears have been cried
And there's so much pain, and so little relief
That it's hard to feel hope in our moment of grief
But if that's what it takes to help someone live
Then we have a lot we can give
Because there's no such thing as false hope
There's no dream that isn't real
No such thing as false hope
No one can say what the future will reveal
If we believe in our hearts that it's true
Surely, our hope will pull us through
Don't listen in to the TV scare
It only weakens you with despair
They paint a portrait full of doubt
By leaving the long-term survivors out
And as a result, how many are gone
Because their hope was denied for too long?
But if that's what it takes to help someone live
Then we have a lot we can give
Hope is on the horizon
Help is on the way
Love will pull us through another day
Hope is the key that unlocks the mind
Lightens the burden or leaves it behind
And if that's what it takes to help someone live
Then we have a lot we can give!

Esther · « **Reply #43 on:** January 14, 2009, 03:31:10 PM »

I'm not sure what hope is. As I see it, I can hope until the cows come home and all it does is make me feel better. I've been told I'm not pesimistic, I'm realistic. Who knows? After seeing my grandson in agony or comotose off and on for a month, and time and time again learning that the tumor has returned and/or is growing and time and time again hearing that there is some drug or treatment to be done that might kill the pain AND IT DOESN'T and not only doesn't but causes some other problem, I am not thinking about hope for me. I pray for patience, strength, and that Kevin and Dawn will be on the same page in the decisions they make. I pray for the medical team to have wisdom when searching for whatever is needed for Braeden. And I pray that Braeden can rest comfortably. As his daddy said, "Either way, if Braeden dies or not, he'll be healed."

Sunbeam56 · « **Reply #44 on:** January 14, 2009, 05:03:18 PM »

Ah, if it were only that simple. Not only Braeden needs healing... Kevin and Dawn will need our prayers just as much after a funeral, if it comes to that, as before.

The focus on Jett Travolta has been good. The loss of a child is not a trivial insult to a family, and the combined souls of a family.

I pray for mercy for you all.

Esther · « **Reply #45 on:** January 15, 2009, 08:12:52 PM »

You're right Suzanne. That is exactly where we're at right now. The results of the CT scan came in about 4. How to say---------the CT scan showed there is no chance for Braeden to recover, unless God does a miracle. So they will procede with the treatment that will deaden nerves to try to at least relieve him of pain. He will remain in the hospital of course. He also has an epidural but I don't think it will be necessary if the nerve deadening thing works. Kevin said tonight he was talking sense whereas yesterday he was experiencing hallucinations from the narcotics or withdrawal from them. He asked Braeden if he wanted anything from home and he wanted some monster trucks.

We talked about an hour and a half again tonight, discussing the funeral and other stuff. He's very concerned about his children and he and Dawn seeking counseling. He doesn't want the kids to grow up resenting them or Braeden because of this horrid year and a half. He was talking about even speaking at the funeral. He wants people to know this child isn't dead, he's been healed and walking with Jesus.

You guys are the first I have told and I don't remember crying like this when my baby died, when my mom died, or when my dad was hurt. Somehow this little guy and his parents have touched so many people.

One doctor said it won't be long but we have no idea what that meant.

They aren't telling the kids until tomorrow night or Saturday. There is a Christian Child Life Counselor at the hospital that they have an appointment with tomorrow and hopefully she will give them guidance on what to say or not to say when telling the kids.

Kittyzee · « **Reply #46 on:** January 15, 2009, 08:20:23 PM »

:'( :'( I am so deeply sorry for you, for darling Braedon and all of his family. His life was not lived in vain, he has touched and will continue to touch lives forever.

marla · « **Reply #47 on:** January 15, 2009, 08:34:19 PM »

Esther, I'm so sorry the tears were streaming down my cheeks as I read this :'(. He has put up a very vallent fight with this horrid disease. And he will live and walk with Jesus. It sounds as if even through this tradedy Kevin and Dawn are trying to think clearly and the small steps they are taking right now seem to be the right ones. I pray for Braedens release from pain and for strength and guidence for Kevin and Dawn and the family. Many prayers for you also dear Esther, you have been a pillar of unwavering strength for your family, may the prayers you recieve from your friends here and elsewhere help ease your grieving heart.

emm · « **Reply #48 on:** January 15, 2009, 08:51:32 PM »

Oh Esther, such sad news. I hope that these next few days can move along gently for all of you. Poor little Braeden. You and your family sound so strong. Your strength and your faith will help you through whatever is coming next. Of course I've never met you or Braeden but I have come to know something of your spirit and his too and I admire you both. I have come to really care about this little fellow and I weep too.
emm

Krista · « **Reply #49 on:** January 15, 2009, 09:05:26 PM »

omg I am so sorry!!!!!!! I still will hold out hope and a miracle.

Joyce · « **Reply #50 on:** January 15, 2009, 09:34:15 PM »

I will always pray for the miracle!

Esther, my thoughts will be with you.
You have touched so many people too.
We're all here for you because of that.

Indiana Karen · « **Reply #51 on:** January 16, 2009, 07:21:33 AM »

Oh Esther, I am so, so sorry.
But, I am also relieved that they can finally do something to stop his pain. I can't imagine watching your own child go through so much pain.
I will be thinking of you and your family.

Karen

Esther · « **Reply #52 on:** January 16, 2009, 07:57:42 AM »

You guys don't know how much a help it has been to me to have you all to talk to at the drop of a hat, knowing you were there praying and giving support and comfort. I don't have to worry if I'm waking somebody up with a phone call and I don't even have to leave the house to talk to you so that means I don't have to change my clothes or comb my hair. Even if it's the middle of the night I know somebody is out there ready to read and give words of wisdom.

miguynmkoi · « **Reply #53 on:** January 16, 2009, 08:56:57 AM »

Braedon is in the best hands whether he is in our presence or God's. Your family is so strong and brave to stand by this little guy and give him so much love and still have enough to share with those all around. I'm sorry Braedon is still suffering the pain and discomfort. I also will keep my prayers and hope for a miracle.

The AP family is much comfort and a good distraction from the "crazies" of real life. Hugs and kisses to you, your family, and especially to little Braedon. Lots of Love being zoomed to you with these words.

Esther · « **Reply #54 on:** January 16, 2009, 11:15:31 AM »

Right now Kevin has just picked up Eliana 7 and Ian 14 from their schools and taking them to the hospital. They'll play with Braeden a while and then Kevin will take Ian to a separate room to tell him. Then they all will take Eliana along with a Child Life Specialist and go to a room where they'll do the same thing but on her level. The goal is to get them to ask questions, kick the wall, scream or cry, or just got in a corner and be alone, if that is what they want to do. I'm staying the weekend and next week too because next week is conferences at school and half days all week. We'll see what happens as time goes along.

One of our duplexes has been emptied and will need extensive cleaning and some painting. There's not much major repair needed but it is an older building and the tile in the kitchen has a bunch of cracks so we'll probably replace that. The bathroom floor I think is rotting so I suspect Pete will tear it out and replace it with cement board and then ceramic tile it too. The people have caulked around the base of the tub surround with brown caulk. Of course the tub and surround are white. GRRRR. Then they caulked at the base of the tub. WHAT A MESS of gook. It's hard to believe that people can live like they do. At least these folks haven't snuck in animals and left a mess of feces and fleas like the last one. We already have had two calls asking when it will be ready. We haven't put up a sign or advertised.

tweetybaby2005 · « **Reply #55 on:** January 16, 2009, 12:11:29 PM »

:'( :'( Esther, my heart breaks into pieces and tears just can't stop flowing when I saw your update. No matter what happens, I'll continue to pray for you and your family. If God wants him to join and walk with him so he doesn't suffer any longer, than that is the way to be. Braeden will forever be in our hearts.

Kuan

barb · « **Reply #56 on:** January 16, 2009, 12:33:27 PM »

This breaks my heart, I am so, so sorry, Esther. I have been praying and praying for Braeden from the beginning, and holding out hope. I will continue to pray for him, and your whole family, and everyone who has been so deeply affected by that brave little boy's fight.

Julles · « **Reply #57 on:** January 16, 2009, 03:58:13 PM »

Esther, although I no longer work in the field, I am a liscensed funeral director. Some of the most meaningful and healing funerals we had were when the family participated in some way. We called them "Life Appreciation" services, because they're about remembering the person in a positive way.

So if Kevin is up for it, I encourage him to speak. There are lots of other things that make a service unique -

Music - instead of the same old stuffy hymns, how about some of the music Braeden likes?

Photos - collage of pics of Braeden, his family, pets, toys, trips, etc., near the book where people sign in, or near the casket, or both.

Movie - yes, you can show home movies or videos in the funeral home or church.

Items - you can exhibit a special toy(s) of his, drawings he made, books he liked, etc. You can also put things in the casket with him, like a teddy bear.

Eulogy - people speaking about memories of the child, etc. Best if the speakers practice this out loud a few times. It's mighty hard standing in front of a crowd to speak when your heart is breaking.

I'm so sorry this is happening. I wish you and your family strength.

Roark · « **Reply #58 on:** January 16, 2009, 06:46:42 PM »

In my mind, this child is, and will always be, a Warrior.
You can't walk the path he has, and not gather a lot of respect from those watching.
One day I hope to meet him.
Until then, I wish his family peace and strength.
For his parents, wisdom and comfort.
And for his pain, rest.

As for me, I'll hold onto my hope for a miracle.

Roark

Sunbeam56 · « **Reply #59 on:** January 16, 2009, 09:11:50 PM »

Is the family recommending memorial donations to some group?

I'm so sad... but still praying for mercy for all. :'(