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nosurrender

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Reply with quote  #1 
We are waiting with you, Carrie....

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csp

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Reply with quote  #2 
 Gina,
 Thank you dear one. Today I am going to go to Cincinnati to see Caden .

Today we may find out which surgery he will be having. The doctors are pretty certain after the surgery and finding more than one area on the left side that has harden combined with the results of the electrodes that are now on his brain that it is Rasmussen's Syndrome. I do hope that they are wrong. They must be absolutely certain though so they are waiting for the path report.
Rassmussen's is a devastating disease and the only thing that will stop the progression is a hemispherectomy.

Caden was born with no problems and up to a year ago when the first seizures started was a normal happy little guy. As time went on the seizures began to happen more frequent, got stonger and lasted longer. some up to 5 minutes. The kids were taking him to Childrens in Dayton, they became upset when they felt no one was listening to them about Caden.  He was losing his ability to talk and his balance was being affected.  They just kept adding more medication which was not helping and led them to Childrens in Cincinnati for more opinions. Childrens in Cincinnati admitted Caden, he was hospitialized for 3 weeks. They ran so many test I have lost count of them all.
Then came the bad news that they suspected either Cortical Dysplasia or Rasmussen's.

They released Caden from the hospital to come spend time with his family while he waited for his surgery date of December 6th, but his seizures were relentless having up to 20 in a 24 hr period so after only a couple of weeks  home with us his surgery was moved up and Caden is back in the hospital.

Caden turned 5 yesterday at Childrens hospital in ICU.

 There is a silver linning in all this I have been reading about Rassmussens and children that have had a hemispherectomy at the Hemi foundation site. Children are so resillant, their little brains grow new path ways and relearn again with intensive therapy.The best news of it all is that it will stop the progression of the syndrome which is profound mental retardation, and uncontrollable seizures.

Caden has been my strength through the cancer. Every time I feel sorry for myself and want to just stay in my bed and hide, I think of him and how he still smiles, giggles and plays.
He is my hero.

Please continue to keep Caden in your prayers and thoughts it means so much to us.



Love,
Carrie





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Calico

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Reply with quote  #3 
Carrie,
I can't imagine.....

Hugs and prayers are coming your way!!!

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Cynt

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Reply with quote  #4 
Oh my word. That poor, brave little boy! And the stress on his family, I can only imagine. He'll be in my prayers!

There are so many horrible diseases out there...each time I think I've heard the worst, I hear another one that's just as bad or worse. This is definitely devastating!

I know what you mean about thinking of Caden helps you to stop feeling sorry for  yourself. There's always someone worse off, isn't there? When I had my mastectomy/reconstruction, I had a private room until my last full day. At that point, another lady moved in. Tho the curtain was pulled, I could hear everything that was said. From what was said, I gathered that she'd been hospitalized for chest pains. She was diabetic (and now blind from that), had high blood pressure, arterial and coronary disease, and it was mentioned by her husband that they had been told that her conditions might start to affect her mind. It was apparent that that had already happened; she badgered the nurses with a childlike persistence, trying to get her lunch. With her lunch, she wanted a hot chocolate, and it seemed for a while that no amount of explaining her medical conditions could help her understand why she couldn't have lunch, and certainly couldn't have hot chocolate. I also caught that her 16  year old son was missing. She knew this because his parole officer had been by, and no one knew where he was. Later, she got her lunch. She immediately said a heartfelt prayer of thanks for her blessings.

Talk about a sobering perspective. I thought of my children...whom I could see! I thought of my 16 year old, who, although she could certainly give me problems, had never gotten into trouble and certainly wasn't being sought by her parole officer! I thought of the lunch I had just eaten, with no dietary restrictions. And I thought of my overall health, which was certainly better than hers. And yet, her obvious gratitude over the simplest of blessings was so striking and humbling. I thought, what have I to complain about? Even if I died tomorrow, I still would have had a life of riches and blessings, beyond what many in this world could even imagine, much less hope to live.

I bet Caden is inspiring everyone who meets him. I know he's inspired me! And isn't that a wonderful legacy to have, no matter what happens next? 

I hope and pray he'll have the best outcome possible.

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MicheleS

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Reply with quote  #5 

{{{prayers}}} for Carrie and Caden.

csp

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Reply with quote  #6 
Just wanted to update you on Caden.
The path report shows that Caden has Cortical Displasia.
The problem is that it is not localized, there are more than one place.
So Cadens team had a meeting this morning and they are going to do what is called a functional hemispherectomy. They will be removing the front part of the left side of his brain instead of the entire left side since that is where the majority of the seizures come from, or as team calls Hot Spots.

I went to see my little grandson yesterday and it was hard to see him like this. His little face is swollen and his left eye is completely swollen shut. He will not eat so they had to put in a feeding tube in which he pulled right back out , so they had to restrain him and put in another one. He was mad as a wet hen. He is running a fever so they did cultures and nothing is showing up yet. He is hyper sensitve to touch, so no cuddles or kisses but that is okay I wouldn't want messed with either. They changed his pain meds today to morphine so he has been resting well today I am so glad because yesterday he cried and it was heart breaking.

Caden will be having surgery around 7:30am Friday. DH is going to the hospital and I will have to stay home. The surgery will take 7 hours so a long day ahead.

Please continue to keep Caden in your prayers and thank you so much.

Love,
Carrie

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DoreenF

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Reply with quote  #7 
Carrie - it breaks my heart to imagine what poor little Caden is going through... Caden and your family continue to be in my thoughts and prayers ...   hoping for a successful surgery tomorrow, and end to the seizures  and a quick recovery ...  I can only imagine how scared and anxious/nervous everyone in your family is ...   praying since it's the only thing I feel I can do to help. 

Love ya,
Doreen


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CherylG

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Reply with quote  #8 

(((((((CARRIE))))))) I cannot imagine what you and your family are going through. That poor little dear. Keeping him in my prayers. God always takes care of little children ... I'm sure he will take care of Caden.


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delphinus

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Reply with quote  #9 
Sending pure love to (((((Caden)))))
and to your whole family,   (((((Carrie)))))

May everyone come through this difficult time healthy and strong and happy.

xoxox
love love love love love
janet
CherylG

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Reply with quote  #10 
Sending a guardian angel to watch over Caden today. Holding you all up in prayers today.
Cheryl

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Calico

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Reply with quote  #11 
Sweet little Cayden,
thinking about you and praying hard for a successsful surgery, hoping that anesthesia will bring you dreams that make you giggle a hole in your belly, run with the wind and your siblings and chase around the house with glee.

Carry,
how is the family holding up.
It is not easy to be at home for you, I bet!
Years ago I was reading about a case where medicinal (high dose) Omega 3 fish oil helped with the nerve damage of MS (I know, totally different disease). I wonder if Constantine might have some thoughts on CAM (which would be probably hard to implement with a little one).....just reaching for straws....

Love to you and your family.


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nosurrender

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Reply with quote  #12 
Carrie, continued prayers for the baby... and hope you are holding up ok too.
Are you feeling better? How is your burn?
Sending you lots of love,
g


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seychelles

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Reply with quote  #13 
Good Early Morning Carrie and Caden,



With love and hope that today is the dawn of better days ahead,
seychelles
csp

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Reply with quote  #14 
Good morning to my sweet sisters,
Caden's surgery went very well. And like the first morning dearest  Seychelles it is his first morning to be without those horrible relentless seizures. A perfect song for this happy time. My DH said when he left late last night Caden looked like he had been in a fist fight, but was sleeping and the nurse said she would keep him out of pain all night. Caden is temporally paralized on his right side and has lost his fine motor skills but with lots of therapy he will regain some of what he has lost.
He reconized his daddy's voice so a very good sign!

 Now comes healing and regaining. Not so different than what all of you have done or doing, healing and regaining.. finding the new you.

Love,
Carrie

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courage does not always roar. sometimes courage is the quiet voice at the end of the day
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CherylG

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Reply with quote  #15 
((((Caden))) so glad to see that Caden came through this so well. What a relief it must be to see those horrid seizures gone. He has a lot of hard work ahead of him but if he is anything like grandma Carrie he will  do it!
Hugs and prayers for Caden and to you and all your family.
Cheryl

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Limner

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Reply with quote  #16 

Relief, indeed.  It is so hard to watch a child suffer.  They are so fragile - yet so very strong.   He is adorable!  Looking past the appearances to the strong little person inside helps me.   "but with lots of therapy he will regain some of what he has lost.  He recognized his daddy's voice so a very good sign!"  Such a great attitude - and he will see himself the way the people around him are seeing him.  Remember The Secret Garden?  Love to you and your family, and you are in my thoughts nd prayers.  It does mean a lot to know people are holding you up all over the place   - Mary


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Cynt

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Reply with quote  #17 
My nephew just had brain surgery to take out a potentially fatal arterial formation, he was under anesthesia for two days, 8 hours of surgery one day, and 9 the next. It was no brain resection, but they did have to take some brain matter to get the malformation taken care of. It was expected that he would lose some function, but this is normal, they said. It was also expected that he would quickly regain or relearn the functions he lost. This was the top pediatric neurosurgery hospital in the country, and he was 12. And he did! He had one minor stroke, but spent next to no time in the rehab hospital. 

Again, it was no brain resection, they took out very little, but he was also 12, which is much less of an advantage in brain restructuring than a five year old has. My nephew is doing very well, and sounds like Caden is, too! The brain of a child is an amazing thing, and the younger the brain, the more resilient it is. Prayers are going out for him, but it does sound like things are going the way they should. Awesome!

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csp

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Reply with quote  #18 

Yesterday Caden had 0 seizures! He also drank water from a cup and took his meds orally. He passed his swallow test. Although he is not suppose to have feeling on his right side when the nurse came in to check his IV and put meds in it he said owww and this morning he said no. It made us cry happy tears.

Our family has been introduced to a whole new world that I never shamefuly thought alot about before. Children and adults with brain injury and diesease. The brain is such a complicated organ that even the doctors that are the experts don't fully understand. Caden said ouch even after the seizures had left him with no speach from a epileptic stroke. Once the dieseased area was removed,the healthy side remembered and is taking over. The doctors say Isn't that wonderful, and no we don't know how.

Today I am going to go see Caden.  I think it will be wonderful to see Caden have 0 seizures!
 Your prayers and thoughts mean so very much to us. It holds us up, and feels like Caden is covered in a soft warm blanket of protection and caring by  you all.

Love,
Carrie

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courage does not always roar. sometimes courage is the quiet voice at the end of the day
saying.. i will try again tomorrow.
~maryanne radmacher
Calico

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Reply with quote  #19 
awwww....Carrie, fantastic news!!!
It is truly amazing to hear such a report.
Keeping you all in my prayers, heading up the mountain shortly before the sun sets!!!

Hugs to all!! 

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CherylG

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Reply with quote  #20 

Such wonderful news Carrie ... still praying and will light another candle at mass tonight.


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When you get to the end of your rope, tie a knot and hang on...Franklin D. Roosevelt
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