Author Topic: Maybe another Silent Night  (Read 1629 times)

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Offline Esther

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Maybe another Silent Night
« on: December 24, 2008, 09:12:34 PM »
These last weeks I haven't said much about Braeden because it just seemed so bleak. He was throwing up every day. Doctors said it was something to do with the blood not getting to his digestive area and after the food layed there a while it just came back up. Eventually they put in a "nose hose" and ran it past the stomach to get nutrition in him. He has been experiencing so much pain off and on for a couple of weeks but sometimes it seems to be in his legs and sometimes in his stomach. With a little kid it is hard to tell. Anyway, they wondered if the tumor was pressing on his spine. Eventually they gave him a morphine pump and it was doing a constant infusion. Also the tumor was pinching off the urethra (exit to his kidney) so they have put in a tube to drain the kidney and he has a pee pee bag now. Then they put in a tube on the other side to do dialysis so including the chest port, he has 4 tubes. He has had a couple difficult days and nights. This afternoon when Kevin called to see if Ian and Eliana could spend the night again, I could hear Braeden screaming in the background, "OW, OW." He was in the Pediatric Intensive Care Unit at the time.

Here's the latest Care Pages update from Dawn.
So we may have finally figured things out! Braeden had a CT today. The good news is, the problem tumor is responding to chemo and has shrunk. We are thrilled about that. We were also looking to see if we could get an idea about what was causing him so much pain and thankfully, I think we found it. The CT showed a lot of fluid in his chest cavity that was causing a lot of pressure and starting to collapse his lungs. This is likely why he was needing oxygen today. This evening they put in chest tubes to drain the fluid and blood and we are now in the PICU for at least the night. He's had blood and platelets (his hemoglobin hit an all time low in just hours today) and is resting comfortably for the first time in days. Hopefully it will be a silent night for all tonight. Praying you all have a wonderful, merry Christmas with your families rejoicing in our Savior!

"For unto us a child is born, unto us a son is given: and the government shall be upon his shoulder: and his name shall be called Wonderful, Counsellor, The mighty God, The everlasting Father, The Prince of Peace."
Isaiah 9:6

Wishing you all HIS peace this Christmas, and always.

Offline emm

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Re: Maybe another Silent Night
« Reply #1 on: December 24, 2008, 09:21:29 PM »
 :'(   :hug:   emm

Offline Julles

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Re: Maybe another Silent Night
« Reply #2 on: December 25, 2008, 12:07:17 PM »
Prayers, Esther.

Offline lorraine1960

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Re: Maybe another Silent Night
« Reply #3 on: December 25, 2008, 12:38:06 PM »
Esther i really don't know what to say !!  :(  lorraine
lorraine

Offline Esther

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Re: Maybe another Silent Night
« Reply #4 on: December 25, 2008, 05:33:43 PM »
I know Lorriane. I'm in the same boat with my son and his wife. Nothing I can say seems to help anyway. So we talk about it from the gut, you know, feelings, fears, etc. We've said exactly what all of you have thought, no doubt. How much more does this little guy have to go through? The answer is that they haven't given up yet on his chances to be cured. But are aware they may have to make a decision to stop treatment at some point. So if you are praying, you can add that to your requests. I hope that if it comes to that point that they both will reach the decision together, along with the doctors and that they have peace with their decision.

The hopeful Care Page update that Dawn wrote last night didn't turn out to be a Silent night. He was still in a lot of pain and the fluid removed from his chest was just that, body fluids not blood. Noone seems to know why it was there. They finally determined the morphine isn't doing anything positive for him so stopped that and are "trying" something else. He is being given steroids as they wonder if he has inflammation somewhere. Maybe, maybe, if, if, if.

Tonight Kevin said a young guy came in that didn't look like a doctor at all. Then Kevin laughed and said, "I don't know why I said that. What's a doctor supposed to look like?" Anyway this guy talked real down to earth and explained stuff to answer their questions and Kevin began to cry. The guy reached over and put his hand on his shoulder and said, "I'm so sorry, buddy." This guy is a personal type and Kevin found it helpful to have talked with him. The regular oncologist is so intellectual and so far above us regulars in life, that even though they are convinced he is the best doctor for Braeden, they don't understand him half the time.

Kevin had left the three kids here and gone back to the hospital so he could have some time with Dawn and she would be able to get a shower. She won't leave Braeden alone. He throws a fit I guess if he thinks she is leaving. I guess I can understand that. Anyway, he came to take them home and said they'll probably be spending several days with us next week seeing school is out.
« Last Edit: December 25, 2008, 05:35:00 PM by Esther »

Offline reddad35

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Re: Maybe another Silent Night
« Reply #5 on: December 25, 2008, 09:10:15 PM »
Quote from: Esther link=topic=7710.msg80225#msg80225 date=1230181954.
[i
So we may have finally figured things out! Braeden had a CT today. The good news is, the problem tumor is responding to chemo and has shrunk. We are thrilled about that. We were also looking to see if we could get an idea about what was causing him so much pain and thankfully, I think we found it. The CT showed a lot of fluid in his chest cavity that was causing a lot of pressure and starting to collapse his lungs. This is likely why he was needing oxygen today. This evening they put in chest tubes to drain the fluid and blood and we are now in the PICU for at least the night. He's had blood and platelets (his hemoglobin hit an all time low in just hours today) and is resting comfortably for the first time in days. Hopefully it will be a silent night for all tonight. Praying you all have a wonderful, merry Christmas with your families rejoicing in our Savior!

"For unto us a child is born, unto us a son is given: and the government shall be upon his shoulder: and his name shall be called Wonderful, Counsellor, The mighty God, The everlasting Father, The Prince of Peace."
Isaiah 9:6

Wishing you all HIS peace this Christmas, and always.
[/i]

Thank God, for everyone on here thank anything you believe in. I pray for Braeden. If you do not pray please take a moment to at least think deeply about this young fella. Esther I have this little guy  in my thoughts....I just prayed again. Give him a hug for me. He will know where it came from. Love Jim

Offline karen J

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Re: Maybe another Silent Night
« Reply #6 on: December 25, 2008, 09:39:23 PM »
Esther, I really don't like bringing up such a controversial subject, but it makes me soooo mad that none of Braeden's  doctors have brought it up. They don't have time to read the scientific research.  Cancer cells can not get nourishment from anything but glucose (Otto Warburg proved that, and won the Nobel Prize eighty years ago, when it was actually worth something).
Even hormonal-fed cancers rely on sugar, because insulin is a precursor molecule of estrogen, progesterone, etc.

Are they feeding him ANY waffles, pancakes, bagels, bread, jelly, syrup, pasta, Popsicles, "whole grains", sugar, cookies, watermelon, (fruits), fructose (anything with "ose" at the end), English muffins, candy, chocolate, ketchup, BBQ sauce, potatoes, French fries, Breakfast cereal, oatmeal... any of that?

I know it's common for cancer patients undergoing therapy to not want anything to eat (often advised to eat anything that will go down), but the addiction to processed refined, causative carbohydrates overwhelms and is more addictive than heroin. The nurse attending to my dying brother and father said "So what? They're going to die anyway- let them have the Ice Cream".  I've sat by more family members than imaginable, watching them die, yet feeding them pancakes, Ice cream, and bagels, Never crossed my mind that it was the processed, easily digestible carbohydrates that were killing them. Or the highly refined processed vegetable oils that nutritionists say are the best oils to eat (Wrong).

I understand that neuroblastoma is a very bad cancer. But Sugar causes (and feeds) cancer. Don't feed it. Sugar is EVERYWHERE.



Karen
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Offline Joyce

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Re: Maybe another Silent Night
« Reply #7 on: December 26, 2008, 05:07:49 AM »
Karen is right.  :clap:

And thank you Karen for saying what I wanted to say, what I have been getting so tired of repeating over and over.
SO many people can change their lives, IMPROVE their lives, extend their lives if they would just listen and heed what you said.

This is true...it is FACTUAL.

Esther, I am praying for you, for Braeden, for all involved.
I agree, from the getgo, B's oncologist has been VERY insensitive,
especially if you all feel like you don't understand him.

Knowledge is power.
Ask questions, get online and Google every word you hear, every drug they are giving Braeden.
Get in the Oncs face, keep him on his toes.

From my experience, *most* oncologist do not think outside the box AT ALL.
And this is just the root of all evil, don't get me started on the kickbacks they get from big pharmaceuticals.
Kickbacks they get by 'going by the book'. Cancer is a huge money making market. Especially Chemotherapy.
If I had stuck with my first oncologist, I would be dead, or dying horribly right now  :o
because my first onc did not catch all the cancer during the first surgery, and refused to listen to my worries and complaints about the pain,
and that I thought that the residual lump was still cancer. He just poo-poo-ed me and treated me like a hyprochondriac....said it was a little hematoma, and a bit of normal scar tissue.
For over a year I this went on, even when it started getting painful all the time, and getting bigger.
When I thought I was going nuts, I finally met with and was advised by the head of the local Breast Health Coalition to see another Onc.
She put me through all the tests that my first onc. should have done to determine what this lump was, but didn't.
She took out the year old chicken egg sized hardened hematoma (result of an internal bleed 2 weeks after 1st surgery)
and biopsied it.
Was not just a hematoma, there was residual cancer in it too. The biopsy said it was residual because it was effected by chemo and radiation.
That is when they decided to remove both of my breasts, and a complete hysterectomy since that cancer had a whole year to 'play'.
And yes, they found more cancer in the tissue they removed.

IF I had another onc, I would not have had to go through what I did, or lose all my female parts, or have to go through radiation therapy.

So, the moral of the story is the MD is not short for M-'Diety'. They are not flawless. That can be wrong. They can be rude. They can be dangerous.
They can kill you. There are alternatives to every treatment, alternative to every MD.

There are people you CAN talk to to get explanation, advice, alternatives.

I saved my own life by listening to my gut, and talking to someone outside the treatment of my first oncologist.

First, start with the diet...because sugar and starches are THE BEST fuel for cancer. :o
Peace to all  ... Joyce



Breast Cancer Survivor

“Study nature, love nature, stay close to nature.
It will never fail you.”
Frank Lloyd Wright

Offline Esther

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Re: Maybe another Silent Night
« Reply #8 on: December 26, 2008, 12:39:17 PM »
I have no idea what he is eating as I am not around him much. We were there the other day when they brought up his lunch tray and it had a hamburger, cooked carrots, applesauce and juice on it. He ate one spoon of applesauce and that was it. Pete ate the hamburger eventually.

It is odd that the oncology community is not the first ones to hear about the negative connection of cancer and sugar. Are there published studies in the medical field about these findings? It doesn't compute (for me) that if something is a proven cure that they wouldn't be anxious to add it to their suitcase of knowledge. If I were a doctor in that field and heard of something that could stop this horrible illness, I would want to add it to my way of treatment so I would be the "good guy" instead of the opposite.

Do you think that it is like the kind of argument between homeopathic (alternative) medicine and MDs? Or chiropractic and MDs? Each branch wants to be right and won't listen to the other maybe?

Offline tracey_shafer

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Re: Maybe another Silent Night
« Reply #9 on: December 27, 2008, 03:06:04 PM »
Esther you and he are always in my prayers and I feel so helpless as I am sure you do too. We can only wait and pray (and pray and pray!). Poor Baby, no child should have to go through this or parent.

Offline Sandye

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Re: Maybe another Silent Night
« Reply #10 on: December 27, 2008, 08:38:27 PM »
Esther, Braeden has my prayers, as do you and the rest of his family.  I agree, no child should have to go through this, but I have little to offer except prayers for him.  :'(

 

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