My leukemia's back.

[Blooie]

Sending prayers and positivity into the airwaves to you. I have been a stem cell donor and a blood recipient so I know the blessing of both! The other day I walked into the Red Cross collection bus at the Moose Lodge and thanked all the workers and donors. Pinky

Thank you. Because of people like you, Rachel and Phil are here to tease, hug and chat with. Because of people like you, if our little Ashley needs stem cell treatment, we can pray for a donor. And because of people like you, my sister may get the kidney she needs so desperately. Donors ROCK!

 

[LittleLakePhil]

Yep, seen it around here too. When did it become ok to wear sleep wear in public? I don't understand the whole pj's and slippers to shop in.

And we wonder why the rest of the world is starting to overtake us....

Might be good trouble - "just sayin'."


Ridiculous.  Is it a fashion statement or just plain laziness?

It's a case of the... "I don't cares"

LAZINESS!!! That's my vote.

Trash.... I tell you... Intitled.... Our country is over run with them

Thank you.  Because of people like you, Rachel and Phil are here to tease, hug and chat with.  Because of people like you, if our little Ashley needs stem cell treatment, we can pray for a donor. And because of people like you, my sister may get the kidney she needs so desperately.  Donors ROCK!

Don't leave yourself out Blooie.... You are a major price of the puzzle that makes this thread a special place... A place of healing and sharing.

 

[LittleLakePhil]

And Yes Donors Rock!!!!!

 

[Blooie]

Thanks, Phil. But "lip service" is easy. I didn't make it past the first interview when the search started for a kidney for my sister. Actually being the one to give a life saving donation to another person is huge and needs to be recognized every time we become aware of it. Rachel and you are living, laughing, loving proof that donors help God make miracles!

Edited: We cross posted.....I gotta learn to look at that little "new post" thingy when it pops up!

 

[badwhiskey]

Prayers sent!

 

[3goodeggs]

Quote: That sounds great. And the kids will remember that far longer and better than anything from a book.
When we do, we learn.

 

[donrae]

Well, I rounded up a pair of capri knit pants and a pink T-shirt. That worked for jammies. I'm with Sour---what are they, anyway? Honestly, I've never seen the point of spending perfectly good money on something you just wear to bed. If I'm somewhere where my...er...natural sleep attire isn't acceptable, I wear knit shorts and a T-shirt.

Blooie, I love the Team Ashley shirts! Wonder if I have time to get one made up for me....I'll probably skip it and just say I forgot or something. Wish I had a chicken themed shirt, I could say I was team chicken or something like that.

Honey's been skipping out on donating blood lately because he think's he's too busy. We got an e-mail from the Red Cross today asking for his specific type (AB) for an organ transplant patient on SoCal. Honey may not know it yet, but he's going to be donating for that person

. Donors are the best, I can't express my gratitude enough. Still waiting to hear from Sean.....

More chicks in the incubator! And they had Faverolles at the Grange this weekend. I have to go there today, if they still have them I'm sure some will find their way home

. Love the fluffy cheeks!

 

[3goodeggs]

I need this shirt.

 

[Blooie]

The bravest little boy I've ever met in my life passed away last night. Raul was special. He suffered from a disease called Epidermolysis Bullosa - the worst disease you've never heard of. We met Raul and his "mom" at the Ronald McDonald House in Denver and he's been a huge part of our lives ever since.

EB, or "The Butterfly Disease" is a condition where proteins and collagens that form the connective tissues between the layers of skin are missing. Do this. Rub skin on the back of your hand back and forth. See how it moves? In EB, that rubbing would form huge blisters. Those blisters pop (or have to be popped) and big open sores result. Some kids have it relatively mild. Some, like Raul, also have it in their internal organs and throat. Swallowing causes blisters. Hugging him when he hurts from one set of blisters causes another set where he was hugged. The medical community knows almost nothing about how to treat these kids. It's not unusual for a child to go into the hospital ER for something totally unrelated and come out days - or weeks later - after the damage and infections from something as simple as a bandaid on a blood test is finally under control. Parents have had DFS or Social Services called on them because the kids look like they have been burned. MRSA isn't something read about in newspapers - these kids live with it every day. Baths are done in bleach water. I hate this disease with every fiber of my being. Their toes and fingers fuse.

Caroline (his "Mom") first met Raul when she went over to Romania with a church group, providing aid and supplies to orphanages there. She wasn't very old - just 18. But she saw this baby, just a few months old, in an isolation crib because he couldn't be touched without it causing more wounds. He would lay there, his big brown eyes taking everything in, with all these open sores on his little face and body. She said she had to something, but she was just a teenager...what could she do?

She never forgot him. She went over every chance she got. And when she was 21 years old, when most young women are trying to find themselves and find Mr. Right, she was fighting the State Departments of 2 countries. Romania didn't allow adoption to the US anymore because of the epidemic of parents being so poverty stricken they were literally selling babies to orphanages, hoping American families would adopt them. But she got him over here on a hardship medical status, and proceeded to dedicate her life to seeing that he had the best medical care (limited at best) and learning how to care for him herself. He learned to talk, - not very well with the scarring and blisters in his little mouth, but we could understand him. He loved trucks and he went to pre-school. He thrived, he learned to laugh, and he learned to love. He got to be a little boy. He was being treated at Children's Hospital in Denver right after being admitted to the US, and that's when we met him. He was 2 years old then. What a cutie pie! I thought he had been the victim of an explosion or a burn accident, and Caroline told us about EB for the first time. It became my "cause".

Every other morning for 4 years she would get him up, adjust his feeding tube, inject his morphine and calming meds, then begin the tedious and painful process of changing his dressings. Like most kids with EB, debriding, ointments and creams and rebandaging were part of his routine. His legs, arms, hands and torso were bandaged. His hands and feet were bandaged. Bandage supplies can cost these families over $2000.00 a month, because most insurance doesn't cover what they consider "over the counter" items. The entire process takes a couple of excrutiating hours.

There is no cure for EB. There is no government funding or even any research to speak of. Since becoming involved with Debra (the organization that tries to help families as much as possible) we have lost so many Butterfly Babies it's heartbreaking. There are no treatments for EB because each type and subtype is so different from child to child. Besides, most doctors have never seen it and have no idea what to do for it. The recognized expert in EB is Dr. Toler. He's amazing. 8 months ago Raul and Caroline went to the Masonic Children's Hospital in Minneapolis, leaving everything behind back in Mass., where they had been living. And Raul became one of the few kids to have a bone marrow transplant in hopes of at least providing some relief from his EB. Oh, how he fought to live. His skin was beginning to improve but he just had too many other things going against him. After a valiant 8 months on chemo, dialysis, and toward the end, life support, he died last night in Caroline's arms.

I can't even convey how heartsick I am, and how much I'm going to miss having The Little Warrior in my life. I can't even image what Caroline is going through. Please, take a moment today and pray for Raul. For the first time in his 6 years, he isn't in more pain than most adults can handle. He's not being poked and prodded. And pray for his mom, and all of the people who loved this little guy. He was something special. EB is absolutely the worst disease you've never heard of....imagine a disease where the skin is as fragile as a butterfly's wings. Raul traded his Butterfly wings for Angel wings.

Sorry, didn't mean to totally hijack the thread and go on for so long. I wish you all could have met Raul and Caroline, though.

 

[3goodeggs]

We all need to count our blessings.
It is stories like this that put our 'rough' days into perspective.