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Monthly Archives: May 2012

A little sunshine to brighten Rhea’s day

Reading a friend’s post I got to know Rhea’s story. Rhea Swearingen was born with Glycogen Storage Disease type Ia (GSD Ia), which means her liver can’t produce free glucose. It’s the most common of the glycogen storage diseases, but it’s still a rare condition, since it only affects one in every 80,000 children. The result of the lack of glucose is severe hypoglycemia, which can even be fatal. Reduced glycogen breakdown results in increased glycogen storage in liver and kidneys, causing enlargement of both.

Rhea was only diagnosed when she was 2 years old. Now she’s 17, she’ll be 18 this summer, although her body physically resembles that of someone much younger. Because of her enlarged liver her belly appears to be a bit large, and she has very fine and thin hair that doesn’t seem to grow much. But she’s a trooper, and she’s fighting the battle the best she can.

To keep her blood sugar level throughout the day and night and avoid hypoglycemia she takes cornstarch mixed with water 5 times a day (at 3am, 7am, 11am, 4pm and right before she goes to bed at night). Her diet is also very limited since her body does not metabolize sugars the same way most bodies do, she cannot have sugar, milk or fruit, nor anything made with those things.

Her and her family went through a lot over the years. As side effects of her disease Rhea developed gout due to high levels of uric acid in her blood. She also has extremely high levels of fat in her blood, both in the form of triglycerides and cholesterol. She is also in the beginning stages of osteoporosis.

Due to Rhea’s disease going for so many years without the proper treatment, she developed lesions on her liver that had a high likelihood of turning into cancer and she had to have several tests every 3 months, including an MRI to keep an eye on any growth or change in them. She entered a transplant list, first just for her liver and later for a kidney as well, and waited a long time for a suitable match.

On May 12th, Rhea’s family got a call from the hospital. There was a donor that matched Rhea. So they headed up to the Primary Children’s Medical Center in Salt Lake City, Utah. All was well and on May 14th the surgery was completed. She received both a kidney and a liver. This is exciting and at the same time very scary. Transplant is not a miracle cure, and it comes with its own risks and medications she will have to take for the rest of her life, but the quality of her life will be better. Now Rhea will finally be able to enjoy the simple things we take for granted. She will finally be able to have the chocolate cake and ice cream she so wanted and she won’t have to wake up 3am for cornstarch.

So here is what I’m proposing: take some time to write her a card. Not a get well soon, but a cheerful card. Maybe a thinking of you card. Just a card to help brighten her day. It will take you just a few minutes and it will cost you just a card (or piece of paper) and a stamp. You can even find nice cards at the dollar store, you don’t even need to spend much. Or if you feel crafty you can make your own. And if you can, spread the word. Let’s try to get her as many cards as we possibly can. Can you picture the smile on her face opening each card? I know I can.

Rhea Swearingen (inpatient)

c/o Primary Children’s Medical Center
100 Mario Capecci Drive
Salt Lake City, UT 84113

Update: Rhea loves to sing. Here are two videos of her singing: Star Spangled Banner and You Raise Me Up.

 

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You wanna mess with me? You wanna mess with ME?

Today we had this group project to work on. We had to work on a problem and suggest solutions for it. So not as fun as it sounds. And before you tell me it doesn’t even sound like it would be fun, let me clarify that if doesn’t even sound like it would be fun, what do you think that means? Exactly.

So my group is trying to come up with problems and we keep going back and forth in a couple of ideas. And by a couple I mean ten. So this chick from another group asks us what our topic is and we tell her it’s going to be soap. You know, the differences between anti-bacterial and non-anti-bacterial soap, plus how had-sanitizer is not really that helpful. And she has the guts to look at us with that “I’m so much better than you and my group’s topic is so f***ing great” look on her face. I wanted to punch her. Especially because when we asked her about her topic she didn’t even answer us.

But then we talked some more and thought soap was really not that great, and kept changing our mind every two minutes. I wasn’t even keeping track of all the topics. From time to time I would agree with something, or say I thought soap was a good topic. After a while I think they started ignoring me. Or maybe it was just my imagination. But then Ms. Nosy came back, and I couldn’t contain myself. When she asked us about our topic, I said, without even blinking, “We’re going to discuss the importance of killing puppies in order to prevent rabbits from contracting rabies.”

Her eyes seemed to pop out of her head. Like she was a cartoon. Probably because she liked my idea and thought hers was crappy compared to mine.

At least she stopped bugging us.

P.S.: We’re totally against killing puppies here, and I only said that so she would leave us alone. It worked.

 

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Drained of all energy

Got home tonight and the thought of making something to eat was just too much, so I decided to just drink something. And by something I mean a non-alcoholic beverage.

I was going to grab a coke zero, but then thought “Nah, I’m gonna drink a tea. It’s too late for coke.”

Really? Really Carol? Too late for coke?? How old are you? When did you get to the point that 9pm became too late for caffeine? You, who are so used to drinking coffee til you’re too tired that you fall asleep. You, who can drink coke all day and not postpone going to bed because of it. You, who cannot spend not even a few days without caffeine that you go crazy. Where did the time go, because apparently I missed that memo.

The thing is that I’ve being digging through my body to find what little energy I have to deal with all I have to deal. I don’t go to bed before midnight and wake up around 3 or 4 in the morning to be able to handle all the assignments from my college classes. Then I go to work and have to find patience to deal with children all day long. Then I have classes. And all this finding-energy-where-there’s-no-more is getting to me. And I finally have no more energy left.

I’m tired. No, not just tired. I’m exhausted. Yes, that’s exactly how I feel right now; exhausted. Like all energy was drained out of my body and there’s finally nothing else left. I’m depleted of all my resources or reserves. I’m done.

 

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Happy Mother’s Day!!

To my Mom (and all other Moms out there):

Thank you. Thank you for teaching me respect, confidence, and proper etiquette. Thank you for the amazing support, and encouragement. Thank you for believing in me. Thank you for letting me find our way when all you want to do is to protect me. Thank you for all your love and for all that you do.

And thank you for never ever giving up, no matter what.

I love you! Today and always!

XOXO,

Your Daughter

 

P.S.: Have you hugged your mom today?

 

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Spencer Bell Legacy (in Madison)

Today I’m in Madison, WI for another great time with friends, remembering and honoring Spencer Bell and his art at the Spencer Bell Legacy, or SBL.

Spencer Bell was a poet, a musician, an artist. In November 2006, suffering from stomach and back pains that almost incapacitated him, 20 year-old Spencer was convinced by his younger brother, Brady, (16yo at the time, who had just arrived to spend Thanksgiving with his brother) to go to the hospital. He was then diagnosed with Adrenal Cancer and passed away only 11 days later, in December 3rd, 2006. The SBL project has been happening every year ever since to keep his artistic legacy alive as well as to help raise money and awareness to Adrenal Cancer.

When I heard Tourist I just fell in love with his music. There was something about that guy, the guy in the song, that I had to know more about. I recommend to anyone to listen to this song.

Then I heard Beautiful More So and just couldn’t stop listening to him. His voice and lyrics were captivating.

Spencer kept many journals. In one of them, in September 2003, he wrote:

I’m honestly not sure where this life is going
And I just as honestly do not care
So long as I can love
And be loved
So long as I can inspire
And be inspired
So long as the sun keeps sliding through the sky,
And the rain still falls on occasion,
I’m sure that whatever supremely awaits me
Shall come
And when finality brings itself to me
I will not run and vainly avoid the inevitable
I will cast my arms out and blindly
Embrace my end
Just as I have always embraced whatever
Has come with the wind

And this is what his family wrote about him:

Every one of these words is true. Spencer did not worry about the future. He was a big fan of right now, this moment. He was inspired and is inspirational. He did love and is indeed, loved beyond measure.

And when the end came, he absolutely did not run. On the contrary, Spencer was our hero and our strength as he faced his own dire circumstances with uncommon courage and grace.

– Spencer’s Family

Today I thank Spencer, for being such an inspiration to many. For teaching us to live in the moment. For teaching us to embrace life and make every moment count, because there’s no plan B.

And I also thank Spencer’s family, for keeping his memory alive. For sharing him with us. For your kindness in sharing his legacy with strangers like me.

P.S.: You can watch the livestream of today’s SBL and be part of this great project that has inspired and continues to inspire many people. It starts at 1:45pm EST.

 

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Please don’t go — we’ll eat you up — we love you so

By now you probably already heard about Maurice Sendak. He left this world today, but his legacy remains. But he leaves us a vast collection of stories and illustrations that will continue to captivate and inspire young readers for generations.

Here’s what he said was one of the highest compliments he had received:

That little boy sure understood Sendak’s message.

Some quotes from Sendak:

“Oh, please don’t go — we’ll eat you up — we love you so!” — from Where the Wild Things Are

“Children do live in fantasy and reality; they move back and forth very easily in a way we no longer remember how to do.”

“And it is through fantasy that children achieve catharsis. It is the best means they have for taming wild things.”

There must be more to life than having everything!” — from Higglety Pigglety Pop!

“I cry a lot because I miss people. They die and I can’t stop them. They leave me and I love them more.”

RIP Maurice Sendak. Thank you for the adventures and the inspiration.

 

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Forgetting: not just for old people anymore.

A few years ago I accompanied my grandma to one of her lunches with her friends. My grandma was 76 at the time and all the other ladies were either 85 or 86. They said my grandma was the baby of the group, since she was so young. The lunch was very long, with each of them taking their time to chew their food and still manage to tell stories, but it was a great time. Mainly because of the stories, I didn’t care much about the chewing.

One of them started complaining because her son wanted to hire a maid to help her out during the day. How dare he. She was incredibly upset about that. She said she told her son that was not an option, because if she didn’t have the work around the house to do, she wouldn’t have enough things to occupy her throughout the day. Then another one started talking about how she had a maid and she’d send the girl to wipe the leaves of her plants. She’d send the girl to the porch (apparently she had a lot of foliage there) and give the girl a tiny cloth to go wipe the plants. This way the girl wouldn’t bother her and she could cook as she pleased.

That lead to the cooking topic. They all shared how much they loved to cook. Then one of them started saying she liked to knit while she waited for the food to be ready, but it was hard but she’d go sit down to knit and forget about the food. So one of them said “You should do what I do. Put a chair in front of the stove. This way you won’t forget about it.”

I just remembered all of that because I was sitting on my couch and though “Something smells good,” and after a second I thought “My food!” and ran to the kitchen to rescue my lunch.

Maybe it’s time for me to start putting a chair in front of the stove.

 

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