Saturday, January 14, 2012

After months in hospital, Utah girl gets Christmas wish

BY JULIA LYON

Here’s what Megan Birk doesn’t have anymore:

The heart she was born with; the new model is nicknamed Thumper. Most of her colon. Her spleen, her appendix, part of her stomach and her pancreas.

Megan dreams of Red Lobster — shrimp scampi, snow crab, cheese biscuits — because she hasn’t regularly eaten solid food since spring. When her mom, Paula Birk, recently brought Greek takeout into Primary Children’s Medical Center, its spicy scent wafting toward her wistful daughter, Paula realized she should leave the room. Sometimes Megan asks to smell her food.

The teenager has spent years of her life in hospitals, defying doctors’ expectations after her premature birth, then a bout with leukemia, and again after cancer treatment damaged her heart. Last spring, she was leaping and turning in a dance performance at Tuacahn High School for the Performing Arts near St. George.

Days later she was strapped to a gurney, being flown to Primary Children’s as new tumors bulged from her side.

Once again, she wasn’t just sick, but deadly sick.

"I knew what would happen," said Megan, 18. "I thought I’d have to go through all that cancer stuff again. I got really scared."

For most of her senior year, Megan has been at Primary Children’s with her mother sleeping next to her almost every night. When her favorite teacher, her choir director, takes attendance at Tuacahn, he always asks whether Megan’s back. Not yet.As the sopranos warmed up in class in December, Megan lay in the dark in Salt Lake City, with Christmas lights draped over the bags of fluids on a pole helping to keep her alive.

"If she was going to die, she would have been dead this time," Paula said. "She wants to do her homework."More than 150 children will be at Primary Children’s this Christmas, where Santa will visit them as they sleep surrounded by blinking monitors and intravenous tubes. As the holidays approached, Paula hoped Megan would not be one of them.

This is, after all, a girl who was born 10 weeks early weighing about 1.5 pounds, the smaller of identical twins. Baby Megan caught pneumonia when she was about four days old and doctors told her mom she would never go home. Three years later, leukemia assaulted her and doctors once again predicted she might not survive. The treatment hurt her heart, leading to a transplant when Megan was 15.

For teenagers like Megan who receive a heart transplant, over half are alive 12 to 15 years afterwards. She was among the survivors, dancing at her new school, swimming in the pool and getting ice cream with her family. Her future was filled with possibilities.

And then one day last spring, Megan felt so nauseous at school she couldn’t eat lunch. When she couldn’t keep down food, water or even her heart medication, her brother, Lamar, took her to the emergency room in St. George. Doctors saw a large mass in her abdomen and rushed her to Primary Children’s.

A biopsy identified a Desmoid tumor. Although considered benign, it invades, spreading like octopus arms into tissue. One of the edges of Megan’s tumor was next to vessels that feed most of the intestines and stomach. After surgery, tumor cells likely remain — but they are too close to the major vessels for surgeons to remove them.The cause of the tumor, which can recur, remains unknown.

"I always tell Megan and Paula too, ‘You won the bad lottery,’ " said Holly Spraker, Megan’s oncologist. "It’s not fair to even get one thing, but she’s had multiple cancers now and multiple problems."

The tumor invaded part of her pancreas, some of which had to be removed. Because the pancreas didn’t heal properly, the teen had problems eating solid food over the summer. She was initially in the hospital for about three months.

The suffering can still take Megan by surprise. Chemotherapy exhausted her and made her throw up. She cried because she got so scared.

"I gave up once," Megan remembered, when she was waiting for her heart. She gave up again when she first heard about the tumor.

"But then I say to myself I can’t give up because if I do — it won’t work," she said. "Nothing will help."The cause of the tumor, which can recur, remains unknown.

"I always tell Megan and Paula too, ‘You won the bad lottery,’ " said Holly Spraker, Megan’s oncologist. "It’s not fair to even get one thing, but she’s had multiple cancers now and multiple problems."

The tumor invaded part of her pancreas, some of which had to be removed. Because the pancreas didn’t heal properly, the teen had problems eating solid food over the summer. She was initially in the hospital for about three months.

The suffering can still take Megan by surprise. Chemotherapy exhausted her and made her throw up. She cried because she got so scared.

"I gave up once," Megan remembered, when she was waiting for her heart. She gave up again when she first heard about the tumor.

"But then I say to myself I can’t give up because if I do — it won’t work," she said. "Nothing will help."As for her own future, "I either want to be a heart doctor or a cancer doctor for little babies," Megan said from her St. George home, acknowledging her repeated illnesses may make performing surgery difficult."If I can keep my hand steady, then I can probably do it, but it will take a lot of work," she said.

Megan’s identical twin, Jackie, is healthy but figures her sister is a lot stronger than she is.

"I always tell my mom, ‘Why can’t I take something? Why can’t I take her illness and not have her suffer for such a long time?’ "

In November, Megan was back in the hospital for doctors to cut out a cyst that had grown on her pancreas. They also removed a connection that had developed between her pancreas and her colon, allowing the potential spread of bacteria, taking out more of both organs in the process.

The planned two-week stay turned into a downward spiral of emergencies. Internal bleeding led to emergency surgery and more removal of Megan’s colon. She was briefly on a ventilator.

Her mom began to worry about a funeral, as she had many times before.

"You go through the whole procedure — will I do what she wants?" Paula thought. "I lay in bed and I think, ‘What colors?’ ‘Who’s going to help me?’ "

But once again, as Christmas approached, Megan began to recover.During the latest hospital stay, Paula felt it was finally the right time to contact the family who gave Megan her precious Thumper. They sent a letter this month.

"Whoever gave my daughter the chance to live needs to know she takes care of their heart," she said. "She doesn’t take advantage of it."Small in stature with a high voice that suggests she is younger than her age, Megan has the maturity to understand the impact her cascade of illnesses has had on her family, particularly her mom. Divorced from their dad, who lives in Germany, Paula has raised the teen, her three brothers and one sister essentially on her own.

"I always tell her I’m sorry for everything because it’s a lot of money," Megan said.

But her mother sees what her daughter cannot.

"I live with an angel," Paula says. "I’m a very lucky woman."

On Friday, Megan earned her wings. She had the strength to walk up 24 hospital stairs and was healthy enough to eat steak and salmon.

With her mom and sister, she drove home to St. George to join her brother Lamar and her new puppy, a white Maltese, for Christmas.

She’ll be back soon for more tests. But for now, Megan’s proved — once again — she’s ready to fly.


Wednesday, September 14, 2011

Whats happened the last Week....

So Last Friday I got my port plased and Dr. Black got rid of my wort so  I have threre Stiches.. OUCH..... And I have to start Chemo on Friday.
** Update Soon**

Monday, September 5, 2011

HAPPY BRITHDAY THUMPER (Heart)


3 Years Old THUMPER on Friday September 2, 2011.

**Put Up Pictures Of Party When I Can**

‘Perfect’ Biopsy! (Deep exhale…….!)

My Biopsy was Friday on my Thumpers Birthday. they make a small incision in my Leg, and run a catheter down my vessel into Thumper's heart. They retrieve a tissue sample from my right ventricle of her heart……. or several pieces.  They measure the pressures in My heart, and approximate the pressures in the chambers they can’t truly access….. the left side. Then the biopsy tissue is sent to the pathologist, And they called us 7 hours later after the Biopsy and  the results are perfect they are 0 - 1 - 1 which is better than last time cause, last time they were 1- 2 - 2, so that's good.
 

Tuesday, August 30, 2011

Me In The News...

**LINK**

"Teen tackles chemo, again"
http://www.thespectrum.com/article/20110829/NEWS01/108290320


Was In The Hospitial Last Night

So Yesterday I got really sick , I was throwing up all day Friday, Saturday, and sun day. So we called cardiology, and they told my mom to take me to See doctor Niggard, and he admitted me to the Pediatrics in the hospital, and I had to get Fluids, Potassium, and Glucose. But, today i Fell allot better.
*** UPDATE SOON***

Sunday, August 21, 2011

The Only Way From Here Is To Go Up






On May 17th at school, I was starting to get sick to my Stamoach. I couldn't keep my Anti- Rejection Medicane Down, cause I was Throwing Up. By wednesday I was really sick, and we went to the ER in St.George, they were going to send me Home casue they thought I had a Stamach Virious,But my mom kept elling them there was something worng with me , and then finally a doctor did a aultra- sound, and found a llare mass in my abodommen. They told my Mom, and then she statred freaking out and she told them to call Primarys , then they Life Flitted up to Primary's Children's Medical Center that night. 

Thats when Dr.Nicholas met me , I really don't remember cause I was So sick, So all these docotor came in and out eplaining that it had to be taking out, the surgean 
Dr.Rollins wanted to go in and try to take the whole tumor out,but with all my history, the onocolgists wanted to just Biopsey it. I was still too sick to know what was going on and I hurt so bad, so they added me onto surgrrey for the 19th. Dr.Rollins led the surgrey team,began to do a byopsy, when he got in my tummy it looked like he could get the whole thing out so he cutted a bigger 
spot, thats when he found that it was attached to my stamoch, my colun, and my paceruase,so he took the biopsy,then we had to wait for the patholagy report. It was a long wait and it took till the 25 of may to find out what it was and what they could do. 
On the 26th of may in  the evening theytook me into surgrey and found not one mass , but two and they had to take part of my stomach, part pancerous, and pat of my choln 
with the larger mass, and the smaller tumor the had too take part of my jajunmen. They put me in the PICU for 1 day and then the next day back to the 
surgical unit to my favorite nurses and doctors. Dr.Rollins and Dr.Whipple,Dr.Evritt made extra sure I was taken care and nothing wrong could go again. And then I couldn't eat, and they placed alot of PICC LInes cause mine keept getting Infected. And my sweet mom and Brother stayed with me I was on TPN and Lippids for about 2 weeks cause my stamach coulndn't handdle food and they put in a NJ tube. Dr.Rollins came in every day and  explained every thing thats going wrong with me to me and my mom. they couldn't get all the cells of the timor so the oncolagist came in and explained what they could do. With these dismoid masses sometimes surgrey can make them come back faster, sometime chemo can slow them down, but I guess they well always come back. 
They wanted to start me on Chemo as soon as possible, but they wanted me to frist feel better from the surgey, wich didn't happen really fast. they wanted to start me befor I left but i was still to siick, I would better then worse, I could eat ice Chips the i got sick and had pancretitis. So I got to finallyy go home with the NJ tube, PICC LInee and a Cook Drain in my Pancerus on friday the 17th of june , I couldn't real well my mom was afraid to take me home, but with insurance they wouldn't pay for any longer in thee hospitial and the cook drain. I couldn't walk very good and couln't get out of bed alone. we had a hospitial ed in the front room, my mom and brother , and sister had to help me. 
I got stronger every day and was on sosyn antibiotic and tube feedings. By wednesday the 22nd, I was starting to feel strong enogh to walk to the bathroom but still needed help to get of the tolit. I went to doctor nygard in ST'George on thursday but by then i wasn't feeling good. but by sunday 26 of june we were  life flited back up to salt lake. By this time insted of the 2 bacterias i had , i know had 5. So I went to the PICU and had to go to the huntsmen center for some test to place a stent in my pacaraus.I ended back on the 3rd floor but in the green hall (the Medical Unit) and my mom fraked out again, cause I was in the wrog unit, so the but me in the treatment room onn the surical floor. I was reallt sick I still couldn't eat, I was on so much medication, a doctor would come in and said i could eat and then DR.Rollins came in and told me I couldn't.  They still didn't want me to start chemo. I finaly got moved across the hall after 2 weeks to a real room. Jacqueline, Lamar and Micheal helped my mom the whole time.
I then Was Moved to the Rahab Floor (Nero Science Trama Unit), Cause I had to do PT, OT, and Speech Threapy. And I was There For About 3 Weeks.
And I got Stronger and Stronger, I was moved back up to The Surgical Floor. And Then on 8/5/11 on my Blog I Posted:



So.... I'am Still in the Hospitial, and today I had Speech Thearapy, it was Fun, and then I was bored so i Decided to clean my Room, and then i went acrossed the hall andwent and saw my Heart Buddy Kadience, cause she was admited here yesterday at about 5p.m., but she doing good know... :)
Bad News.... 

So two days, ago my surgrey doctor came in and told me i could eat,cause i couldn't eat for 2 mounths,so i ate for the first time and it was really wired. And then about a hour ago my nurse came in and told me I Couldn't eat.... So Know I'm on clear liquids.
________________________________________________________________________________

So I Got to Go Home on Augest 8th ,I was so happy.



Saturday, August 6, 2011

Woke Up....

So I woke up about 9:30, and I took my pill and then i Throw up it was awful, But I Still get to go home, so that's good. Im just waiting for my mom to get here, cause she driving up from ST.George.
*** Update Again Soon**

Friday, August 5, 2011

Zzzzz

Going to Bed Packed Some Stuff..
Good night