2hearts Publications
Close WindowShivan and Lindsea.
WEATHERING THE WESTERN CARIBBEAN, copyright Nov. 2005 Susan L. Friesen
Published December 1, 2005My first travelogue about Lindsea’s Make A Wish trip.
I am experiencing jetlag, end-of-cruise blues, and sleep deprivation (needing a vacation from our vacation). We enjoyed almost nonstop action on our weeklong trip.
Our family just returned from an amazing adventure to Belize, Costa Maya (Mexico), and Grand Cayman. Make A Wish Foundation sponsored our trip; also Royal Caribbean International sponsored our cruise to the Western Caribbean. Weatherwise, we were concerned the trip might get canceled due to Hurricane Wilma. Last year, Lindsea's Make A Wish trip to Grand Cayman was canceled due to extensive hurricane damage. Fortunately, the hurricane-strength winds dissipated and our ship traveled in mostly calm seas. The only cancellation was to Cozumel, as that country suffered extensive hurricane damage. Citizens there worked night and day to clean debris, so cruiseships are now stopping there, but Explorer of the Seas didn't drop anchor there.Weather conditions were near-perfect during our sea cruise, light trade winds blowing and only causing small whitecaps on the crests of waves. We stood on deck and watched many flying fish soaring for yards. It was an amazing sight, along with some orange blobs I thought were jellyfish, but Chip Maxwell, a computer scientist with the University of Miami's Ocean Lab on the ship, told us the blobs were seaweed. I didn't know seaweed came in orange hues.
I thought we'd face hot weather in the Caribbean, but the conditions were quite tolerable, not much humidity or high temps. We didn't get sunburned as we applied sunblock SPF 50 sunscreen. Sometimes wind gusts picked-up, so I had to hold my new skipper hat in hand. We visited two pyramid complexes in Costa Maya, Mexico-- Dzibanche and Chacchoben. You can view a nice slideshow of Dzibanche here: http://www.akumal.tv/mayaruins/image_html/dzibanche01.html I hope to upload some great photos of our experience at this pyramid soon, too. So, if you want to see my writings and photo spread later on, please email me and I'll be sure to send you my travelogue when it's finished. I recommend this good article about Chaccoben: http://www.locogringo.com/past_spotlights/feb2004.cfm Seeing one of the Mayan ball courts was most interesting to me. Our tour guide, Manuel, told us that the winner of the game willingly sacrificed his life to the gods.
The weather was perfect for snorkeling in Grand Cayman. We looked silly in our flippers and mask and snorkel, even sillier belly-flopping off the side of the boat to begin our snorkeling adventure. Two of our girls accompanied me on the skindiving to a coral reef. A scuba diver threw some fish food to a gigantic eel and a thresher shark. It's a good thing we had some underwater cameras: hopefully, I took some good shots of the gape-mouthed eel and the woman diver feeding the shark. The shark was harmless, so we had no fear swimming near it.
The party-atmosphere boat next took us to Stingray City. Crew members held pieces of squid (calamari, if you ate it on the ship!) and the gigantic stingrays flew gracefully to their hands and swallowed the bait. Some of the rays weighed more than 250 pounds. I wanted to see the rays underwater, so looked in the aquamaine sea for awhile until I felt the weirdest sensation: a ray sucking on my back! I panicked and jumped up, the ray flopping off my backside. One of the crew laughed at my antics as I shimmied out of the water, looked freaked. Lindsea then clung onto me, screaming, thinking if she kicked her leg the long stingers would inflict poison. I calmed her down and shared the stingrays only stung if you rubbed them the wrong way. If you pet their bodies from the face down, they are soft. Go the other way, then the barbs on the stinger would shoot the poison. A crew member brought a small stingray up-close and Lindsea enjoyed touching it. Ken then took Lindsea around the rays while I snorkeled some more amongst them.
In Belize, we enjoyed another day of sunshine and little humidity. We started off on a larger double-decker boat. The pilot gunned toward shore. Once near the banks, he slowed down to 5 miles per hour, as it was a manatee zone. We did see the snout of one manatee, but it was too far to photograph. We also saw a crocodile sitting lifeless on the sand. It reminded me of an animatronic creature from Disneyland's Jungle Cruise, put there to impress. Next, we went on a smaller boat which took us many miles up the Margay River. We spotted white egrets, blue herons, iguanas in various colors (huge specimens in shades of yellow and brown lazed on tree boughs), more crocs, turkey vultures, and spider monkeys. We were taken to some outdoor picnic tables. Native Belizeans in a very small village fixed us some Caribbean jerk chicken, rice and beans, and a salad. We chose a soda from old-fashioned glass bottles. No diet drinks were available, so I had to make do with regular Sprite. A very skinny dog hung at our table and we fed it the remains of our lunch. Our three daughters befriended some craftsmen who gave them little trinkets of bobbing turtles and a lovebug. Lindsea lost her lovebug on the bus on the return back. Someone else sat in her seat and got it, she said.
At the Belize Zoo, Lindsea’s wish was fulfilled—to see black howler monkeys. We brought a still camera and digital, so were able to take good close-ups and a movie of the loud beasts. They are recognized as the loudest land mammal on earth, while the blue whale is the loudest sea creature. A very nice man on our cruiseship, Jason, loaned me his super-zoom Canon lens. He’d forgotten his camera batteries, so took just digital photos and let me borrow his lens. He’d heard us say this was Lindsea’s special trip, so he wanted to make it nicer for us. Amazingly, Jason’s father, a physician, was awaiting a heart transplant. He received his new heart on Thanksgiving day. That holiday is an extra-special day for us, too, as that’s when Lindsea was released from the hospital after receiving her transplant two years ago.
Before I spotted the monkeys, I heard an almost eerie, guttural noise seeping through the forest. They’re called howler monkeys, but the noise didn’t sound like a howl, but a banshee’s wail, if I ever heard a banshee. It’s hard to even describe the sound, but the male howlers put intense effort into their screams. One male sounded-off to another much further away. In the lens, I spotted the black monkeys cavorting in the branches. One male stopped, raised his head, opened his mouth as wide open as it would go, then let loose his loudest shout. The gleeful, shocked expression on Lindsea’s face when hearing the monkey din made the whole trip worthwhile.
Their Mum's guest editorial in local paper. (Santa Maria, California)
used with permission
April 20, 2005
As a parent of two young daughters with heart transplants, I was pleased to read a recent proclamation by President George Bush designating April each year as National Donate Life Month. He stated that this month is “a time to raise public awareness of the critical need for organ, tissue, marrow, and blood donation.” Sadly, in the United States, more than 87,000 people are on an organ donor list. Although about 74 people receive an organ transplant each day, 17 people die every day because of donor shortages, according to the Organ Procurement and Transplantation Network, a private nonprofit group. A single donor can help many people receive vital organs; also skin, bone marrow, and retina donation. An individual must indicate their desire to donate by informing relatives and loved ones (if under 18, must get parental consent). Next, on a driver’s license one must declare intent to be an organ and tissue donor.
I never thought our family would be placed in the unbelievable situation of needing to wait not once, but twice, for a heart to save two daughters’ lives. We waited a few months to receive the gift of life for Shivan, now 10 (transplanted January 29, 2001); about a month’s wait for Lindsea, now 8 (transplanted November 20, 2003). Both girls were age 6 when they fell ill to a mysterious virus, yet unnamed, which ballooned their hearts. The diagnosis: idiopathic (unknown cause) dilated cardiomyopathy.
We almost lost Lindsea, as she waited 56 days in the pediatric intensive care at UCLA Medical Center. A blood clot barely clung to her ventricular wall. If it broke loose, doctors warned she’d die instantly of an embolism. A few weeks into her hospitalization, we were told a donor heart was ready. His face drawn, the transplant surgeon walked into the surgical waiting area to tell us the heart was too large for her chest cavity, that the surgery was canceled. That heart would help another patient.
The letdown was incredible. Lindsea asked if she was going to die, wondering if a heart would arrive in time, and would it fit her? She asked an ICU doctor the question point-blank’, however, he couldn’t reassure her that she would receive an organ, but that she should hold great hope. Dr. Mark Plunkett, her transplant surgeon buoyed her spirits when he said, “There’s a reason for everything. Your new heart will be just right for you.” When she did receive her new heart a few weeks later, the doctor beamed afterward, saying she was only on the heart bypass machine two hours and that the heart fit perfectly.
We owe a huge debt of gratitude to the two donor families that offered their child’s heart. Through the help of a news reporter, Greg Hardesty, at The Orange County Register, we were able to meet Shivan’s heart donor family on Mother’s Day eve a couple years ago. We have yet to meet Lindsea’s donor family. Shane Rooney, Shivan’s donor (Shivan’s name is even the female variant of Shane!), would be graduating from high school this year—the same high school I graduated from in Huntington Beach! He was killed by a drunk driver only a few houses away from his own. He was only 13.
Fortunately, the word is getting out. The United States Health and Human Services Secretary Mike Leavitt announced that 26,984 Americans received an organ transplant last year, setting a new national record. Transplant candidates who died waiting for a life-saving organ fell under 6,000 for the first time in six years. Hopefully, the day will come when no one will have to die for lack of a needed organ or tissue. Each day I see our girls healthy and happy, I am thankful for the technology and medical advances-- and for the unselfishness of the parents who donated their child’s heart.
The federal government’s website on organ and tissue donation: http://organdonor.gov/faq.html
Frequently asked questions about organ donation: http://organdonor.gov/faq.html#1
Susan Friesen, 423 N. Lucas Drive, Santa Maria, CA 93454-3850 email: susan@ken-sue.com
LIGHTNING DOES STRIKE TWICE
Published on gaeashaw.com
by Susan Friesen (copyright 2005)
(Published on 2hearts with permission)
My husband, Ken, and I are proud parents of five children. Our two eldest children are athletic young men, David, twenty-two, a U.S Marine, and Glenn, twenty-one, a lifeguard and college student. We were pleasantly surprised when I became pregnant with Shivan almost eleven years after Glenn's advent into the world. I prayed we'd have another child, so Shivan wouldn't feel like an only child. Imagine my surprise when Alaina arrived a little over a year later, then Lindsea not too long after that. So, with one son entering college and another a sophomore in high school, we found ourselves with a couple of toddlers and a preschooler to raise, as well.
The girls were very healthy, as our sons had been throughout childhood. Shivan was born with a heart murmur that supposedly closed by age two. We were told not to worry about heart problems with Shivan, only to make sure when she began dental cleanings to take an antibiotic before and after treatments.
Dr. Bilal Harake performed an echocardiogram which showed Shivan had only about seven percent of typical heart function. A heart transplant must happen if she would survive. We waited about three-and-a-half months for Shivan to receive the gift of life on January 29, 2001. Doctors told us it looked like a virus had attacked Shivan's heart. We were told it didn't look like familial cardiomyopathy (genetically caused), but dilated idiopathic cardiomyopathy (viral-based).
Once home after all the follow-up heart biopsies at UCLA Medical Center, we thought life would get back to semi-"normal." We knew, though, that life would never be the same, as Shivan's pill case was filled with lots of pills she had to take three times a day. She'd have to take immune-suppression drugs the rest of her life.
A couple years went by. Lindsea got sick in early October with a flu that kept recurring. A flu bug rippled through the community at that time, so the pediatrician just said to let the flu take its course. It stopped, but started-up again. My husband's face literally whitened when he noticed the same bloated look and puffy abdomen. Amazingly, Lindsea fell ill the first Friday in October – the same timeframe as Shivan, when a doctor declared she needed a transplant. An ambulance arrived at Marian Medical Center to transport Lindsea to UCLA.
Lightning does strike twice. Unlike Shivan, Lindsea couldn't wait outside the ICU for her new heart. A large blood clot barely clung to her ventricle. She had to remain bedfast in the ICU. She waited forty-nine days for her heart and it was a perfect fit, thank God. Dr. Mark Plunkett, UCLA transplant surgeon, possesses, it seems, angelic hands.
We've been told that having two daughters with a successful heart transplant exceptionally rare, a one-in-ten-million situation. Now that two girls fell ill to a similar condition, it seems their heart disease is genetic, but we've been told nothing for certain. We don't even know the girls' diagnosis, but doctors are looking into this. Baylor University in Texas is involved in a study of cardiomyopathy and we’ve provided the girls’ blood samples.
Genetics is still a relatively new science. Even though the human genome has been mapped, researchers still work relentlessly to discover genetic markers that may give us a clue to what happened to our daughters.
Because of the unselfishness of heart donor families, our girls received sound, healthy hearts. All three of our daughters work hard at their homeschooling lessons. They love creative writing, illustration, and reading. Lindsea and Shivan are excited to take part this year in the World Transplant Games in London, Ontario, Canada. They’ll compete in swimming, track (50 yard dash), badminton, and five pin bowling (Canadian-style bowling). We are so proud of all our kids!
If you have any questions about organ donation or heart transplantation, feel free to write:
Susan Friesendolphin_dancer@comcast.net
See websites:
http://www.ken-sue.com/
http://www.2hearts.org.uk/children/sisters.htm
http://www.geocities.com/susanfriesen_99/Shivan.htmlThis is an archive page for 2hearts.
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