We are excited to introduce to you two books from our
editor of 25 years, Sara Evangelos.
Sara has written two young adult books under the pen
name, Sara Webley.
Zo in the Roosting Tree tells the story of an 11-year-old girl
who wakes up one morning… as a crow! She doesn’t know how it happened, but
discovers she loves being a crow. Yet she must find the secret to becoming
human again. Follow Zo’s adventures as she learns to fly, plays games with a
goofy cardinal named Rufus, and surfs the wind with her wings in the
clouds. Kahr! Kahr!
Being Zo the crow is fun! But when Zo discovers the
dangers of her new life—owls and bobcats and cars—she misses her human family.
And time is running out; her family is leaving their vacation home at the end
of the month. Can a mysterious snapping turtle help Zo find the magic she needs
to go home again?
This nature-inspired fantasy by Sara Webley is perfect
for ages 7 and older. Illustrated by Robin Prisland.
Somewhere Besides Denver
takes place in 1907, with best friends Violet and Marion excited about their
upcoming trip to Europe—a rite of passage for wealthy teens after high school.
But they’re not too excited that Helen, a rancher’s daughter with a rich aunt,
is joining them.
All three teens know the rules for well-bred young
ladies: Don’t go anywhere without your chaperone! Don’t speak to strangers,
especially men! And when you return to Denver, settle into a life of boring
parties and pleasing your husband.
But they’re already restless.
What awaits Helen, Violet, and Marion in Paris, where
society rules aren’t as strict? Where they meet a famous fashion designer, a
ground-breaking female artist, and some fancy-dressed dogs? And in London,
where they join the fight for women’s rights?
Will their chaperone Lena, a rule-breaker herself, keep
them out of serious trouble while giving them the freedom they need to become
women of the new century?
Sara
Evangelos is a partner in JAS Group Writing and Editorial Services, addressing
the communication needs of clients in the area of human services. Sara edits,
writes and contributes to books, journals, newsletters, brochures, grant
proposals and reports. She is also a published poet. Sara earned her bachelor’s
degree in writing and psychology from the University of Illinois, and received
advanced training in technical writing and editing from Northeastern
University. She has worked for LA Kelley Communications since 1995.
I’m sitting at my desk, waiting for a snow storm to roll in, and thinking about how we are ending this amazing year. There was the usual travel to attend NHF’s and HFA’s annual meeting, and I also attended the Bombardier Blood movie showings in California (at FFF Enterprises and Genentech), Michigan, North Carolina and Utah!
My work was honored at a spectacularly beautiful gala hosted by Hope for Hemophilia in New Orleans, where I received a beautiful award and watched a video about my work–that was amazing and surreal! Save One Life, the international nonprofit I founded, received an award at NHF’s gala in September.
Laurie Kelley with NHF CWO Val Bias and Save One Life executive director Chris Bombardier
I cycled in Massachusetts to raise money for Save One Life while honoring the memory of Barry Haarde, climbed Kilimanjaro in Tanzania to raise money for it as well, and rode a bike for three days with the likes of Kim Philo and Michael DeGrandpre, through three states to raise money for HFA–Gears for Good.
Hiking Kilimanjaro
I visited Haiti, Tanzania, Kenya and the island of Zanzibar. Haiti was a less than 24-hour visit due to the violence, but something good came of it, as we established enough of a toehold to start the first ever hemophilia program in Haiti! If nothing else happened this year but this, I would be completely happy and call it a successful year!
Team Philo!
I visited many old friends and colleagues throughout the country, and also hosted visitors from India, the Philippines and Kenya in my home. I endured a torn meniscus, back spasm, altitude sickness or something like it, flipped over my handlebars in Maryland in a tunnel, and was hit by a car while on my bike in Massachusetts. But I’m still standing!
For fun I saw Metallica, the Rolling Stones, the Who and many other bands, visited the Museum of Natural History in NYC, Buddy Holley’s hometown of Lubbock, Texas and the crash site in Clear Lake, Iowa, and hiked up Mt. Washington in New Hampshire and all through Zion in Utah.
James Hetfield of Metallica… because Nothing Else Matters!
Save One Life was restructured and welcomed a new executive director, Chris Bombardier!
It’s been quite a year. And so we are finishing our 29th year of existence at LA Kelley Communications! Next year is our 30th anniversary…. 30 years of bringing original and ground-breaking publications, all free. We thank our sponsors for supporting our work here in the US, which supports indirectly our work in developing countries. And we thank you for reading our publications, allowing us to help bring news and insight about bleeding disorders to you, and for all your support for Save One Life!
‘Twas December 23 and all through the BDC*, Everyone was busy decorating their tree. Or lighting their candles or baking some sweets, Or messaging friends or sending tweets.
And wrapping up the year, here in Georgetown, We could hardly wait to share what we found. Rather than sending cards that end in the trash, We decided to do something rather rash.
Om Krishna
We love our boys and girls with factor VIII or IX, But many will never get factor at holiday time. Those overseas face a grim holiday With pain, swollen joints and sorrow they can’t allay.
We try to help them all throughout the year, But a special case came to us, that made us tear. A boy in Nepal, a faraway land, Was truly in need of a helping hand.
A medical team from Mary M. Gooley was there, To volunteer their services and provide great care. Surgery! A new knee! What rejoining they made, Until they learned: the prosthetic had never been paid!
The surgery was tomorrow! What to do? In desperation they reach out to you-know-who. And we said yes, of course we could. And the surgery happened, as it must and should.
If you don’t get a card from us, don’t feel slighted. Our Christmas budget went to a boy who’s delighted. He got a new knee, one that works right. He is our Christmas star, our Hanukkah light.
Movie of the Year!
His name? Om Krishna, and you can see him As he’s also a star in a new medium. Instead of watching this season a movie like “The Grinch,” See “Bombardier Blood,” by Patrick J. Lynch!
Om Krishna’s the one who lost his brother, Who lost his home, and only has his mother. But he never complains, and he’s grateful to be, Always wears a smile, and now a new knee!
We wish you a blessed holiday and happy new year,
Keep the poor in your hearts and share your good cheer!
From Laurie and all of us at LA Kelley Communications
*Bleeding Disorder Community
See the Bombardier Blood teaser here To sponsor a child like Om Krishna, visit SaveOneLife.net See more photos of Om Krishna and his home here.
Bubba did start to wake up, and that made us very happy. He opened his eyes and was almost immediately able to focus on Ashley. That made us happy too. Then he made a very unhappy face, an incredibly unhappy face.
He started sniffling. Then he started crying.
We were a bit
concerned.
The crying got louder. The crying began to include screaming.
We didn’t have the
slightest clue what was going on. What was wrong? Did his chest hurt from the
surgery? Was he scared because he woke up somewhere new?
Let’s take a break for a learning experience. You may or may not be aware that some small children have an adverse reaction to anesthesia. The reaction does not occur when they are initially anesthetized; it happens when they wake up. It’s called emergence delirium.
The attending
nurse reassured us that this was not uncommon. She did acknowledge that it was
difficult. I’m sure she’d seen more than enough parents come through and
experience angry kid syndrome upon waking. We were also told that they could
give medicine prior to surgery that would decrease the severity of this
reaction.
The whole process
lasted about 15 minutes. Bubba slowly calmed down and began to resemble the
child we sent into surgery, not the angry little monster that had emerged into
the recovery room. He was obviously exhausted. All of us were ready for it to
be over. We were cleared to head back to his room.
Bubba had made it
through the surgery and we were good to go. The reaction to coming out of
anesthesia was actually minor in the grand scheme of things. Ashley and I were
on our way to becoming more active in the role of Bubba’s care. With the port
in place we’d be trained how to infuse him at home. All of the stress that we
were currently experiencing would be more than worth our troubles in the end.
The true test
would come when it came time to test the port. Being a medical newbie, I had no
idea how complicated or how simple this process would be. Bubba would be given
sufficient time to rest, but we all knew that a functional port was the only
path to us getting home.
Later, I joined three nurses in an exam room located right down the hall from our hospital room. It might have been a procedure room. The combination of fluorescent lighting and white overload made the room incredibly uncomfortable.
The goal was to ensure that Bubba’s port would function properly so we could determine how much time he’d need to remain in the hospital. The nurses were upfront and honest about the fact that he would not react favorably to this process.
My job would be to
help hold Bubba still and do my best to calm him. I wanted to do my best on
both fronts. He remained accessed because the surgery site would be far too
sensitive to access with a new needle. Our goal was simply to connect a line in
and make sure that everything could be pushed with no problem.
Bubba is accessed,
so the nurse is now ready to push saline as soon as she gets blood return.
No blood return.
That’s fine. Ports can be finicky. She tries again. No blood return. Not a
problem, we’ll just put his arms above his head and that’ll open things up. A
pattern began to emerge. The nurse could not get blood return.
Bubba was rolled
onto his side.
Bubba was allowed
to sit up.
We maneuvered and
finagled him around trying to get blood return. Each time the nurse drew back
the plunger nothing happened.
Bubba was getting angry. He got even angrier as the nurses tried to adjust the needle that was used to access the port. Any form of sedation or local anesthetic had worn off quite some time ago. He was now a one-year-old with a needle being moved around in his chest.
The noises started
as intermittent crying. The intermittent crying became more constant. The
crying was then joined with some attempts to get out of our grip. My willingness
to keep him on the table was beginning to fade. I just wanted to pick him up
and get him out of the room. Bubba soon began screaming at the top of his
little lungs. His face was soaked with tears and bright red in color.
The issue with the port simply added to our emotional ups and downs. We began as parents frightened because their small child needed surgery. The emotional upswing came when we thought about more effectively managing his condition. We were scared to death when he went back for surgery and elated when he came out. My spirits hit rock bottom again when I went back to the room to tell Ashley that the port was not functioning.
It was not long
into the day when a physician approached us.
A gaggle of short
white-jacketed medical students were in tow. To be completely honest my first
thought was, “Ugh.” The last thing I needed was the medical neophytes peering
over us as the actual doctor spoke.
The physician
explained to us that it was clear the port was not functioning.
The x-rays that
they’d taken showed the line from the port was pushed up against the wall of
the vein. This meant that there wouldn’t be any blood return. The opening on
the end of the line was simply sucked up against the wall of the vein.
The med students continued to hover. I began to fume.
We were informed
that the line would need to be moved in order to make the port functional.
“So, will he need
to have another surgery?” I asked in a noticeable irritated voice.
The physician
answered yes.
“So, the first
surgery was done incorrectly and now he has to go in again?”
This is the type
of time that my wife would often describe as “Derek acting like an ass.”
I should have been more aware that there was no reason to be angry with the surgeons. They were trying to thread a line into the body of a baby. That cannot be an easy task.
The physician
calmly indicated that the line placement was not optimal and that Bubba would
need to have another procedure. They wanted to schedule surgery as soon as
possible. The surgeons would be able to use the existing incision.
We ran into one major issue: clotting factor.
There was none. You
can’t operate on a hemophilia patient unless they’re factored up. Without
available factor, there would be no surgery.
We were fortunate
to have an incredible point of contact for our specialty pharmacy. Her name was
Julie and she was aware that we were headed to St. Louis for Bubba’s surgery.
In fact, she had given me her personal cell phone number in case anything
happened. It didn’t really register at the time that the number might come in
useful.
Our nurse told us
that it could be a few days before they could be restocked.
I was not ashamed
to call Julie. As expected, I didn’t get her at first. She probably saw a weird
number come up on her cell and didn’t feel like hearing about her car’s expired
warranty.
… and then Julie
called back.
I explained what
was going on and how we were certain she was a factor wizard who could make our
necessary medication appear with the wave of a wand. Problem number one was
that the pharmacy could not ship to the hospital. We found out that insurance
would cover having Bubba’s factor shipped to us in St. Louis. We’d just take
possession and then hand it over to the physician.
Julie was awesome
and, I imagine, is still awesome. I doubt she’ll every read this article. If
she does, Julie you are a superhero in the eyes of the Markley family.
We made one major
change. Bubba was given medication prior to surgery that would help us avoid
him turning into a screaming little devil spawn when the anesthesia wore off.
We had faced enough challenges in a short time and there was no reason not to
stack the deck in our favor in any way we could.
The outcome this time was far better. Surgery went quickly, Bubba did not awake yelling and crying, and we were able to ensure that the port was functional. Our emotional rollercoaster had finally come to a gentle stop instead of catching fire, going off the rails, and slamming into an animal shelteer filled with kittens. Things were much better the second time around.
Now the work would begin. Ashley and I would be trained to administer factor twice per week via Bubba’s new port. A new chapter in our life had begun!
Derek Marley lives in Saltillo, Mississippi with his wife Ashley and their children Abbey and Bubba. He is the executive director of two University of Mississippi regional campuses and an assistant professor in the school of education. Ashley is a fourth grade teacher in the Tupelo Public School District. Derek is author of The Bubba Factor, which can be ordered on Amazon.com.
With Abbey happily moved over to a hotel, it was time for us to focus on getting Bubba to sleep. His little-kid incarceration was a concern. The main thing I remember was how incredibly horrible I felt seeing him in a hospital crib with metal bars raised on all sides. This had to be one of the saddest moments of my life. We knew he had to go to sleep, which he would not do quickly. He’d sit up and we’d have to reach through the bars to comfort him. It would’ve been easier to just push the bars down and play with him. Unfortunately, we knew he needed sleep. If we kept getting him out of bed, we’d be up all night.
I was treated
to having the lounge to myself. The chair/bed wouldn’t turn out to be the
strangest thing, nor the sleeping in the middle of a lounge area. There was a
shower in the lounge. You can’t make showering that close to strangers feel
normal. Nothing else about our day was normal or comfortable. My son was in a
metal cage and my wife was sleeping in a recliner beside him. We were in the
middle of St. Louis and our son had blood that didn’t clot. We were going to
send our small child into surgery, and he was going to have a metal disk placed
in his chest.
The next
morning I went down the hall to see Bubba and Ashley. We were about to have a
very long day. We’d begin by having Bubba factored up. The people at St. Louis Children’s
Hospital were adamant that his factor level would be through the roof to assure
no complications during surgery.
Surgery day
always means that the patient will be given some type of medication. Bubba was
given medication. He went immediately loopy and it was hilarious. I’ve often
wondered if they give little kids their meds slightly early so the resulting
goofiness is something the family can enjoy. You’re given a break from the
handwringing and gut churning that has been gnawing at you.
The unfortunate truth was that he would be heading to a surgical suite and we’d be left outside trying to put forth a normal countenance that masked the fact we were both on the brink of sanity. There was no parenting class called, “How to Not Go Feverishly Insane Because Your One-Year-Old Child is Having Surgery.” My palms are sweating a little bit right now just thinking back to that time. This is one of the uncomfortable truths about raising a child with a serious medical condition. You will have to experience things that are not a part of the lives of most parents. These things will be stressful and unpleasant. These things will make you feel like you want to vomit. These things will be necessary to assure that you can help your child deal with whatever disorder, condition, or ailment has become a part of his or her life.
After roughly
32 hours (my estimation may be skewed), the physicians emerged to tell us that
the procedure was complete and Bubba was headed to recovery. Everything had
gone as planned and the port was in place. Later that day the nurses would have
to access the port to complete his next infusion. Post-surgery infusions were
crucial to assuring that the healing process began properly.
There are not
many feelings in this world that allow you to decompress as fully and quickly
as you do when you’re informed that your child’s surgery went exactly as
planned. After what seems like forever, you are allowed to let your
weapons-grade stress level return to somewhat normal human proportions.
We were taken
back to a general recovery area. Ashley was holding Bubba and gently speaking
to him. We just needed his eyes to open. Any small indication of being awake
would’ve be great. This should’ve been one of those Disney moments when the
little kid opens his eyes, sees his mother, and produces a massive smile. Then
a small sparrow would land on Ashley’s shoulder, chirp happily, and a warm
sunset would be visible on the western wall of the recovery room.
That was not our outcome.
Next week: Post operation success?
Derek Markley lives in Saltillo, Mississippi with his wife Ashley and their children Abbey and Bubba. He is the executive director of two University of Mississippi regional campuses and an assistant professor in the school of education. Ashley is a fourth grade teacher in the Tupelo Public School District. Derek is author of The Bubba Factor, which can be ordered on Amazon.com.
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