Announcement About Angel Donor

This pandemic hit everyone pretty hard over these past few months. People are getting sick, losing jobs, and businesses are closing. The writing industry is no different, especially for smaller publishers. 

My book, Angel Donor, was created to help other children going through the transplant process. It is more than just a book to entertain. It is a book to provide help, connection, and comfort to those children going through the same thing. So it is with this in mind that I am sad to report that the pandemic made it too hard for my publisher to sustain their business, and they had to shut down. 

However, since I feel that this book is important and needed, I've decided to republish it now that I have the right reverted back. Illustrator Samantha Bell has granted permission for continued use of the illustrations. While I am sad to part ways with Guardian Angel Publishing, I'm happy and relieved to be able to create a second edition of this book. 

One of my plans is to create a hardcover edition, which I believe has always been missing. I'd also plan to do another Kickstarter or Indiegogo campaign to help make this happen. More updates will come as plans develop. 

For now, know that this is not the end of Angel Donor, but a new beginning. 

Feeling Thankful

I've always been grateful for Jackie and Anthony's medical teams. They truly stopped at nothing to make sure they were in the best of health despite the horrible diagnoses they had. So many times they exceeded my expectations. Whether it was tending to their care, stabilizing them or coordinating emergency care, they have always come through. So, it is no surprise to me to see the dedication and bravery the medical profession is showing in combatting the novel Coronavirus.

As a mom of 2 transplanted children, this disease scares me to death. I constantly worry and make sure they are not exposed. Yet, when the rest of the world is distancing from it, the medical profession is gunning for it head-on.  Knowing doctors and nurses as long as I have, I know they would settle for nothing less.















For all the help they have given my family I wish there was a way to help them now. And so I do what I often do when I want to help but have no means to do so - I write. So, medical professionals everywhere, this is for you.

What Happens After a Transplant

It's been over a month since my son recieved his #giftoflife . Life is very different after a transplant. Sometimes it is tough to get used to it. For example, there were so many medicines he had to take while managing his kidney disease. Now he has a whole other regimen that is completely different. The doctors told us as he gets farther out from transplant that some of the meds will wean down and will be stopped.  As much as we were aware that he would have different medications, it felt strange to just switch it up. But it is a change we are glad and grateful to make!

Another  thing he is getting used to is taking precaustions so that he doesn't catch any colds, viruses, etc. They can easily turn into a more serious infection since he is now taking medications to suppress his immune system. Handwashing and sanitizing are constant.

Doctor visits are frequent the first few months so that they can monitor the healing process and help stabilize the amount of medications needed.

The toughes in my son's experience is the amount of fluids he is required to consume. His kidney needs to be well hydrated so they want him drinking 2 liters a day.

As time goes on, these things ease up more and more. Pretty soon there will be a stable routine. All of these things have greatly improved his quality of life and he is forever grateful to his donor and donor family.

A day's worth of meds

Anthony and Kidney Transplant

Who knew just two months ago with my last post that Anthony would already have his new kidney. I'm this was due to a mix of divine intervention and timing.

The process of being listed for a kidney transplant lasted from the end of December through the beginning of April. We were always visiting the hospital getting tests and evaluations to ensure Anthony was a good candidate to receive a kidney.

It seemed the odds were stacked against us from the beginning. Just as the evaluation process started, we discovered a temporary lapse in insurance. Thankfully the hospital was able to work with the insurance and minimized the time  we had without coverage. 

Another thing that came up during the evaluation was concern about papilledema (swelling of the optic nerve.) However, everything finally worked out and he was officially listed as active on the kidney transplant waiting list on April 9th. Meanwhile, his aunt was going through evaluations to see if she could be a living donor (Thanks Aunt Amy.)

We were relieved that the process was complete and knew that waiting for a kidney could take a long time.  However Sunday evening on April 14, the transplant team called and said they might have a kidney for Anthony. We left for the hospital that night. After testing both Anthony and the donor's kidney again, the doctors felt that the kidney was a good match for Anthony and he went into the OR early Tuesday morning.  We found it a blessing that he received his kidney not only during National Donate Live Month, but also during Holy Week.   Many people have been keeping Anthony in their prayers, and I have no doubt that they have been heard and answered. It truly has been a miraculous journey.

In my local community we are raising funds to help with the initial costs of recovering from the transplant. One of the ways we chose to do this was to remind people of the book Angel Donor. Whenever Angel Donor is purchased (especially through Guardian Angel Publishing), I earn royalties which can be put towards the costs.

You can read about his updates on his Go Fund Me Page as he continues the recovery process. 

Twice in One Family

I felt it was important to talk about what has been going on lately. Yes, Angel Donor was inspired by my middle child who was born with a liver disease and needed a liver transplant. Angel Donor was a way for us to tell her story.

Now, it is her brother who is going through the transplant process. He is in need of a kidney. It is rare for something like this to strike a family twice in a row.  He was born with only one kidney and that kidney is in the advanced stages of kidney disease. 

In January he began his evaluation for a kidney transplant. The process is still going on, but should be finishing up within a month or so. 

They say every experience is different, and this is no exception. I catch myself thinking, "I don't remember it being this stressful before." Maybe it was just as stressful, but everything moved so fast.

Howevers tressful it is, we know we are aiming for a healthy and better quality of life. 

The First Surgery #JackiesStory

The days before Jackie's surgery went by in a rush. While we were still at the surgeon's office the day of her diagnosis, the doctors were already scrambling to set up a date for surgery. They insisted the earlier, the better. With Biliary Atresia, the longer the bile flow is blocked, the more damage is done to the liver. I didn't know it then, but as I learned more about the disease, I found out that this surgery(called the Kasai procedure) worked best if it was done within the first four weeks of life. The longer we waited, the less likely it would be successful. The Kasai essentially is a surgery to create another way to restore bile flow by attaching the intestines directly to the liver in place of the damaged bile ducts.

                                                         Jackie and Mom a few days before surgery

The morning of Jackie's surgery I felt like I was caught in a dream. We were moving around, gathering her things and making sure we were ready to go.At the same time, I was full of anxiety. What was going to happen? What if something goes wrong? Will her liver be okay?  I remember my husband at the time took a picture of me holding her. I wasn't sure how I felt about it at the moment (though now as I look back, I'm glad he did.) since my mind was racing with such anxiety. 

The whole process of checking into the hospital and arriving to Surgery seemed so detailed, however as the years moved on, it became a second nature to us. We checked in and waited in the waiting room. A few moments later we were called by a nurse to the intake area. We had to change Jackie into a gown as the nurses gathered all her information. We met with so many people: nurses, her surgeon, the anesthesiologist. Finally the time came for them to take her back to the surgical area. 

This was a moment I still remember clearly. There are few times in life when a memory is so clear and so vivid that it seems like it just happened. This was one of those memories, I gave her a kiss and then the nurse gently took Jackie from my arms and began to walk away with her.  As they moved, they became smaller and smaller until I could barely see Jackie's yellow gown. My only thought, even though I knew she would be well taken care of, was , "They took my baby." I tried not to think of all the "what ifs" that ran through my mind earlier. 

The next several hours seemed endless. The doctors sent updates out to us as time went on, but I was still a bundle of nerves. Finally, around 6:00, Doctor M, (the surgeon) came up to us. He told us she was out of surgery and should be waking from the anesthesia shortly. He then talked about her liver. He was so relieved we had the surgery so quickly. The condition of the liver was pretty bad. He said the color was brown. I had a maroon sweater on that day and he said a healthy liver is more the color of my sweater. He reassured us that they will do everything they can to get her better.

After the surgery I began to seek out online support groups. My favorite has always been Class Kids.This is an amazing website dedicated to helping families of children born with liver disease.  I'll talk more about them as the posts go on, as they have been with us for much of Jackie's journey.  

Once we came home a few short days later, I knew we had a long way to go, but hoped this surgery would provide her some healing. Stories I heard about other babies who had the Kasai procedure gave me hope. There were some "babies"  who have gone all the way into adulthood without many complications. As for us, we were grateful she made it through the surgery fine and we took it one day at a time.  

The Diagnosis #JackiesStory

Before we knew it, we were on our way to Jackie's appointments.  The first stop was in Radiology for a Hida Scan, a test that can diagnose diseases of the liver and bile ducts. She had to get an IV with fluid that would make the liver and bile ducts visible in the image.  

After that, we went to see the GI doctor. At this point we were getting tired and were continuing to hope that this was all about the doctors being cautious. However, those hopes diminished when we visited the GI. As we waited in the exam room, I changed her diaper. Right in the middle of that, the GI walked in and asked to see it. The contents were a pale white. He expressed concern at the coloring and told us he was going to send us to the surgery office immediately. When he returned from contacting Surgery, he briefly explained that the white color in her diaper was a sign that there was no bile leaving her liver. 

I was too confused and shocked to really react to what I was told. At the moment, I was still experiencing the situation, and everything was moving too fast to react right away. I do remember that as we pushed her stroller across the parking lot to the main hospital, I had an epiphany. (I had lost my job at the end of my pregnancy and was questioning my direction in life). It was at that moment when I knew. This was what I was here for. This is what I was put on this earth to do. 

Jackie Pre-Surgery

Once we arrived at the surgeon's office, things seemed to move even faster. Doctor M already had all her information in front of him. He explained that what our baby had was called Biliary Atresia. In my head I wasn't even sure I heard that right. "Billy who," I asked myself.  The doctor explained it in concrete terms for us. He described it as imagining you are trying to get out of your front door and instead of an open door, there is a brick wall. There is no way for you to get out. He explained the bile ducts (the doors in the liver) are blocked (the brick wall) and can't exit the liver.  He explained this leads to scaring and infections. I think he knew we weren't ready to process the fact that it can also lead to liver failure.

He then told us that he wanted to do the Kasai procedure, a surgical procedure to help restore some bile flow in the liver. He told us that it may not be a permanent fix. He had us wait in the waiting room as he scheduled the surgery. He said it worked best when done within the first month of life. Yes, this was all before she was 4 weeks old.

I don't remember much from the blur of that day, but I do remember getting a call from the pediatrician's office while we were still at the surgeon's office. The doctors and the surgeons were telling me that this disease was not my fault or the result of anything I did when pregnant. 

We finally left the surgeon's office. I'm not sure how I was able to sleep that night. I was still processing the last 3 days and nothing seemed "real" at the time. I knew I had to get some rest, though because we had to be ready for the surgery that would be happening in just a few short days ahead. 

Up Next: The Surgery

From the Beginning #JackiesStory

                                         INTRODUCTION

What you know about me is that I am an author and have a daughter who was in need of a liver transplant. You may know of my children's book on the topic titled Angel Donor.  However, there is so much more to our story than that. There were trials, dramas, fear, and a whole bunch of faith. Today,with Jackie's permission, I'd like to begin to share that journey with you. 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Finally, she was here! December 9,2001 my second daughter was born. I held her in my arms just moments after her arrival. I studied her face as any mom has done in those first few moments. She had fine dark hair and she snuggled right up to me. 

As I looked her over I noticed her coloring. At the time I was completely clueless about liver disease, but I noticed she seemed a little darker to me. I'm 100% Italian and she was a newborn so I chalked it up to her either having a more ethnic look than I had or she just had a little newborn jaundice. Nurses seemed okay with her and didn't show any concerns. Neither did a pediatrician.

Another thing that struck me was her first wet diaper. The liquid was very dark. I remember looking at it and thought it was odd as I never noticed that with my first born. However, I once again dismissed it and figured it was something that will improve with more feedings. 

Speaking of feedings, she often ate very little. Her first weight check (at about 2 weeks old) showed she lost some weight since the hospital. Although it was normal for newborns to lose a little weight, they were concerned since she didn't eat as consistently. Her regular pediatrician was away for a few weeks. In the mean time, she had a few more weight checks with little improvement. 
She also still had that jaundiced color to her, so the doctor suggested placing her in the sunlight to help break it down.  

Determined to help her get rid of the jaundice, I was sure to place her in the sunlight where ever we were in the house. One clear memory of that was when I was baking banana bread. I brought her bassinet in the kitchen as we get a good amount of sunlight there during the day,

The time came for another visit to her pediatrician. She was about 3 1/2 weeks old. Her regular pediatrician was back and looked her over. He also felt her abdomen area and said he could feel her liver. This new information combined with her feeding, jaundice and weight issues  caused him to order lab work. This was the first of many, many, many blood draws in her life. She was so good. However, as anyone can imagine she was pretty mad when she felt the needle. 

A few hours later we got a call from her doctor who said her liver labs were very high. He got in contact with our local children's hospital, set up several appointments and ordered medication. At the time it was such a blur. I remember him telling me to fill the prescription right away because she'd need her liver functioning as best as it could for her  radiology "scan". 

I was a little nervous, but I had no idea what awaited us over the next few days. In the mean time, I tried to remain calm and continued to take care of Jackie as best as I could. 

Up Next: The Diagnosis

Until Next Time

My daughter returned from her Transplant Game adventure last night. The hours counting up to when she would walk through the door moved slower than I ever could have imagined. I had an endless list of questions: How was the flight? Did she make friends? Did she take all of her meds? Did she drink enough water?  Did she get tired? What was her favorite part? What did I miss that was not posted on Facebook? What were her best moments? What didn't go well?

Finally, though, the moment came. I opened the front door to call in my other children, when at that same moment Jackie walked in with her father. I screamed, then hugged her. It was the longest we have been away from each other -or so it seemed. I knew she had a long day, so I tried not to bombard her with questions.

If you've been following my Angel Donor Page or my Facebook Page, you probably caught a few of my constant updates. The basic rundown is that she competed in Track and Field, Basketball and Bowling. She and her team did very well working together and she brought home a gold and a silver medal.

As we talked about her experiences I noticed something I hadn't seen in her in a while. She was glowing with happiness. Not just because of her accomplishments, but because of her experiences. She made close, lifelong friends in only a matter of five days. She saw first hand how much not only organ recipients, but also organ donors care about donation. She saw celebrities such as Scott MacIntyre support something that means so much to so many people.

She learned many things over these days about the process of organ donation and why it is important to be a donor. We had the talk that I always knew we would have...the same talk the main character Olivia has with her nurse in Angel Donor: "Why did my donor have to die so I could live?" Before I knew it we were discussing brain death and how the transplant team and surgeons care for donated organs.

She also saw examples and heard many stories of how donor families met with recipients. These events inspired her to write a note of thanks to her donor family. Although the family is anonymous to us right now, we can still send a letter of thanks through the Gift of Life foundation who will deliver the letter to protect the donor family's privacy. Somehow life had come full circle. Just 8 years ago I had written a letter of thanks as a parent for the gift of life. Now, Jackie is writing her own letter of thanks.

Over the hours that Jackie has been home, I have also observed the new people in her life. As mentioned before, she has formed friendships that will probably last forever. The friends she made during the games are people who have been through similar situations and are dealing with similar emotions: happiness, survivor's guilt, gratitude and sadness. It is quite a mix, but as I am seeing now, it is what real friendship bonds are made of.  She has already connected with the kids via her social networks, phone and e-mail.

Though the event only lasted five days, it caused a wonderful transformation. My daughter grew up a little bit, but it also helped her understand more about herself and what she has been through. Most importantly though, she learned that she is not alone. As she told me just this evening, "It's like living in another dimension where everyone gets you...right away. They just get you."

And so, now that these games are over, we look ahead to next time in two years. I have made a personal vow to myself during these days. I plan to train myself for a marathon via the Cto5K so that we can do the games together. I've got two years to train, but have the best motivation in the world.

The Transplant Games: More Than Just Sports

As I write, Houston is in the middle of hosting the 2014 Transplant Games of America. This exciting event runs from July 11-July 15, 2014. The games is a "multi-sport event for individuals who have undergone life-saving transplant surgeries." It is open to both organ recipients and living donors. It is not just a sporting event, but also an event to help raise awareness of the importance and need of organ donation.

This is an exciting event for many participants because, like how we worried about my daughter, family members often wonder if that life-saving surgery will ever happen. You try hard not to lose hope, but as the days tick away and your family member gets more sick, you begin to get more worried. Many do get the surgery they need, but too many do not.Just this year a special friend in my community lost his life waiting for a much needed organ.  For those who are lucky enough to receive an organ, it is miraculous to participate in an event such as the Transplant Games. For my daughter, she missed many normal "kid events" when she was sick. A doctor once shook his head as he was giving her an IV and said, "These kids should be out on the playground. Not in here." And now, thanks to my daughter's donor, she is participating in the biggest playground event in her life. This is what organ donation does.

The games happen every two years, and this is the first for my daughter. We don't know who her donor was due to privacy concerns, but nevertheless, she is running in that person's honor. For if that person's family never made the decision to donate, my daughter may not be here either. As she runs, so does part of her donor.

If you are in the Houston area and are looking for something to do, try checking out this event and go support the athletes and their cause. You will be glad you did. Good luck and have fun to everyone participating this year. Enjoy the events. Enjoy Life. Spread the word.

Our Day at the Dash

On April 13, 2014 My daughters and I participated in our first Dash for Organ and Tissue Donation Awareness. It was a historical day, as there was a record 12,000 people participating that day. I was in awe when I heard that statement. Twelve THOUSAND supporters of the life saving act of organ and tissue donation.

We had a great time supporting the cause. When we first got there, we got our DASH T shirts. It was official. Now, if you know me at all, you know that whenever I do something new, I innocently, yet often, do something silly. I don't try to do these things (Maybe it's the writer in me creating drama...who knows) but they often happen when I'm involved. The day of  The Dash was no different.

The girls and I began to look for our team. We asked the sign tent if our team had picked up the sign yet. They said no and tried to give us the sign, but I knew the team would be looking for it. An hour or so passes by and we did not see anyone from our team. (Meanwhile, they were assembling at the Team Tables, which I neglected to notice). Finally, I asked again if our team had picked up our sign. They said, "No" and asked again if we wanted the sign. We were beginning to think we were the only members of our team present, so we decided to pick up our sign.

After waiting and waiting, we decided to look around to see if our team was anywhere. We finally found them and they were wondering what happened to the sign. A little crazy, but all ended well.

Later, the girls had a chance to do some fun activities, including participating in the radio's "Kid Cast". 

This is were kids read from a script and broadcast the weather and sports clips. It was tons of fun and an experience they won't forget!

Finally, the big moment came. We were ready for our 3K walk! We met up with the rest of our team, sign in hand, and walked for our cause! The crowd broke into cheers as we took our first steps. And we broke into cheers as we crossed the finish line! 

 Seeing teams and teams of people gathering together to dash for their loved ones touched my heart. There were dashers for people who needed a transplant. There were dashers who were families of donors. There were dashers who just cared about the cause. Every one had a reason to dash. Everyone had a story. This was truly an inspiring day and turned us into regular "Dashers".Next time I promise: I will not steal the sign.  

The Dash for Organ and Tissue Donation Awareness in Philadelphia

I've been waiting for this moment:  the moment my daughter who had a liver transplant was old enough and interested in joining the Dash for Organ and Tissue Donation. "The Dash" as Team Philadelphia calls it, is a 10K and 5 K run or a 3K walk to promote organ and tissue donation. It's also a "celebration of the success of transplantation".  Every year teams get together and participate in the dash. To get a feel for the event, please visit the above link which hosts pictures and a video of last year's event.

I was never sure when my daughter would be ready to do this. She started participating in Track and Field a few years ago. However, sometimes long walks can wear her out. So when she told me she wanted to join  "the Dash," I was skeptical at first. She was determined to let me know that this is important to her. She didn't say it out loud, but I got a sense she was telling me, "Hey, Mom. I can do this. I WANT to do this."

And so our journey begins. We will be there celebrating with Team DuPont in less than a month.

The Big Diagnosis

Being diagnosed or having a child diagnosed with a liver disease, as with other diseases, is a traumatic experience. There were many things I learned, as did the main character of my book on Biliary Atresia (Angel Donor) at the onset of my child's liver disease. After battling the emotions that go along with something so scary, I found some things to be helpful. Here are some tips I came up with during our ongoing battle with, liver disease and transplantation:

• Stay Calm - take a deep breath and remember to care for yourself and your child. Remember, you can't help your child if you aren't yourself. He/she needs you.
• Find Support-While it is important to remain clam, finding support for yourself is equally important.Joining a group with others going through similar issues will help empower you and help you learn more. Remember, however, never substitute this information for your doctor's information. The doctor knows your child and his her condition. 
• Don't Forget Date Night-Many times marriages suffer when a close family member is ill. Be sure to keep those dates with your spouse. Single Parent? It is still important to get out. Make plans with friends or siblings and have a good time. Taking time for yourself makes you a better parent to your child.
• Trust Your Doctor- Be sure you follow your doctor's advice. They have seen many things, medically, and they are working with you to help your child. That said, don't be afraid to ask questions if you don't understand something, or speak up when you feel something is wrong. Your input it crucial!
• Write About It- Use a journal or an online journal to record your experiences during this time. Record the ups and downs and how you got through them. Online journals,like Caringbridge also allows you to share updates with families and friends, which is useful for those late night E.R. visits and everyone wants to know what's going on.

Below is an inspirational image I created. Please share it as Olivia and I hope to help as many families as we can.

Memory

This weekend I found out a dear friend in our church community died. He was waiting for a heart transplant, but did not get his heart in time. The shortage of organs is very real and the effect of that shortage can hit anywhere or anyone. 

Who was this person? He was a father, grandfather, friend, family, parishioner, a leader, an umpire, and a CTK softball General Manager. When he umped games, he taught children about the game. He was brave enough to get behind the batters in the batting cage-catchers learning their position often missed catching the ball and the balls hit his ankles instead. He will always be remembered for all he did and who he was. 

MEMORY

He loved the young kids,

It showed on his face,

He smiled through games,

He taught kids with grace.

He gave kids a sport,

Everyone could go play,

"Have fun! Play Nice!"

And all'd be okay.

He taught and he umped,

For me and for you.

All so our kids

Had a fun thing to do.

"Softball" and "Quinn"

Were names all as one.

No one could top

Everything he'd done.

Where ever you'd go,

Where ever you'd stay,

You'd hear the name Quinn

And think "C.T.K."

So off now to Heaven,

Our dear John Quinn,

May that ballfield be greater

Than the one you began in.

--With much love,

Jennifer Gladen and Family 

Angel Donor Comes in First

My third children's book, Angel Donor, just won the 2012 Preditors and Editors Best Children's Book Award. See the official list here. Out of 39 children's novels and picture books, Angel Donor came in first place. 

But Angel Donor wasn't the only Guardian Angel Publishing (GAP) book to place in the top 10:

Guardian Angel Bookstore - 10th place

Angels Do That - by Tracy Cox  5th place

The Wishing Well, Another Weaver Tale by Kai Strand  9th place

And Ava's Secret Tea Party by Donna Shepherd came in 17th place.

CONGRATS TO ALL WINNERS!!

Angel Donor is a children's book about one little girl's journey toward a liver transplant. I wrote the book to help raise awareness about organ donation, but mostly to help children going through that process deal with what is happening with them. I wanted a book with which these brave children could identify.

I must say, Angel Donor's supporters really came through. As a way to celebrate I'm holding a drawing for a free autographed copy of the book. 

If you joined the event Vote For Angel Donor on Facebook and you "Like" Angel Donor on Facebook, you will automatically be entered to win. You can earn extra entries by "Liking" my author page on Facebook,and by following this blog too.  Just post a comment here or on Vote for Angel Donor that you liked my page(s) and or followed my blog. After I verify the info, I'll add your name and extra entries to the drawing. Winner will be announced Friday January 25th here on my blog and on my pages.  Thank you all for your support! 

Tabitha's Wish

Today I have a special treat for you. The other night I spoke with Mr. Duncan McLindon of Tabitha's Wish. Tabitha's Wish is a special community page on Facebook. But it's not just any community page. It's a page aimed to make a difference.

Tabitha's Wish

When I asked Duncan, Tabitha's father, what Tabitha's Wish was, he told me a very touching story. Tabitha wanted to open a checking account at the small age of twelve. In order to do that, she had to have an ID card. So, her mother took her to the Department of Motor Vehicles and helped her get a non driving ID. A routine part of the process was for the clerk to ask if the person getting the ID wanted to be an organ donor and have that on their card. Without hesitation, Tabitha said yes. Only one thing confused her. She heard someone next to her say no. On her way home, she asked her mother why the man said no.

We don't really know why the man said no, but it could be due to the myths and rumors often spread about organ donation. 

If everyone who is eligible to donate their organs donates, there would not be a list."

~~Duncan McLindon 

Just one week later, Tabitha was rushed to the hospital. One minute she was enjoying a skating party with her friends, the next she was fighting for her life. After diagnosing her with a rare brain bleed, her doctors did everything they could to care for her. Finally, they told the family that there was nothing else they could do to save her and within days she passed away. Since Tabitha had never been  seriously sick before, she was eligible to be an organ donor. When Tabitha's family was asked if Tabitha could donate her organs, the family knew, without hesitation, what Tabitha's wish was. There was no question. Tabitha's wish was to be an organ donor. And her wish saved the lives of seven people. Tabitha's Wish is all about getting Tabitha's story out there, spreading the word about organ donation and helping tell the story of organ donation from the donor's side.  To read more about her story, please visit and like the page: Tabitha's Wish

Remembering Tabitha

Tabitha's father Duncan told me with enthusiasm when I asked who Tabitha was. What were her likes an dislikes? One thing I learned was she loved horses and was great with them. She was a "natural rider."

"She won her first Saddle at 5 years old," Duncan said with pride. She was a child who loved to learn, but also loved Taylor Swift's music. She got good grades and was on the honor roll. She even won a music award in her short life.

Almost 1 year to the day of Tabitha's death, Duncan McLindon started Tabitha's Wish to spread the word about the importance of organ donation and talking to your family members about your decision. He began doing radio and television interviews.Now, Tabitha's Wish on Facebook has over 11,000 followers. Not only is Tabitha living on through the seven people her organs went to, but now thousands of people know about this heroic child. 

The Interview

During the interview with Duncan, I got to ask some questions and learn all about this family and his sincere love of his precious daughter. After talking about this heartwarming story, I had some other questions for Duncan.

Me: What would you say to some who says they don't want to be a donor because they are afraid their own doctors won't take good care of them in order to harvest organs?

Duncan McLindon: A doctor is sworn to do everything to save the life of their patient. Also very few people who die are eligible to donate organs. If you are in an accident and are fatally wounded, the EMTs will work to save you no matter what. They are not part of the Transplant Team.  Also, if you die while the EMTs are working on you, and you have Organ Donor on your ID, the EMTS will continue their life saving efforts (because the organs need the oxygen). With this happening, there's even a small chance of a miracle on the way to the hospital. However, if you are not an organ donor, all life saving efforts stop as soon as death is declared. 

Me: Have you ever been allowed to communicate with any of the families Tabitha helped? As a parent of a child who received a liver, I think about her donor every day. I owe her donor everything. Since we haven't been blessed with thanking them personally, we often pray for the family and the donor.

Duncan M: I've met the little girl who received Tabitha's liver. (Editor's note: See Tabitha's Wish for more stories and pictures of these meetings.)

There is also a story about the person who received Tabitha's lungs.When I asked her what she wanted to do after she got a transplant, she said, "I think I'll dance." 

Me: Why do you think it is important to spread the word about Organ Donation? 

Duncan M: It is important to get the word out so potential donors won't miss the opportunity of saving a life out of grief. Often, when someone close to us passes, we are overwhelmed. And if we never have discussed organ donation, it is likely we will say no out of our grief. Also, once you decide to be an organ donor, it is important to let your family know your wish. Even if you have an Organ Donor card or it is on your ID, if your family says no, the doctors won't do it. Also, if everyone who is eligible to donate their organs donates, there would not be a list.

Me: What do you think Tabitha would say about the success of Tabitha's Wish?

Duncan M:  I think she'd say, "Thank you for making my wish come true."

A Time to Vote for Angel Donor

This year Angel Donor is participating in the Preditors and Editors Reader's Poll.

This is an Internet poll on books of all categories. It is designed to help authors gain exposure for their work and help readers discover the newest books out there. As taken from the Preditors and Editors (P&E) site, "As part of our overall effort to assist and promote writers, we are proud to present the annual Preditors and Editors Reader's Poll".  P&E is also well known for their vigilance in warning authors about publishing scams.

Here is more information on Angel Donor:

Olivia never asked to have a disease like Biliary Atresia. It made her liver sick and only a transplant will make her better. After waiting several months and close to losing hope, she gets the call she's been waiting for. The journey of her life is about to begin.

PLEASE VOTE FOR ANGEL DONOR TODAY in the CHILDREN'S CATEGORY:
http://www.critters.org/predpoll/novelchildrens.shtml

Feel free to add a  comment about Angel Donor. I have been humbled by some of the nice things put up there.  Enjoy, Happy Voting and HAPPY NEW YEAR!

A Photo Display of a Fun Time

It was two hours before it was time to head to the hospital. As we gathered our things that we'd need for the day, I recalled times in the past that a trip on the highway to the hospital was filled with fear and anxiety.

But not today. Not this time. Today was a celebration. It was the annual Holiday Party at the children's hospital where my daughter received her liver transplant. It is a day filled with fun, food, dancing, socializing with the medical team and meeting Santa. It is something my family looks forward to every year. This time it meant a little more to me. As we prepared to leave, I put together a gift bag.Waiting inside the bag, was something I've been working on for years. It was a signed copy of Angel Donor for my daughter's Transplant Team.  

Once at the party, the fun and games began.Instead of medical exams, the children arrived to create their own Santa Hats.  Using foam letters, the kids attached their names to their own Santa hats.

A favorite for my 2 younger ones was the face painting!

There was lots to celebrate. Many children are enjoying a second chance at life. Some are enjoying an oasis away from the chaos of disease. All are enjoying fun family time! 

  

All the kids there looked like they didn't have a care in the world. The kids made new friends, the parents made new friends and a good time was had by all. There was even time for family photos with Santa.

If you are a family who has been struck with a serious childhood disease, what are some ways you and your medical teams have celebrated? With the endless stress during the year, I'd love to hear your happy stories! 

Common Myths About Organ Donation

While there are some extraordinary and uncommon experiences out there, the truth is organ donation is a life saving option when the unthinkable happens. According to facts from the Donate Life Pa website, while about 85% of Pennsylvanians support organ donation, only about 45% are registered. Why? After viewing different conversations on social networking sites, I think alot has to do with myths about organ donation.

#1 -  One of the biggest myths and ethical concerns I see is that people are afraid their lives won't be saved by their own doctors if they are registered organ donors or if they agree to donate their organs. 

Fact : The  medical staff whose job it is to save your life is compeltely separate from the transplant teams. It is not until after death is declared that organ donation is considered and a transplant team is notified of an available organ.

#2 - It is unethical to donate an organ.
Fact: Organ Donation is an acceptable process for most religions. Here is a list of major religions and their position on organ donation found at Donate Life PA's website.

#3 - My organ is going to someone who did not take care of themselves.

Fact: - Most transplant candidates are on the transplant list due to severe diseases through no fault of the patient. In the low instances of drug abuse or alcoholism, the patient must be sober for at least five months before even being added to the transplant list.

There are several other myths about organ donation. Please take a look at Gife of Life Donor Program.

All About Biliary Atresia

In my newest children's book made especially for other children living with liver disease and transplantation, the main character, Olivia, has a liver disease called Biliary Atresia, which caused her to need a liver transplant. In today's post I will discuss just what this disease is, how it is treated and what to look for. 

What is Biliary Atresia?

Biliary Atresia is a very rare liver disease where the bile ducts from the liver are blocked. It is estimated that one in every 10,000- 20,000 live births are born with the disease. In addition to the large bile ducts being blocked, the disease begins to spread to smaller bile ducts. This means bile can't drain from the liver properly. If left untreated, the liver becomes scarred and loses it's function. Treatment is needed as soon as possible. After testing to be sure the disease is in fact Biliary Atresia, a surgery called the Kasai procedure is done in order to regain bile flow. This allows bile to flow, however it can't reverse the scarring of the liver. Often times a liver transplant is needed down the line. 

What are the symptoms of Biliary Atresia?

• Yellowing of the baby's skin
• Yellow eye whites
• Dark Urine
• Pale, white or clay colored stools.

If a child is diagnosed with the disease, there are many places to get support. 

• My first suggestion is to READ, READ, READ. This is the reason I wrote Angel Donor. It is for our brave kids battling this disease. Parents and caregivers, be sure to read about the disease. There are many articles out there. Ask your child's doctors for their favorite resources and books about the disease. 
• Get support online or in person. Ask the hospitals if there are support groups, other parents who are going through this, etc. My two favorite places for online support (which I've also listed in the back of Angel Donor) are: http://www.classkids.org  and http://www.liverfamilies.net. The parents and administrators there are full of information and support. It's great to talk with people who know exactly what you are going through.
• If you feel the need, you can set up a secure, special web page to share updates with the family. The last thing you will be thinking of during a hospital stay is calling all the family members and repeating the update on your little one a hundred times. Once you get a private moment to yourself, you can update the page and everyone will be in the loop. One great website is http://www.caringbridge.org . It is secure, so only people you give the direct link to can access the page.  

If you have found this post in your search for answers about this disease, I hope that I have helped you some. Feel free to comment here anytime. I would love to help in anyway I can.