Transplant

Every month, we here at The Band choose to highlight a specific word or condition that we want to throw into the spotlight and talk about. For April, we've chosen to spotlight the word - and the act - "donation." What do you donate? Are you a transplant parent? Do you have a transplant story for us? Have you donated blood, organ, or tissues? What about time? Or items for charity?

We want to know what you've donated in your life.

It's time to band back together for donation!

I have a really special uncle named Bill. He's one of those adults who doesn't treat kids like they're dumb or less than because they are young and short. I really appreciated that when I was a kid. 

He encouraged my musical side when I started playing the clarinet by introducing me to classical pieces with great clarinet parts. 

When we visited Arizona in the summer, my extended family would often go to Sedona for the day. I always loved riding in Uncle Bill's car because he would blast specially-picked music from the stereo and take the drive down the switchbacks nice and fast. 

I was pretty small when I first heard the words kidney disease whispered by my parents. I didn't understand what that meant. I noticed changes in him during our once-a-year visits. Eventually there was talk of dialysis and transplant lists. 

When he first started on dialysis, I remember he and his wife discussing that there are dialysis centers all over the world, and maybe they would spend time traveling from clinic to clinic. I don't know that it was a very realistic idea, especially as he got to the point of needing multiple treatments each week - they didn't do very much traveling.  

My husband and I had our second wedding in Arizona with my family, and Uncle Bill walked me down the aisle. It is one of my most special memories from that wedding. 

In 2003, when I was in the hospital on the day my daughter was born, I got the phone call from my mom - Uncle Bill was going in for transplant surgery. 

I am sorry that there is a family out there who lost a son, but so thankful that in the midst of their loss, they chose to sign the paperwork and donate his organs, giving my uncle the precious gift of a new kidney. 

Each year on my daughter's birthday I pause for a moment and say a prayer of peace for that family.

And I say a prayer of thankfulness for my uncle, who is, by the way, one of my daughter's favorite uncles, too.  

Every month, we here at The Band choose to highlight a specific word or condition that we want to throw into the spotlight and talk about. For April, we've chosen to spotlight the word - and the act - "donation." What do you donate? Are you a transplant parent? Do you have a transplant story for us? Have you donated blood, organ, or tissues? What about time? Or items for charity?

We want to know what you've donated in your life.

It's time to band back together for donation!

I've been told that if you pray for patience, God may put something in your life that tests your patience. 

Oh, He definitely has.

My daughter was born with Maple Syrup Urine Disease, a rare, potentially fatal, metabolic disorder. Currently, the only cure for Maple Syrup Urine Disease is a liver transplant.  

After she hit puberty, we realized that she would be going into metabolic crisis every month for the next forty or so years, we decided to pursue the transplant.

That was over two years ago.  

We honestly did not anticipate our wait being this long. During this waiting period, our lives are in limbo, and my daughter is - understandably - frustrated.  

I cannot stress enough the importance of registering to be an organ donor. With more donors, more organs would be available, and the waiting list would be that much shorter. More lives would be saved.

And fewer people would be praying for patience.

Every month, we here at The Band choose to highlight a specific word or condition that we want to throw into the spotlight and talk about. For April, we've chosen to spotlight the word - and the act - "donation." What do you donate? Are you a transplant parent? Do you have a transplant story for us? Have you donated blood, organ, or tissues? What about time? Or items for charity?

We want to know what you've donated in your life.

It's time to band back together for donation!

Right now, as I write this one family is grieving and another is hesitantly relieved.

Right now, as I write this, one family is forever saying good-bye to their child and another family is sending their child off to surgery.

Right now as I write this post, a very sick little girl has had her wait for a liver of 223 days come to an end.

Right now, that sick little girl is getting a new chance at life because another life ended.

Right now, in this moment, my daughter's ten-year old "liver buddy" (it’s what we liver/transplant parents call each other) is getting her "gift."  

The gift of her life.

Today, someone said yes to allow their child's organs to go to another child.

And so, right now, a miracle is occurring.

(PS - this really is happening right now as I write this. This is April the National Organ Donor awareness month, and the month that The Band has chosen to spotlight Donations! How cool is that?)

Every month, we here at The Band choose to highlight a specific word or condition that we want to throw into the spotlight and talk about. For April, we've chosen to spotlight the word - and the act - "donation." What do you donate? Are you a transplant parent? Do you have a transplant story for us? Have you donated blood, organ, or tissues? What about time? Or items for charity?

We want to know what you've donated in your life.

It's time to Band Back Together for donation!

I remember the day like it was yesterday.

The doctors at Seattle Children’s Hospital came in, closed the blinds in our son’s hospital room, and quietly shut the door. I knew then there was a pretty good chance that what they were about to tell me was something I wasn’t ready to hear. My mind raced as my heart sank – my husband was half-way across the state.

Silently, I began to panic.

Thankfully, I had become close to a few of the resident doctors - our favorite was the one that delivered the news. Tyler had relapsed. TYLER HAD RELAPSED.

What? What does that mean? What now? What do we do? How do I breathe? What is next? Who is going to save my child? I spiraled. 

I was told that Tyler’s case was going to be discussed at the “round table” with the best childhood oncology specialists in the US. These specialists would establish a treatment plan. 

The treatment plan included a second bone marrow transplant from an entirely different donor. We, as his family, were not a match. In some ways, that broke my heart, but looking back, it was truly okay. If indeed, one of us had been a match, the outcome would have been more devastating.

I quickly learned that Tyler had 79 potential marrow donors – further testing would be performed on a select few of these individuals. After a few days, the Transplant Team gave us the good news - there was a GREAT match, so we were proceeding to transplant.

We celebrated!

The night of the transplant, the marrow was delivered, and we were SO excited to see this new lease on life infused into our son. We had a transplant party in Tyler’s hospital room. I can still see Tyler sitting there wondering what the adults were whooping and hollering about – I'm pretty sure he thought we were nuts.

Fast-forward a year post-second bone marrow transplant.

See, one year post-transplant, the donor and the family may set up some time to talk or meet. Our social worker set up a time for Tyler’s donor to call us.

I remember it well. I was sitting at the kitchen table waiting for the phone to ring. The call came in, and my heart sank when he asked after Tyler - you could hear the eagerness in his voice.

Sadly, he didn’t know that Tyler passed away. A man, a donor - OUR HERO (Dave is his name) - had no idea that Tyler died, and the phone call devastated him. I consoled him as he apologized over and over for not being what Tyler needed.

I expressed that Dave was OUR hero. He gave Tyler a gift that we could not. Tyler didn’t pass away from a problem with the donated bone marrow. I hope he knows just how much his sacrifice meant to our family.

We are forever grateful.

You – yes, YOU - could be the match!

Would you make that sacrifice? Could you - YES YOU! - help save the life of a child or an adult? Did you know that you, YES YOU - can save a life with the gift of bone marrow. The test isn't invasive - it involves a cheek swab. It’s that simple.

Make a difference in the world.

Be The Match.

When Jana and Crys pinned me down and insisted that we dedicate April (which is, randomly enough, the month for EVERYTHING from child abuse awareness, sexual abuse survivors, Autism, and National Frog Month) to donations, I was skeptical. I figured it would be all *crickets* when I begged you, The Band, for your donation stories.

I mean, not everyone is walking around with one kidney and half a liver...right?

Turns out, Jana and Crys were spot on. While not everyone is, in fact, walking around without all their organs, there is a lot more to donation than simply organ, blood, bone marrow, and tissue donations.

I hadn't even considered that I, in fact, have not one but TWO stories (in one!) for our donation carnival.

Thanks, J and Crys for proving me wrong. AGAIN. I deserved it.

---------

"Becky," my husband said softly, yet urgently, trying not to allow the panic to creep into his voice.

I rolled over, my sheets still wet from the nightmares he'd awoken me from. I was waking to the nightmare my life had become.

He was holding our daughter, my precious new baby, a look of horror on his face.

"We need to take her to the lab over by the mall," he informed me. "The doctor just called."

"Why?" I groggily asked, the gorge rising in my throat.

"We need to get her blood-typed and cross-matched," he told me sadly.

"Didn't they do that at the hospital in the NICU?" I asked, hoping to avoid the amount of blood they'd be taking from my nearly eight pound newborn. I couldn't stand the idea of her being poked...again.

"I don't know," he answered honestly. "The neurosurgeon ordered it for the..." he trailed off. "You know."

I did know.

In a few short days, I would be sacrificing my two week old daughter to the OR table. I wasn't sure if she'd live or die. There are no sure-things when it comes to neurosurgery for a newborn.

I began to weep, which hurt my already raw face, "I can't...Dave, I can't go."

I began to sob into my pillow.

"It's okay," he said, buoying me with false happiness. "We can go. We'll be FINE."

I sobbed harder. What a fucking coward I was. I couldn't even take my poor daughter to get her blood drawn. What kind of mother was I?

The kind, I don't hesitate to answer, who was nearing a nervous breakdown, who was about to put her daughter into the hands of a surgeon to fix her birth defect - her very RARE birth defect - an encephalocele.

Do me a favor, The Band, and don't Google it (you don't want to see pictures). Or, if you must, let me tell you that to be born alive with an encephalocele is a rarity. To be born alive and seemingly neurologically intact is even more rare. There are no statistics for success in Amelia's age bracket for cranioplasty and skull repair. There are no organized marches for encephalocele cures, no encephalocele foundations - it's rare and it's bad. It's FUCKING bad.

And being a trained nurse, well, that made matters worse. I knew what the condition was before she was officially diagnosed.

I knew she would be going under the knife, that piece of brain matter hanging jauntily out of the back of her head snipped away. An implant would be put in to fuse the back of her skull together - as it should've been already - to prevent possible re-herniation of skull, brain tissue, and meninges.

I'd have given my own skull for the chance to take her place on the OR table.

The day of the surgery dawned far too soon. I was almost serene that morning, resigned to the fate we had ahead of us.

A surgery that was projected to take six to eight hours was over in less than one. Ebulliently, we listened to the neurosurgeon who, for the first time since I'd grimly met him, smiled. He told us that the surgery was a success and we'd soon see our girl, who was in the SICU awaiting transport to the PICU.

In a bizarre twist of fate, the award-winning children's hospital I worked at when I was a practicing RN, BSN, had opened a satellite unit near our house. My daughter's gown bore that very same logo I'd seen on so many other children.

He finished with, "We did need to transfuse two pints of blood into her. She lost a bit of blood during surgery."

I've never been able to find the person who did that - the person who selflessly gave my daughter life. Who had, out of the goodness of his or her own heart, helped save my girl.

And I've never forgotten that the blood that once flowed through her veins, helping her heal from neurosurgery, helping her learn to skip, jump, wiggle and run, as she laughs and plays, was truly the gift of life.

So to you, each of you who has donated blood; who has donated time; who has donated an organ or signed up to be a bone marrow donor...

I want to thank you from the bottom of my girl's heart.

That same little girl sparked an idea that lead to this. And in her short life, Amelia has already touched the lives of so many.

Without her...without her, you (YES, YOU!) would not be reading these words because they'd have remained unwritten. You, The Band, would never have heard of a group weblog called Band Back Together because it would never have been created.

I'd never have told you that we are none of us alone, we are all connected, because, well, I wouldn't have known that. You may have known me, Aunt Becky, from my blog Mommy Wants Vodka, but without Amelia, well...

Let's not go there.

So I wanted to end my story about donation with a thank you to each of you who works with us, here on The Band, tirelessly donating your time to bring us more, better resources and help spread the word.

I want to thank each of you who has written for us, or who will write for us. Your words will touch someone, somewhere. And when they do, those words strung together into sentences and paragraphs, linked to resources, they will remind someone, somewhere that we are none of us alone.

We are all connected.