Pediatric 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!

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!

24.

That's the number of people that have saved my little girl's life.

24 - that's the number of blood transfusions that she has had.

24 people took the time to donate blood. 24 heroes.

After my daughter's liver transplant, she developed PTLD [Post-transplant Lymphoproliferative Disease] which is a fancy name for a form of lymphoma that affects certain transplant kids.

From the PTLD, she developed Hemolytic Anemia - this meant that her body was attacking its own red blood cells. Her hemoglobin would plummet, and back to the hospital we'd go for another transfusion. We did this 24 times.

24 times.

I have no way to thank these strangers for saving my girl. How can you thank someone for giving the gift of life? Nothing seems adequate. Nothing seems to be quite enough.

I registered to donate my bone marrow as a means of compensation. To one day donate my bone marrow, to pay it back.

If you have ever been a donor, thank you. Thank you from the bottom of the heart of a Mom who can never, ever repay you.

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!

(Be sure to tune in on April 22 for our Donation Carnival of posts!)

What am I, chopped liver?

Yes, actually, I am.

7 years ago, I had a choice. I could continue to watch my 17-month old baby girl die, or I could give her part of my liver. Not much of a choice, really.

“Sure Doc, put me under, cut me open, break a rib or two, and give my kiddo part of my liver. I’ve had a good 27.5 years on this planet.” That’s kind of where my head was - I was ready to die for her.

My husband wasn’t a match for organ donation. His blood type was all wrong. It crushed him. I know that he wanted to be the one to donate his liver for her. He wanted to spare me the agony, the pain I would face. He’s always been the knight-in-shining armor type.

My brother wasn’t a match, either. He was only 18, but he, too, wanted to be the one to save her. He wanted to so badly, but the transplant doctors found an arterial anomaly or some such thing. My sisters both wanted to donate, too, but Andrea* had just had a baby and Michelle was in Iraq.

And then there was one.

Me.

Even at her sickest, my daughter only scored a PELD (or, Pediatric End-Stage Liver Disease score, which scores the severity of pediatric liver disease.) of 11.

Transplant scoring is a complicated, complex process designed to ensure fairness among organ donation, but it still sucks.

There she was, her PELD of 11, over 86,000 people waiting for a transplant. (Today, there are 113,620 very sick people waiting for a donor.) Some wait for a kidney, others lungs, or a heart. All wait for life.

They are all waiting for their life.

Before my daughter needed a new liver, the only person that I'd known that needed an organ transplant was Walter Payton, beloved Running Back of the Chicago Bears.

I cried the day he died.

He spent his final months as a transplant advocate. And that was about as much as I knew about organ transplants.

Before my daughter was born, I thought the only people that needed a new liver drank their other one away. I came from a long line of alcoholics - it’s what I knew.

And I was wrong.

Our daughter was born with Biliary Atresia. No one knows what causes it. No one is sure why, for some babies, the biliary tracts in their livers spontaneously (usually at birth) shrivel up and quit.  

I tried to get pregnant for three years, so during my pregnancy I didn’t drink alcohol or pop, I ate right, I didn’t smoke. I did all the “right” things, and yet she still needed a new liver. I was seriously pissed for a very long time.

What was the transplant like?

My husband had it the worst. He darted back and forth between the two hospitals, worried about his beloved girls.

My pain was incredible - I've never experienced anything like it. I can’t tolerate pain medication, and I released myself after 48 hours in the hospital. I imagine if I'd taken pain medication, the pain would have been more manageable, but I was concentrating on my child’s care.

My daughter had her share of complications after the transplant, but seven years later you wouldn’t know it. You'd not guess that her face is the face of a child that was once given a week to live. You'd never guess she'd been placed at “Status 1” (transplant speak for less than a week to live).

So why did I donate? There is a serious deficiency of Organ Donors  in the world. It’s hard for people to give up the organs of their loved ones.

I get that.  

I understand the fight; the desire to save the life of a loved one. I don’t know the pain of losing one - it's a pain I refuse to imagine. That's why I would donate again - in a heartbeat. 

*Names changed to protect privacy.

My youngest son was born with a condition called hydronephrosis. Hydronephrosis means that his urine was flowing from his bladder back up into his kidneys, causing kidney damage. In addition, one of his kidneys was smaller than the other.  

The original surgery to repair his 'plumbing problem' was perfomed just before his first birthday. Unfortunately, we had an unexpected complication - his bladder decided not to work for the eight months following. This resulted in a week-long hospitalization as he was in acute renal failure.

We've been through a long, hard year handling his urological issues: two major surgeries, acute renal failure, straight catheterization at least five times a day, four months with nephrostomy tubes [nephrostomy tubes are tubes that are surgically placed in his back - placed in his kidneys and hooked to drainage tubes and catheter bags], before we finally thought he was on the road to good health.

Then, we noticed his left arm looked swollen - but not his right. We were referred him to a hematologist who believed he had "hemihypertrophy," a diagnosis that was confirmed by the geneticist we met with in September.

Hemihypertrophy is a genetic abnormality that causes parts of his body to grow more rapidly (or larger) than others. The hemihypertrophy diagnosis neatly explains his leg length difference [and the resulting scoliosis], and the size differences of his kidneys and arms.

A diagnosis of hemihypertrophy predisposes him to a few types of pediatric cancers. These pediatric cancers include adrenal cancer, kidney cancer - specifically Wilms tumors - and liver cancer. We'd been juggling doctors, health concerns, and appointments for some time; we thought we were nearing the end.

During a follow-up ultrasound of Jacob's kidneys, our urologist saw something suspicious.

An MRI confirmed that Jacob has cancer - a tumor in each kidney. Because both kidneys are involved, his cancer is considered Stage V even though each individual kidney tumor is only Stage I.

Jacob will require blood draws every three months to look for alpha-feta-protein markers that would indicate liver cancer. He also needs abdominal ultrasounds, MRI's and chest x-rays to look for tumors "at least until adolescence." This also means that WHEN we get through this round of cancer war, he's susceptible to recurrence.

---------------

Jacob's MRI confirmed that masses on his kidneys are, indeed, cancerous. It is believed that these are Wilms Tumors, but that can not be confirmed until they are surgically removed and examined microscopically.

At that point, we will know the stage of the tumors and whether or not they are "favorable" or "unfavorable" tumors. Because he has synchronous bilateral Wilms tumors, he is said to have Stage V Cancer. Each side will be staged after post-surgery. A pre-surgical biopsy is unlikely to be performed as the risks of cancerous cells spilling into bloodstream and spreading is too great.

The rough plan of action is a CAT-Scan, chest x-ray, and blood-work. Then we will meet with our cancer care team to solidify the course of action.

We're hoping to get a firmer handle on his dietary issues and food allergies prior to starting chemotherapy. We'll be meeting with a pediatric allergist for help dealing with Jacob's multiple food allergies, as well as meeting with a Pediatric G/I to have him scoped for EE - eosinophilic esophagitis.

(It was confirmed that he DOES have eosinophilic esophagitis)

The cancer treatment plan will include a 6-week course of chemotherapy, followed by surgery. The normal course of care is to remove the cancerous kidney.

With both kidneys involved, the doctors want to preserve as much of the kidney as possible. If he loses both kidneys, that elevates us to a whole different realm of issues. Post-surgery he will have another 12-week course of chemotherapy - contingent upon examination of the removed tumors and lymph nodes.

From the statistics I've read, Jacob has "8 in a million" odds for having all these conditions. Wilms Tumor, his cancer, has a high rate of successful treatment which is encouraging; however, since most of the treatments involve removing the cancerous kidney, I don't know how the odds will play out in Jacob's case, especially adding hemihypertrophy to the mix.

-------

Jacob had surgery to remove the tumor from his left kidney just after Thanksgiving. The tumor on top of right kidney resolved itself; however, a new mass was noted inside that kidney. This tumor has shrunk from .8mm to .6 mms. They will not be addressing this with surgery unless it grows or solidifies - it's more cyst-like in appearance.

March is our last chemotherapy appointment. Follow-up MRI and scans will be done at the end of March.

Assuming everything looks okay, we wait 3 months and repeat.

To look at my son, you wouldn't think anything was wrong.

------------

Every three months - with his repeat scans - I know I'll be scared. I wish I could be happy about ending this cancer treatment, but I can't - I'm convinced it's simply a matter of time before he has a recurrence.

It's ironic that all of the complications from his first surgery saved his life. We wouldn't have caught these tumors so quickly if we hadn't been monitoring him so closely. I am thankful Jacob has been so used to hospitals, doctors, and treatments that he's accepting of all that must be done.

I won't lie: this sucks.

It's totally surreal that my son has cancer. I weep when I remember that there's no end to his health problems in sight.  

Unfortunately, his kidneys are spotted with multiple "nephrogenic rests," any of which may turn into a tumor. Should we get to the point that he loses his kidneys, it's a whole new level of hell - renal dialysis and kidney transplant lists.

The constant stress from caring for a medically fragile child is taking a toll on me - even my dentist noted bone loss in my teeth from stress. I've been fighting a chest cold since Thanksgiving; my older son is fighting his second round of pneumonia.

There are so many mornings I don't even want to get out of bed. I battle depression, but I can't do anything about it. I don't get a day off - my boys need me. Hell, I can't even grab take-out for dinner thanks to their food allergies. Most nights, I put them to bed and I cry.

Despite all we've been through, I know things can be worse. I count the blessings I have - great doctors, a husband who works hard so I can stay home and care for my boys, and, most of all, two boys who are my greatest triumph.

In this month of love and hearts and all thinks pink and sparkly, as a part of our quest for Internet Domination, we want to know: What is Love? What do you Love? Have you felt Love?

Join us as we celebrate Love.

This is a really hard week for me.

PTSD loves to rear up and kick me in the behind this week. Actually the whole month of February causes fits of tears welling up in my eyes while I choke them down. During these fits, I remind myself to knock it off because I am incredibly lucky. We are one of the fortunate families. 

At the time she was listed for a liver in 2004, there were over 87,000 other people waiting for an organ transplant of some sort. Right now, according to United Network for Organ Sharing, there are 112,848. The stats are astounding. And it was those same stats that led me to my decision. If she were to continue living, with a PELD of 11, she was going to need a living donor. 

I was done watching her die. 

I was done feeling helpless. 

I was tired of feeling out of control.

Sure, I was scared.  But my love for her won out and my inner mama-bear* awoke from its hibernation.  (*We call her Nataliebear.)   

She is here.

She is alive.

She has made it through hell and back.

I didn’t give her part of my liver for the accolades.

I didn’t do it for the “atta girls.” 

I did it because I had no choice.

I did it for love.

And this month, February 2012, we will celebrate 7 more years with her.