Caleb is my oldest child. He broke me in both physically and emotionally into the job of motherhood. He was a healthy child, full of energy and adventure. From an early age, I recognized that he was compassionate and extremely curious about the world around him. Although at times frustrating, he could also match me wit for wit. This made me extremely proud as a mother. I was unable to pinpoint exactly how, but I knew that I must have somehow played a role in making him a remarkable human being.
When Caleb was ten years old, he was diagnosed with Primary Sclerosis Cholangitis (PSC) an autoimmune disease which can lead to liver failure. At the time, doctors explained that it was difficult to predict the progression of the disease. His liver could begin to fail anywhere between 2-30 years. I had prepared in my mind for this to happen in thirty years. That would give the world of medicine ample time to find a cure.
Although I had a very positive outlook about his condition, I also felt extreme guilt that I was the reason he was sick in the first place. Had I passed along a defective gene? Had he been sick for a long time and I hadn’t noticed? If I had noticed sooner, could I have changed the outcome? I re-thought every decision I made about his health up until this point. Maybe I hadn’t been feeding him the right diet. Was it one of the vaccines that I approved at his first year check-up? Perhaps the time that I didn’t take him to the doctor when he had a stuffy nose because I thought it was just seasonal allergies. Up until now, I thought that I had made all the right decisions as his mother. Now I doubted everything.
This past July, just six years after being diagnosed, Caleb was living a typical teenage summer. He was lean and muscular and tan from countless days spent swimming and biking. There were evening bonfires with friends and lazy days reading and sunbathing in the backyard. Then Caleb caught a cold. It was just a run-of-the-mill sore throat and stuffy nose, accompanied by a slight fever. His immune system did as it should and fought the cold, but it also fought his liver and triggered a rapid progression of his liver disease. Why now? Why this particular cold? He had many far worse in the years since his diagnosis.
We will never know.
Autoimmune diseases are like that. In just a few short weeks he would lose 20 pounds, his skin and eyes would yellow and his thoughts would become cloudy. He would lose his appetite and would pass up opportunities for end of summer adventures in order to sleep. A little more than a month after becoming sick, Caleb’s name was put on the National Organ Transplant list.
Early on a Saturday morning this past September, I received the call that we had been waiting for but not expecting. Caleb’s name had been on the list for just ten days. We were told that the average wait was twelve months and that 20% of patients die before receiving a transplant. I ignored the first call. We were still in bed. Who would call so early on a Saturday morning? When the phone began to ring for a second time, I reached for it prepared to chastise my mother for calling so early. I squinted at the caller ID and read “Pennsylvania”. That meant something. I breathed deeply and answered.
I don’t recall the details of the conversation with the transplant coordinator. I just responded a foggy “uh huh” to everything she said. A liver had become available. Caleb was second in line to receive it. If for some reason the primary recipient declined the offer, Caleb could then receive the liver and have transplant surgery within hours. We should have our bags packed and be ready just in case. If we got the call and it was a go, we would need to be at the hospital within 2-3 hours. The drive to the transplant center was a solid four with no stops. I hung up the phone and woke the rest of the family. I calmly told everyone not to get their hopes up. We could get many calls like this and we should go on with our day as planned. I began to pack.
I had been in auto pilot since I received the call, but as I packed mine and Caleb’s suitcase the reality of the situation began to sink in. The organ sharing process is anonymous, but the transplant coordinator had given me a standard bit of information that was weighing heavily on my heart and mind. The donor was a fifteen year old teenager that had committed suicide. The coordinator hadn’t told me whether it was a boy or girl, but I imagined a boy. My younger son Isaiah is fifteen. I imagined him.
A heavy, sinking feeling grew in me as I thought of the other mother. I imagined that Just a couple of hours ago while I was sleeping, she had discovered her lifeless son, desperately hoped and prayed for him to be saved, ultimately understood that hope was lost and then made the compassionate decision to give hope and life to somebody else.
How could she process so much in such a short span of time? How could she bare to make any decisions especially this one? How could she even breathe?
I thought of another mother- the mother of the primary candidate who was first in line for this particular liver. I was hoping both for and against her. I had to hope that the liver wouldn’t be a match for her child. But I hoped that it was. I tried to imagine a scenario where all of our children would be saved, but I couldn’t. One child was already lost, now who would be saved?
Sometimes I wonder whether this process would be easier if Caleb was younger. When he was little, I could pull him onto my lap and wrap him in my arms when he was scared and tell him that everything would be okay- that I would keep him safe. He would look into my eyes and he would believe me. Now, I tell him that everything will be okay, that he is strong and he will get through this. But he knows everything about his condition. He knows the statistics and he understands the best and worst case scenario. I can’t protect him from this very scary thing. I can only be by his side as he faces it.
When the transplant coordinator called back, her apologetic tone immediately told me that it wasn’t Caleb’s time. The primary candidate took the liver. In fact, they took half the liver. I knew that this meant that the primary candidate was a young child. The other half was offered to Caleb, but his surgeon had declined because it was too small. It too, was offered to a young child further down the list than Caleb.
One family was mourning the tragic loss of their teenage son or daughter and at least two families- probably more, were receiving calls that would bring hope and life. We just weren’t one of them.
I gave Caleb the news first. He was stoic as usual, but understandably disappointed. He has mentioned several times how he is anxious to have the transplant so that he can “start his life”. The tension that had been growing in the house all morning almost immediately subsided. Caleb went to a friends’ house, Isaiah started his homework, my husband made lunch for our three year old daughter (I had neglected her all morning) and I went upstairs to unpack.
I pulled Caleb’s pajamas out of the suitcase and began to cry. I had been the calm and rational one all morning, reminding everyone not to get their hopes up. It turned out that I may have been the most hopeful of all. Through all the reoccurring doubts and conflicting emotions, I had been secretly thinking, “this is it!” But it wasn’t. Not for Caleb. Not yet. I hope his call will come soon and I can watch him run and swim and grow strong again.
I share the hope of all mothers, to watch my child live.
Brandi, I remember you from years ago when your kids (and mine) were just babies. I was so moved by your story and your writing. You and your family will be in my thoughts and heart. You all are brave and wonderful. I’m betting on Caleb getting that transplant and living a long and rewarding life.
What a truly emotional and honest account of a very rough time. I would love to hear an update on you all–hopefully Caleb is doing well these days and you are too. My 18-yr old son became very sick this past summer and was diagnosed with advanced PSC. His bile ducts were already shot and we had no idea before this summer. He had an unofficial MELD score of 51. He was transplanted 3 days later and is doing wonderfully! He is in college and nearing his 6-month checkup. I can’t believe how horrible PSC can be, yet how many people are able to live with symptoms that are not only manageable, but also hidden. I blog and the link to my blog about Tyler and the hope that the transplant gave us is here: http://www.kidscowsandgrass.com/2014/09/team-tyler-represents-hope.html.
Bless your beautiful words and I hope you are both doing well.
Keeping you in my thoughts and prayers. I was diagnosed with PSC when I was 14 and transplanted at 29. Transplant is truly a gift, hoping Caleb receives this miraculous gift soon.
I found your story to be compelling and heartbreaking. I am a 19 year old student at the University of Vermont, I live in Burlington. Is it possible I could be tested to see if I would be a match? I would be more than willing and honestly, honored, if I could lend a helping hand. Please contact me if you read this.
My love and thoughts are with you.
Madi, you are a very sweet gal for offering to donate part of you liver to Caleb. I do not know the family or Caleb’s medical situation, but it is not usually the first choice to do a partial liver transplant. The disease PSC too often ruins the new partial liver. I’m not saying it doesn’t work, I’m just saying it usually isn’t the first choice. So I assume they are waiting for a deceased donation. This is the hardest thing to wish for…I have been through it with my son. I prayed that someone who was in the midst of unimaginable tragedy would want to create a legacy for their loved one by donating their organs. Deaths happen every day, but donations do not. It takes a special person to want to give life while they are mourning so deeply. So, in case Brandi does not see your post, bless your beautiful heart for your offer. Prayers were very important to me and I hope Brandi feels your love through your thoughts and prayers.
Brandi, if there is anything we can do, please let me know! I will keep your family in my prayers (which is several times a day, lately) and ask my friend who is a pastor to send out prayer requests to other pasters, who will, In turn, do the same….which means that essentially, people from all over the world will be lifting up prayers! (I won’t
include any names, unless you want me to.)Please take care of yourself, too. We love you.
Thank you for sharing your story and a bit of our strength. My thoughts are with Caleb and your family. I so sincerely hope that you get that call soon.
Thank you for sharing this. My thoughts are with you and Caleb, that your call will come soon.
Brandi, thank you for sharing. You are an amazing person, I wish for so much strength for you and your family. Hugs.
Wow, Brandi, you are a great writer. Thank you for putting this story out there. Both of my sons, Henry and Bruno, love playing music with Caleb. He has introduced them to some great licks on the guitar and they are inspired by his taste in music. Bruno gets to jam with Caleb at recess, from what I hear. I love the mother-as-lion-tamer imagery in your profile. I think it’s all going to work out because…well, because it just has to, so I will keep my mind on that thought. Sincerely, Kathryn Drury
Wow, Brandi, you are a great writer. Thank you for putting this story out there. Both of my sons, Henry and Bruno, love playing music with Caleb. He has introduced them to some great licks on the guitar and they are inspired by his taste in music. Henry is at U-32 now but Bruno is still at Twinfield and gets to jam with Caleb at recess, from what I hear. I love the mother-as-lion-tamer imagery in your profile. I think it’s all going to work out because…well, because it just has to, so I will keep my mind on that thought. Sincerely, Kathryn Drury
Praying for you and Caleb. Thank you for sharing your story.