The Beginning of Kidney Failure
We knew what would happen to Quinnlin. We knew she would start to decline quickly when it started and we knew what that meant. She’d be tired, she’d be itchy, she’d stop eating and growing. We absolutely knew that her life would be in danger. We knew dialysis was a risk which would bring surgeries, treatments and more risk for her life. That is why we fought. We fought for her right to not be subjected to this, if at all possible, because we had willing donors, with Cheryl at the top of the list, having been blood cross-matched to Gage 2 years earlier as Gage and Quinnlin shared the same blood type.
Fighting for Quinnlin’s transplant wasn’t easy. We fought with advocates in her corner. In the phone calls to a case manager, in a doctor who’d seen Gage suffer and who had reasoned that Quinnlin didn’t need to. Getting a 2nd opinion in another city who said, “Yes, let’s do this now.” to push the first center into doing what should have been done in the first place; an aggressive push towards a preemptive transplant. At the very least, Quinnlin deserved that everyone involved in her care push towards that if it could be done.
One thing we didn’t have to fight for was Cheryl. When we were ready, she was too. With fear I called her one day to see if she’d mind having the transplant in ANOTHER CITY. Away from her support system of friends and family. Away from her kids and possibly her husband to recover.
She said, “Of course, whatever Quinn needs, whatever has to be done, I’ll do.” Never wavering, not one second to give Quinnlin a future of possibilities that included energy, growth, play, proms, driving. Instead of being hooked up to a machine to live, like her brother. “Well, of course, why wouldn’t I want to do anything to give her a kidney?”
Throughout the process of testing (which includes a battery of tests on every inch of your body) she kept us updated. She said, “I want you to know what is going on so you don’t worry, because I would want to know if it was my daughter waiting.” During testing she said to me, “I never knew I had to pee so much until I had to collect it.” So she made me laugh at a nearly unlaughable time in our family life. At the time our son was spiraling deeper into despair, into suicidal thoughts and rage and yet, Cheryl made this part of the process seem like everyday to her; simple. “I get tested and I’ll donate and that will be that.”
I am certain Cheryl had more faith than I did that it would work out. She just knew she’d be the one. It was so clear to her and it seemed like she knew what I didn’t. I found that comforting because it allowed me the chance to focus on Quinnlin and her ever-increasing needs. Cheryl gave me permission to not worry about the donor testing side.
I’ll never forget all of the times that Cheryl made herself available to news crews so we could raise awareness about ARPKD. She did however, get her hair professionally done each time so that it looked a lot better than mine, but I LET THAT GO in interest of the matters at hand. Within a few hours of the transplant Quinnlin’s numbers began to lower and within 14 hours they were lower than when she was born. Quinnlin had never had normal function. She’d operated on never near perfect kidney function that we didn’t know what to expect with a healthy girl.
Cheryl was let out of the hospital in record time. She’d refused hard drugs because she heard she’d do better and she survived on Tylenol and was out of the hospital in two days. Where she visited my girl. She leaned over in pain to have her picture taken with the girl with her other kidney.
Cheryl isn’t a fanfare person. I can gush and gush and she’s all like, “I’m so happy she’s doing so well.” And then she’ll get back to drinking her coffee when we camp. I look over at her and I think to myself, “She has no idea what she has done, besides the kidney function.”
She doesn’t know that when I look at my girl that I have hope. I have hope that she’ll grow up. I have hope that I’ll be writing something like this in Two Years, Seven Years, Ten Years. Who knows, really? Who knows how long this kidney will last. What I do know is that I’ll never take it for granted that she wanted to help my girl live a better life. I’ll always be grateful, as only a mother can be, that another mother and one before that gave my kids the world. They gave my kids the gift of the world of possibilities.
When I see Quinnlin smile, enjoy life, give me hug after incredible hug I think about Cheryl and how an act of generosity so great changed Quinnlin’s life in immeasurable ways. I’m forever grateful for the sacrifice, risk, love and devotion to help one little girl live a bigger, better life.
As a mother, to a mother, I can never repay you for your gift. I can only help Quinnlin live the best life possible; one she so richly deserves.
Much love and gratitude,
Julia, Quinnlin’s Proud Momma
P.S. Quinnlin says, “Thank you for giving me a kidney. It works pretty good.”
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