April is National Donate Life Month and Bunny, Pip, and I want you to be very aware because without organ donation and transplant, Pip wouldn’t be with us today.
More than 115,000 men, women, and children need life-saving organ transplants right now and every 10 minutes, another name is added to the list. An average of 18 people die each day waiting for organs.
This month, I’m gonna tell Pip’s story – a little bit every day. We need to improve these statistics. Learning more and talking more and sharing more is the first step.
The reason they tell you that Biliary Atresia has no cure is that a “cure” indicates that the problem is solved. With transplant, even though the Biliary Atresia is gone and can never return, we have traded a fatal illness for a chronic condition that is, in itself, somewhat fraught.
But I gotta tell ya, Pip’s life is as close to normal right now as you could possibly imagine.
Pip does everything a normal 4.5-year-old boy does and often he does it bigger and with more gusto. One of my friends once said, “I know he can’t possibly remember being so sick, but he certainly lives his life as if he recognizes that he finally feels really good.”
It’s easy to want to put him in a plastic bubble. I am a member of an online support group for families of kids with pediatric liver disease so I know the stories of transplant kids from all over the world. Every transplant team has different rules and regulations for kids who are post-transplant. Some say no contact sports. Some say no swimming in the lake. There is one that requires the parents to remove the child from school for two weeks any time anyone in the entire school is diagnosed with the flu. How does that child ever attend class?
Pip’s doctors understand how scary it is. But their philosophy is “We didn’t save his life to not let him live it.” It’s a great philosophy. I used to repeat it to myself a lot when I was tempted to limit him.
It’s terrifying to have a child who is immune suppressed – especially in the first couple years. It doesn’t just mean that he gets every bug that comes within a mile radius, though he does. And it doesn’t just mean that whatever he gets, he gets worse and it sticks around longer, though that surely happens. It also means that there are viruses that are potentially deadly for him that would not be deadly for us. The craziest one is the Epstein-Barre Virus (EBV) which causes mono for you and me and causes cancer for transplant kids. How crazy is that? It’s a scary one. He’s tested for it regularly.
His skin can’t repair from sun damage, either. So we are very careful in the sun. He practically wears body armor while frolicking in the surf. Fortunately, he doesn’t seem to notice.
For the first couple years, I followed him around with sanitizer. I was tempted to keep him away from any place where other children were playing but I would remember the philosophy we had adopted and I’d suck it up. Still, I would try to watch him and guess what he was going to touch and then sanitize it before he could get to it because I wanted him to be safe but I didn’t want to stop him from playing.
As time went on, though, and I watched as he licked the bottom of his shoe immediately after I had carefully sanitized his hands and toys, I figured the best I could do was to let him go and do his thing and hope for the best. So we don’t limit him in any way. And although I try to sanitize his hands before he eats, it’s hit or miss. Lately, it’s mostly miss.
Instead of freaking out over germs, I make sure that we pay close attention to quality of life because, without it, quantity is meaningless. Our experience with Pip has taught me that and I’m grateful for the lesson.
So, during the summer (which I really hope is almost here), I never go anywhere without a towel and a change of clothes for both kids. That way, I can say yes at every sprinkler, every water play area, every fountain, and every mud puddle. I always carry a bit of cash so that I can say yes when we hear the ice cream truck.
Certainly, there are ways in which his life is different from his peers. He goes to the doctor a lot more often than his friends do. He is probably the only four-year-old I know who will sit down in a lab on his own and stretch out his right arm so a phlebotomist can poke it with a needle. He takes meds – cyclosporine (his anti-rejection immune suppressant) and magnesium to replace what’s lost when the anti-rejection meds leaches it from his cells and blood pressure meds because the immune suppressant raises his blood pressure.
However, he has been enrolled in a study that is investigating the possibility of removing children from their anti-rejection meds completely. He is on week 7 of a 36-week taper and he now only takes the drugs once a day. The blood draws are far more often because of the study – every other week and occasionally once a week – but imagine the possibility here if they are successful! No more meds? Are you kidding me? If it happens, that will be amazing. If he rejects his liver because of this study, he’ll be back in the hospital for 3 days for steroid infusions, they’ll raise the meds back up to where they were, and we’ll move on. And that’s OK, too. It’s a small price to pay to have him here.
But the possibility! You guys! It’s really unreal. Look how far pediatric transplant has come in less than 20 years! This is not at all the life I imagined on the day he was diagnosed. I never thought we could achieve this level of normal. I never pictured the jumping, running, leaping, singing, dancing, summersaulting, pre-kindergartner we have today.
Transplant made that possible. It gave him his life back.
It gives life every day to children and mothers and fathers and friends. Every. Single. Day.
If you wanna go back to the beginning and read the whole story, click this here link.
To learn more about organ donation and to make sure you’re on the registry for your state, visit www.donatelife.net
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