Terminal is not a curse

(of a disease) predicted to lead to death, especially “terminal cancer”

Hearing the words “your child’s cancer is terminal” is one devastating sentence.  A sentence you fear every day after hearing your child has cancer.  It is heartbreaking when all the hope you have, all the hope you have built up during the initial fight, during the countless hours spent in the hospital keeping things clean, keeping your child safe, comes crashing down on you.  It feels like you are suffocating in a room full of people who are breathing just fine.   But after that initial shock wears off, the grieving of your future fades, and time moves on, you realize that terminal isn’t the curse you imagined it to be.

When we learned that Kendal’s cancer was terminal, we began grieving.  We knew that we most likely, short of a miracle, would not see our baby girl grow up.  We wouldn’t see her have her first day of school.  We wouldn’t see her go to prom, drive a car, graduate, go to college, get married, have kids of her own, and everything in between.  The day we learned the cancer was back, we began to grieve the loss of her, even when she was still here, but not in a negative, unhealthy way.  Just in the way of acceptance.  This is happening, there’s nothing we can do, let’s take this time and enjoy everything we possibly can.  And I am extremely grateful for that.  Although nothing will prepare you for the actual loss.  The death of your child right in front of you.  Knowing that your time with them is limited – that they are terminal – helped me in more ways than I originally anticipated.

Knowing your child is going to die makes you very aware of time.  The time you spend with them.  How many times you say I love you a day to them.  How many hugs and kisses you give them.  It makes you appreciate things and moments that you normally would not.  I have videos on my phone of Kenedi and Kendal fighting over a toy and screaming and crying at each other.  In a normal day, this would have been SO ANNOYING to me (and don’t get me wrong, there were still plenty of times I was annoyed with the screaming and fighting).  But after learning Kendal was terminal, I recorded the altercation(s) to remember, to show Kenedi, to savor the moments of the mundane.

Since learning Kendal’s cancer would kill her, I have taken almost 3000 photos on my phone.  Three-thousand photos.  In just over 3 months.  And that’s not including all the photos we’ve had our wonderful friends Bridget and Emily take.  We’ve had professional photos done about 6 times in the last 3 months.  Talking Aaron into professional photos once a year was usually like pulling teeth, but not now.  The more photos the better.  We have beautiful photos during transplant when hope was still alive.  We have photos after we learned Kendal was terminal, but super healthy and happy.  We have photos of everyday fun with sisters dressing up in fun dresses.  We have photos from Disney meeting all the princesses and, most importantly, Nemo. We have photos of having fun at our last outing as a family at the Twins game.  And we have hard photos of Kendal’s last day, and last moments of life.  We have had the blessing of knowing Kendal was going to die, and in that, we have been able to document and memorialize every last moment of her short life.

Knowing that Kendal was terminal also gave us some relief from treatments.  Once we tried the experimental drug with Kendal and that failed, I feel like I was finally given permission to give up hope, stop fighting so hard and enjoy our last days with her.  We were able to leave the hospital and do whatever we wanted.  We didn’t have to over obsess about germs.  We were able to go to baseball games, the park, play in the dirt, have people visit, play in the sun, and not worry about if she would pick up a germ and get sick.  We were still cautious, but we weren’t transplant-obsessed (if that is such a thing).  Being terminal gave us the freedom to let Kendal live her childhood.  Her childhood that had been stolen from her the previous 7 months.  Her childhood that would be stolen from her once cancer claimed her life.

So, sure, terminal is a dirty word when you initially think about it.  It’s heartbreaking to know that your sweet little child is going to die.  But I believe that the moment we learned Kendal was terminal (short of a miracle) back in June, was when we actually started living.  It was the moment we actually began letting Kendal be a kid again.  And that was such a blessing.