Chandra's Journal
November 15, 2005…
Yesterday was the day that we were told Canon would be coming off the “chicken pox hold”. I had all kinds of plans to have the house cleaned, the laundry done, the bags packed, bills paid, keys made, etc. by this week. However, as most of you probably already know, the transplant team threw us a curve ball and called us to come for transplant on Wednesday of last week.
I had just managed to get all my kindergarteners to sit on the carpet, crisscross applesauce (a fun kinder term), for a story about bats. Then Sandy, our secretary, called me on the intercom, “Mrs. Perkins, your husband is on the phone and Delma is on her way to cover your class so you can come talk to him.” My first thought was, ‘Why didn’t he call my cell phone?’ (Answer: He did. But I had left it in the car to charge, of course.) My second thought was, ‘Why is Sandy letting me talk to him?’ (Usually if we get a call during class, they just take a message and put it in our box.) When Delma arrived to cover the class for me, I was giving her instructions on how to read the book (she’s our curriculum specialist!), “I’m reading the rhyming part only, not the facts. And then I show them the picture. And then we talk about it…” Delma hurried me out the door saying, “Don’t worry, go!” I walked down the hall, wondering what he needed. About halfway down, it sunk in that there might be an emergency and I actually started to hurry and my heart began to throb. Sure enough, when Sandy handed me the phone, Drew said, “We got the call. We have about two hours until the plane gets here. Can you go home and start packing?” Whoa. What about the hold?? “They said it would be okay, that he’s close enough and they have a donor.” So, realizing that this was it, I tried to make sure everything would be okay at school (everybody kept saying, “Don’t worry about us!”) and then I left. It was probably about 11:30 when I called Rhonda to ask her if she could meet us at our house with the boys. Bless her heart, she was just as nervous as we were. Dean McIntosh also left work and met us at the house to help. Drew was on and off the phone with the transplant coordinator and the Kangaroo Crew (transportation to/from the hospital). Rhonda started to feed Canon some pizza and strawberries for lunch when the coordinator called to tell us he couldn’t eat or drink anymore. Ahhh! I was so tempted to go ahead and just feed him real quick so he wouldn’t be hungry all afternoon, but my logical side (i.e. Drew) won that argument. I was very conscious of my desire to not “lose it” in front of Canon. I didn’t want him to sense the tension in the house, so I really tried to talk, smile, and move in a normal pace.
The McIntoshes came with us to the airport where, with knots in all our stomachs, we watched the Lear jet land and loaded up. From his window seat on the plane, Canon could see Mr. Dean, Ms. Rhonda, Dane, Dayton, and Creed on the tarmac waving at us. I don’t think they could see inside, but Canon was waving back saying, “Bye, bye!” It was not the first time that I was so thankful that he is young enough to not know what’s going on.
Shortly after the plane took off, I told Canon, “It’s time to take a nap. Night, night. I love you.” I began to stroke the side of his head and he drifted off in just a couple of minutes. I leaned my head, chaotic with worry and relief at the same time, against his head, peacefully sleeping, and thought about middle school lessons of reverse osmosis. I prayed there and cried there, right there next to him. Then I took off my seat belt and moved up to the chair across from Drew. We reached out and took each other’s hands and I began to cry. Drew leaned forward and we rested on each other’s shoulders. I just cried, out of lack of coherent thought, I think. Then I heard Drew whispering in my ear… a prayer. As I listened to my husband pray intently for Canon, for the doctors and nurses, for me, for himself, for Creed, and for the donor’s family, my tears subsided and I regained a sense of peace. The peace that comes from knowing that God is in control. How else could we explain the way people have so generously poured themselves into Canon’s campaign to raise money for the transplant? What about the fact that we had been on the list for a month, but got called for a liver one week after Canon’s new insurance went into effect? That moment was surreal. Realizing that God had strengthened our relationship in the past few weeks, preparing us for this moment, when we would have to help each other be strong for Canon; looking back and seeing Canon in his car seat by the window, sleeping peacefully, with no knowledge (read: worry) about what’s to come; looking out the window and seeing the clouds below us, a marshmallow meadow with the noon sun reflecting off the peaks. In that moment, all I could think about was the song, “I Can Only Imagine” (another sacred song that I just don’t sing anymore). But I could hear it in my head, “I can only imagine when that day comes and I find myself standing in the sun… Surrounded by your glory what will my heart feel? Will I dance for you Jesus, or in awe of you be still? Will I stand in your presence, or to my knees will I fall? Will I sing hallelujah? Will I be able to speak at all? I can only imagine…”
The rest of the very short flight (about an hour and ten minutes to get from Amarillo to Houston) was, almost content. Drew and I talked about the jet (Drew decided it really is the only way to travel!), what we might have forgotten, and reminisced about how it felt when the call actually came.
We landed in Houston and met an ambulance from Texas Children’s Hospital. The transport team was there, too, getting on the jet to go get a child from the valley that was going to split the liver with Canon. Of course, they couldn’t tell me the gender or age of the other child; it was strange to know there was another family that was going through the same feelings we were that day.
The ambulance ride to the hospital seemed to take almost as long as the flight from Amarillo! It was at least a thirty minute drive through Houston traffic (no sirens – we were disappointed!). When we finally pulled up in the ambulance bay of the emergency room, we climbed out and met Jaymee, our transplant coordinator at the door.
“We have to cancel it,” Jaymee told us immediately, grimacing like she drew the short straw and had to be the one to tell us. I remember Drew and I just stared at her; I kept waiting for her to say, “Just kidding! Come on!” She didn’t. She explained that the donor liver, they had just discovered, was going to be too big. Well, weren’t they going to split it anyway? Yes. But the liver has a right lobe and a left lobe, and, evidently, you have to transplant the whole lobe. And in this case, both lobes were too big.
They have been telling us all along that that might happen, a “dry run”. Actually, they told us to expect it to happen. After I recovered from the initial shock, I can honestly be thankful that this particular team is not afraid to make that call. That even after they flew us down there and everybody’s prepared, if it doesn’t look PERFECT, they’ll send everybody home and not think twice about it. Maybe that’s one reason that the transplant survival rate at TCH is over 10% higher than the national average.
Almost immediately after Jaymee told us it was a no-go, Drew got out Canon’s cup and poured him some Pediasure. Canon was SO thirsty! We also had to make some disappointing phone calls to our parents. My parents were actually there already, in the third floor waiting room! Drew’s parents had already been driving for several hours on their way down from Abilene. It was weird not to see my mom and dad and brothers, knowing we were right there! But Jaymee told us the ambulance driver was going to take us right back to the airport, where the jet was still there, waiting to take us back home.
You know, when I think back about the drive back to the airport and the flight back home, I’m surprised to realize that we were a little bit… delirious? Drew might choose a different word. But we were so simultaneously depressed and thankful that the combination made us just want to… laugh? I know that sounds weird. And Drew said that maybe part of the reason I was not crying was that I was a little bit relieved. That’s probably true. Relieved that they were not going to transplant my son with a liver that wasn’t ideal.
So, we flew back home just after sunset, the only light coming from the pilot’s dashboard, the blinking lights on the wings, and Finding Nemo on the portable DVD player! I know, what a shock! The real shock is that we made it from Houston to Amarillo in less time than it takes to actually find Nemo!
We’ve discussed lessons that we’ve learned from our “dry run”. We might wait a little bit longer to actually tell people that we got the call (to which my mother replied, “You better not!”). Of course, I intend to be more prepared from now on (the house and laundry and such). But the most valuable thing, I think, is just knowing the kind of pace that things will go. In my head, I had it pictured like the floor of the New York stock exchange, you know? People screaming and flailing their arms. Don’t get me wrong, everybody moved quickly, but when Jaymee called she sounded calm. The pilots loaded our luggage carefully and took off calmly and methodically (though 540 miles per hour HAS TO BE speeding). The ambulance driver didn’t turn on the lights and sirens. Little things like that tell me that we’re in a good position right now – stable and at the top of the list.
I think the trip might have actually pounded into my head that this is actually going to happen. He will get a new liver, probably very soon, and we can start to deal with the transplant immediately and then look forward to the rest of his life. And yes, it’s the scariest thing in the world to us right now. But we know God is in control.
Chandra
For I know the plans I have for you, says the Lord. They are plans for good… to give you a future and a hope.
Jeremiah 29:11 (LB)