Cheerfully Do All Things

We are closing out Day -4.

A brief recap so far:

On Tuesday (Day -6), Aaron got his central line placed. He has an external line (a Broviac), which means the tubing hangs outside of his body. His surgery was scheduled for 2:00 in the afternoon, but they were running about two hours behind, so it was a long day of waiting (and hunger) for him.

On Wednesday (Day -5), Aaron had his first dose of chemo (cyclophosphamide, or cytoxan). It was undramatic. He built a Lego set and sucked on ice and when the infusion was nearly finished, he asked if it had started yet.

Today (Day -4), he got his second dose of chemo and his first dose of anti-thymocyte globulin (ATG--an immunosuppresant drug). The ATG infusion is very long (8 hours). We had one little bump about two hours into it when Aaron suddenly started shaking uncontrollably. Luckily, the nurse acted on it quickly, and it had fully subsided within an hour. He had a little bit of nausea this evening as well, but that's been about the extent of the bad stuff.

In addition to the cytoxan and ATG, Aaron is also on three anti-nausea meds and several other preventative medications. He is literally being pumped full of things. (Last night, Maxwell said, "I can just imagine the look on Aaron's face when he gets to come home from the hospital, and he is loosed from all his safety restraints." It was such a Max way of putting it, but I agree that I think Aaron will be overjoyed when he is no longer tethered to an IV pole all day.)

I am convinced that Aaron's good response to all the drugs so far is a direct result of the hundreds of prayers being sent heavenward on his behalf. Sometimes people, almost apologetically, tell me, "I know it isn't much, but I'm praying for Aaron." To which I always respond, "Those prayers are the very things buoying us up and getting us through." We are being blessed day and night because of those prayers.

A couple of months ago, I came across a scripture that has since become one of my very favorites:

"Let us cheerfully do all things that lie in our power; and then may we stand still, with the utmost assurance, to see the salvation of God, and for his arm to be revealed."
--Doctrine and Covenants 123:17 

After Aaron was diagnosed, I showed it to him and we decided to adopt it as our mantra during this health challenge. We love it because it places a certain amount of responsibility on us ("cheerfully do all things that lie in our power"), but after we've done our part, we get to stand still and see God do His mighty work.

With that in mind, we decided that we would try our best to follow all instructions from the doctors and nurses with exactness.

I can tell you that even just three days into the treatment, this isn't easy.

It means that if the nurse says to do oral care four times a day, Aaron has to do it, even if he doesn't like it (spoiler: he doesn't).

It means that if Grandpa brings a big box of beautiful pastries, but the nurse says they don't comply with Aaron's low microbial diet, he can't eat them.

These things are hard. And unfortunately, most of the effort is required by Aaron, not me. I wish I could do it for him, but I am merely the cheerleader on the side, reminding and encouraging and supporting, but ultimately he has to choose for himself.

This morning his nurse said to me, "I cannot believe this kid. My hardest patients (by far) are always the 10-18 year-old boys, but not him. We need to have him give a workshop to the other kids on how to be a good patient. If you ever decide to give him up for adoption, I'll fill out the paperwork for myself immediately."

This is not to imply that he has been unfailingly optimistic. He has not. His mood is volatile. Little things trigger a downward turn. Those are the times that make me hurt for him. I won't go into specifics because these are not my experiences to share, but all of the good moments we've had this week have been balanced out with ones that are decidedly more bitter.

But we are trying. We have our scripture on the wall (my dear friend, Sarah, turned it into an awesome poster for us); we keep a daily list of blessings; we take frequent breaks from screens (Legos have been the activity of choice for sure); we get to know the nurses and staff; we laugh and joke; we look for the good.

In short, we are trying to cheerfully do all things that lie in our power. (But with only three days checked off, we still have a long way to go.)

And every day, we have the opportunity to stand still and see what more God can do. And so far, He has done a lot.