The Best Laid Plans…

With surgery set for Wednesday, Monday was a big prep day for Colin, but he demonstrated yet again that our careful planning can be rendered irrelevant by the result of a single blood culture. In short, Colin does not head to Le Bonheur for surgery, not yet at least. As it stands, his surgery has been rescheduled for Friday, January 22, contingent on 10 days of clean blood cultures.

On Sunday night (technically, early Sunday morning), Colin spiked a decent fever that sent us to the hospital for an evaluation and quick infusion of antibiotics. It was one of the many times that I was grateful to have the nurse there, first to detect the late night fever in the first place, and second to help get Colin to St. Jude and back.

As part of standard procedure, they ran bloodwork to take a peek at Colin’s immune system and took blood cultures to see if there was an active infection. All of this took place at around three in the morning, but we fortunately had a turn-around time of around two hours, including transit. With his ANC at 2,900 and a decent amount of white blood cells, this was not a neutropenic fever, so they did not need to institute especially careful precautions and admit him simply because he was febrile.

However, the impending surgery was the biggest thing on my mind. We returned to Target House and put Colin back to bed looking tired and pale but otherwise fine. His temperature didn’t rise again precipitously, and I packed him up for his morning clinic visit with every expectation that we would return before his early afternoon rehab appointments.

One thing I wasn’t sure of was whether he would receive a transfusion of red blood cells; his hemoglobin was 9.9, which is a bit low for a normal person but perfectly acceptable under the circumstances. However Dr. DeWire ordered a half unit of blood that unexpectedly (to me) took over two hours to infuse.

While waiting, our nurse from the clinic came in as the harbinger of bad news: a line infection. The blood cultured gram positive cocci, which is the same class of beasties that Colin dealt with in his first week here at St. Jude (ah, fond memories of past bacterial infections!). By Tuesday morning, we found out that these have been identified as pairs and chains, which likely indicates streptococcus or enterococcus. It is perfectly reasonable to expect antibiotics to clear the line effectively, but only time will reveal greater details about this bacterium, such as susceptibility to specific antibiotics, that will help us fix the problem.

In all honesty, the infection itself didn’t overly concern me because I am confident that it will be dealt with, but I knew this meant that our plans for surgery had to be scrapped. The most concerning aspect of this was the fact that Dr. Boop is leaving town for the last week of January, so next week is Colin’s only opportunity to have surgery essentially until February!

Jumping past my own agonizing and fussing over this fact before we learned the resolution of the question, Dr. DeWire told us that Dr. Gajjar approved Colin for surgery on the 22nd, which allows a 10-day period of negative cultures to prove that the infection has resolved. It is the only day available on Dr. Boop’s schedule and gets Colin in the operating theater just in the nick of time. Dr. Boop’s partner will have to do follow-up on Colin, but I think we’re all much less concerned about that than the surgery itself.

Although the focus in these situations is always on the bad thing (line infection = delayed surgery) that everybody braces themselves to talk to you about, the truth is that this situation creates opportunity for Colin. When looking at the good news/bad news columns, I think the good news outweighs the bad news.

Bad News

• Delay in surgery
• Disruption of our plans to have Aidan stay back home for about two weeks (quickly evolving into three weeks now)
• Loss of wiggle room: We had already anticipated some wiggle room in the event of a very difficult surgery or immediate aftermath, but now it just means that this time is being expended at the get-go

Good News

• More time to party it up
• Get stronger for surgery

Since saying “mama” and “roar,” he has spoken very little (a quick roar to his friend Belle), and this is something we try to coax out of him whenever we can. Generally speaking, we are giving him more exercise in eating and taking food in his mouth, which is a slow process to foster. It has taken days to understand the parameters of what he can handle and what actually motivates him.

As for Colin’s gross motor skills, despite the fatigue and sporadic vomiting that have come with this infection, he continues to improve. On Monday, he stood independently, holding onto a table or counter, quite a bit. He is now accustomed to “walking” everywhere, though this is absolute murder on my back. I had some months ago made the bold proclamation that we would have Colin walking (with the support of a walker) before radiation, and we have a shot at reaching that goal.

Finally, there is the matter of the Peabody ducks. Yesterday, I realized that there was no way I could reasonably fulfill the promise to him that he would go see the ducks, and now we can. Our visit at the hospital should be relatively short, and then we fall back into the flow of outpatient life.

The more Colin does in this precious time between surgeries, the better for him and for us. So many people who see him here are shocked and amazed by how well he looks and how much he has accomplished. We love trotting him around and showing off his new abilities like the prize-winning country fair piglet that he is.

At the same time, this constitutes an opportunity for the tumor to gain its strength back. We can only hope that chemo has had enough of an effect on the remnant that this extra reprieve from surgery is only beneficial. Fortunately, ependymoma does not tend to be as rabid as some other tumors.

The staff upstairs has enjoyed seeing Colin because he’s improved so much. Despite his infection, he’s quite well and impresses everybody with his vigor and playfulness. His greatest risk at the moment seems to be injuring himself from being too goofy and throwing himself around the crib.

Not having Aidan around is strange, both easier because we don’t have to worry about him complaining about coming to the hospital, and difficult because he is the best medicine for all of us. We can only hope that there are other children around here who can serve as a proxy for the competitive motivation that Aidan provides.

While Aidan is back home, we are trying to arrange for him to spend time with friends and family. He is attending Hudson Country Montessori School during the week, as they have graciously allowed him to return to his old classroom during his time there. Not only does this give him something constructive to do during the day, but it also allows him to return to the life that he has so greatly missed. We are very thankful that he can actually spend his days being “normal” again, though we aren’t there to enjoy it with him.

We would like to thank everybody for the many encouraging messages, thoughts, and prayers for Colin’s upcoming surgery. This adventure has been made easier knowing that we are supported by so many people, some even strangers to us. Colin never fails to surprise us, both with positive and negative news, but until we get negative news that can’t be undone, things like line infections are only bumps in the road that remind us of the meaning of hubris and the value of taking (just) the next step.