One-Upmanship

After Thursday’s flood of good news, it seemed impossible that the trend would continue.

However, Colin wasn’t having any of that. Friday’s first big event was the transesophogeal echocardiogram, which was quick but required sedation.

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Dr. Joshi #1 (the cardiologist) came to take another look at the vegetation in Colin’s heart. Predictably, it took longer to set up sedation than it did to perform the procedure. Because Dr. Joshi already examined Colin’s heart in the past, he was primarily looking at the vegetation on the wall of the right atrium as well as the fibrin sheath from the previous catheter, which also had vegetation growing on it.

The fibrin sheath from the old catheter and whatever was attached to it are now completely gone. Better still, the vegetation, which he described as “a pile of mashed potatoes” at last examination, now looked like “the eraser of a pencil.” I think these measurements are not literal but figurative. His earlier report had described the vegetation as over a centimeter long, which is a minute serving of mashed potatoes.

The point is that the evidence of infection in Colin’s heart has improved dramatically, and it is possibly gone completely, since there is no way for us to tell what that pencil eraser is composed of. The danger of the vegetation is that it is comprised of a combination of fibrin, platelets, and fungus. The vegetation can harbor live fungus buried inside, so we have to wait for the process of erosion to reduce the vegetation and, hopefully, expose all of the live fungus. Also, Dr. Joshi let us know that the remnant can calcify and create a visible artifact that we can continue to detect through imaging, even though it is benign.

The anti-fungal regimen we have been using for the past several months, which involves a combination of micafungin and fluconazole, both delivered by I.V., was for active treatment of the infection. The micafungin can be provided in a home infusion, thus saving Colin from time at the hospital. However, the fluconazole is another story because it is relatively unstable, so a home dose would involve an unacceptable amount of extra fluid (300 mL). Thus, we have elected to get daily infusions of a much smaller volume of fluid in the hospital.

The reduction of the vegetation means that Colin can now forego his daily hour-long infusion of fluconazole in the medicine room. Yippee! It may not seem like a big deal, but this has involved trips to the hospital every day, even on weekends, and often a significant wait in addition to the actual infusion.

Instead, we are giving Colin oral fluconazole. When Infectious Disease is comfortable with the state of Colin’s endocarditis, at some point after he recovers from surgery, we will drop the micafungin, which would eliminate an I.V. medication.

On the I.V. front, we have been gradually reducing the amount of electrolytes that Colin receives through I.V. fluids overnight, and we have cut the time down from 12 hours to eight. The latest formulation contains only magnesium, a tremendous improvement over the five-compound concoction he left the hospital with only two weeks ago.

This is all a boring level of detail, but the upshot is that Colin’s kidneys are recovering from the insult of chemotherapy. Dr. DeWire is “challenging” his system by providing less and less magnesium. With any luck, he will be off of it entirely or close to it by the time he goes in for surgery.

Eye of the Tiger

Part of our goal in preparing for his surgery was to get him in peak physical condition. We let the physical therapist know how important we feel rehab is for Colin, particularly in this precious gap between chemo and surgery. She has been working with us on exercises to do with him and what reasonable goals we should set.

Over the past two weeks, we have been focusing on getting Colin on his knees, though of course we’d like to get him standing. He has started crawling with support, but it’s not something he has been doing often or with relish.

While waiting for our clinic appointment, we took the boys to the padded play area in the corner between our clinic, E (brain tumor) and the one next to it, D (solid tumor). At first, Colin wanted to play with a doll house that another child was playing with, but was happy to sit down and throw vinyl-covered blocks around.

Aidan, who had a snowless snow day (this may have more to do with the difficulty of starting diesel school buses in the cold), was bopping around the play area, climbing to the top of a structure composed of vinyl blocks that is intended for just this purpose. Colin quickly got the idea to join him and started off on crawling, much more competently than he had in the past. His determination to crawl, sometimes resting by putting his head on the ground, and ultimately climb to the top, was astonishing and wonderful.

Right after this adventure, Colin had a physical therapy appointment, which we worried he would be too tuckered out for. Bear in mind that he had actually been sedated only hours before! Even so, we were delighted to report his unexpected progress.

Well, Colin wasn’t done yet and demanded to walk up the rehab stairs! He walked up, with me supporting him quite a bit and the physical therapist positioning his feet. At the top, he rested for a moment then decided to walk down. At the bottom of the stairs, he just kept trucking toward Dad.

Physical therapy has a contraption called a “LiteGait” (when I first heard the name, I was thinking more StarGate) that is very cool but a little scary, even for Colin. It requires a harness and multiple buckles. We have tried getting him in it in the past, but he was terrified.

This time, we asked Aidan to “try it out” by just hanging onto the handles and scooting around the rehab gym. In typical form, he wanted to go through a door that was way too narrow and head to parts unknown. All this activity got Colin interested in the device and anxious to take his turn.

Colin still wasn’t thrilled about the harness, but we pushed forward and, after some complaints, he was actually thrilled with the idea of walking. The stint was relatively short but a good introduction to something we knew was going to be a challenge to get him to use.

Immediately when he was done, Colin decided it was time to attack the stairs again, which he did with much more confidence, even holding onto the hand rail and stopping at the top to stand holding on the rail with only minimal support from us. He came down the other side very pleased with himself and all of the praise and amazement.

Even so, he wasn’t done and crawled across a PT mat table to get to Aidan’s Nintendo DS. We praised Aidan for allowing his precious device to enter the line of fire. He won major “super sib” points on Friday and justified his hiatus from school.

After Dad and Aidan left for home on Saturday morning, Colin continued his activities at Target House. I was able to put him through his paces, and he was happy to play on his own when we weren’t messing around together. He is definitely getting much stronger. His last weight was 17.0 kilograms, which is about 37.5 pounds, and I suspect that much of this is muscle.

Colin has always been strong, but now he is able to more effectively fend of anything he doesn’t like. Suctioning can become an impossible wrestling match, and he often curls himself into a position that cannot be unfurled without at least one adult devoted to keeping him flat.

Every day, Colin’s confidence in his ability to manipulate his body grows, and he both tries new things and advances further with old ones. Left to his own devices, he can crawl across the mat like a wounded soldier in a war movie, the good side dragging along the rest of his body. It’s awkward yet strangely effective, and similar to when he learned how to crawl in the first place. Then, he would always get himself turned around in odd directions because of the way he sat up, rotating by 90-degree turns.

Now, Colin’s stronger left side tends to rotate him to the right while his right side struggles to do its part. If I support his body, he will crawl straight. Otherwise, he gets into a good crawl position, loses it once he tries to put pressure on the right side, and then ends up pulling himself with his left arm and leg.

Strangely enough, Colin is getting used to this and doesn’t require much by way of motivation to get him to go across the mat. It helps that he is no longer connected to anything during the day, and I completely close up the buttons for his feeding tubes so his belly is relatively smooth. The tubes are not designed to tolerate the kind of movement that Colin generates, so when he is hooked up, they tend to leak all over the place through a small port used for medications (yuck!).

Any amount of gastric juice/Peptamen Jr. clean-up is worth it to help him with his training efforts, it is handy to avoid it and an absolute joy to see him liberated from the tubes that have anchored him to one pump or another for months.

First Date

The highlight of Saturday was a play date with his girlfriend, Belle. She is an older woman, three weeks his senior, and is in the same treatment protocol. We sometimes refer to her as “Cindy Lou Who” because she is a precious imp who could have been by Dr. Seuss if he had composed a book featuring children going through brain tumor treatment.

Seeing Belle with Colin, it is clear how much he enjoys being around other children, especially such a precocious and loquacious companion. The two of then steal each other’s noses, though Colin often crinkles his face up and whimpers when Belle takes his.

On Saturday, the two shared a meal of plastic sushi. Belle asked me what was in it and Colin gobbled it and other plastic delicacies. At this age, there is little interactive play, but it’s still cute to see them together, and they have a relationship. Colin lights up when he hears that Belle is nearby and whimpers when they part.

Belle has long voiced her curiosity about Colin. “Wha’s he DO-ing?” “Whe’s his DA-ddy?” or, when Colin is not with us, “Whe’s CO-lin?” When they meet in the hall, she often points at her shirt or jacket sleeve and prompts Colin to feel it. This started one day when she was wearing a soft jacket, and I’m not entirely sure which child initiated it, but the tradition continues.

The two of them form a sharp contrast, Belle precociously gabby and Colin (still) largely mute. However, both are very sociable and well known around Target House and the hospital and make a suitable couple.

We are very happy that the children have this chance to play together. Although it is natural for these little friendships to sprout here at the hospital, the practicalities of having play dates are much different in this environment. For one thing, the children on this protocol, all three and under, have their chemo done while inpatient.

It means that some of their time together is at the hospital, assuming the children are feeling up to being out of the room and playing. For the most part, if they are well enough to be in the play room, they are sent home (Target House home, not necessarily home home). Between unexpected events and the normal and somewhat unpredictable cycle of admission and discharge, it can be hard to get them in the same place when they’re in shape to play.

This makes the moments any of the children are together all the more precious. It is important for them to meet and know each other; it gives them a social life at the hospital outside of the adults who take care of them. As parents, we can believe that Colin’s childhood progresses in lock step with his unstoppable resilience.