Colin Loves Tractors Follow Colin's progress through treatment for a brain tumor

September 16, 2009

On the Upswing

Tuesday morning, we found out that Colin’s immune system has already started to rebound. His ANC, which had been zero the day before, was 500 (in the afternoon, we confirmed that the rise was not an anomaly when it came back at 400)!

This means that Colin should be climbing out of the high risk zone for infection and, hopefully feeling better. At the same time, this improvement can be quite painful as the bone marrow is stimulated to produce more blood cells.

The hemoglobin is higher at 8.8 but not tremendously robust. The doctors say that infection, if there is one, could “eat up” his hemoglobin (no further elaboration on what that means) and his long period of hospitalization and illness could also have an effect.

Because Colin’s platelet count dropped to 48 (the actual figure is x1,000, so 48,000) and is below 50, he needed to receive platelets in order to get chest PT from respiratory therapy. In the afternoon, this figure had shot up to 107 and within the normal range.

During the day, possibly because of Colin’s surging immune system and possibly because of inadequate rest during the night, he was uncomfortable and sleepy looking. He seemed nauseated in the morning, so we gave him Benadryl. Unfortunately, he missed PT as a result.

Despite missing therapies for two days in a row, he has been making up for it on his own. Once again, he perked up in the afternoon and sat up by himself with no propping (just pillows all around to protect him) and was even able to correct himself when he tipped! For the moments that he ended up sunk into a pillow at an odd angle, his half-working face twisted into a smile and we laughed about his awkward situation. His head control is tremendously better and he is mostly holding his head up and in the midline when he sits up.

Colin’s enthusiasm for playing has greatly cheered the staff who have stopped by and seen him. His day nurse for the past several days was our nurse the first day, so she was able to really see the difference.

When he is not exhausted/feeling cruddy, Colin is responsive and attentive. He turns his head and body to people who are talking to him and happily dispenses high-fives. We have even gotten him to try clapping, which is difficult to coordinate.

One of the most encouraging developments is Colin’s tongue, which he can now stick out with considerable effort. We often see him working his tongue in his mouth. For some reason, it makes him look like a Moray eel when he does this. In addition, he moved his lips on the left side of his face in an attempt to sing!

Over on Mud Island, Aidan is hard at work at the Grand Array, a big milestone in the Montessori primary classroom. The decision to bring him here and keep him in a Montessori environment seems to have worked out well.

Unfortunately, we also found out that one of Aidan’s new buddies has “the flu,” which implies H1N1. We are keeping a vigilant eye on him for symptoms, though so far he only coughs a bit in the morning, which may be more related to dust mites than anything.

The other day, we were examining a fascinating large dead insect when Aidan exclaimed, “The tiny bug is FEASTing on the huge bug.” Although written down it doesn’t seem as cute as it was at the time, but it is always delightful to be reminded of how Aidan continues to develop and grow along a normal curve.

With Colin, the milestones we focus on are ones that he had already achieved — or ones, like eating, that he was born with. In many ways, it is like having an infant again but without the help of a normal development chart.

There are many other children on the same protocol who are here, and so many of them are normal, minus the alopecia and surgery scars. It is amazing to watch them run and squirm. There is a little boy who is 16 months old and his mother totes him around in one arm, pushing the IV pole in the other arm. The boy is quite lively and otherwise healthy seeming, twisting in her arms and reaching for the fridge. We surmise that he is here for the same chemo protocol, though the mother does not know what protocol he is on (she refused to be in the room when her husband signed the consent, so she claims total ignorance as to the protocol itself and the possibility of radiation down the road) and says that she will not utter the name of his cancer.

Everybody handles this kind of situation differently, and none of us is in a position to judge her reaction, but it certainly makes it difficult to have a conversation with somebody when the thing you most obviously have in common is cancer. If nothing else, it is ample demonstration that every family and every parent is different. In her case, she has four other children, so the logistics of managing treatment for one child while four others must chug along in their lives are unimaginable to us. It is no surprise that she looks worn down and overwhelmed.

Having Aidan close by and attempting to provide a relatively normal existence for him is a luxury. We are limited at Target House to having four humans in the apartment at any given time; thus, it would be impossible to live there as a family if we had a third child. Those with means could rent an apartment separately, and probably some people elect to do that, though it is easy to guess that they would be the minority.

The importance of having Aidan around is not just a matter of convenience, but it is also important for Colin. Aidan is good medicine for Colin (and us!) with his goofy energy and sweetness. We have trained him to kiss Colin on the head (rather than anywhere closer to the mouth) and he washes his hands assiduously to protect Colin. Although he doesn’t want to spend a lot of time in the room, he is loving with Colin and performs a high rate of silly antics per minute. At this age, for both of them, having contact through the phone alone would be grossly inadequate.

To the point of having the boys together, there is a chance that we will leave the hospital tomorrow (Wednesday) or the next day! This was quite a surprise because we had been led to believe that Colin would remain inpatient through the weekend. However, we sense that both the need for the bed and Colin’s sudden improvement (more the ANC than neurological) are playing a role in that push. If we do leave tomorrow, we will be only a week off schedule.

There is a big secret event about which we have been pointedly instructed to not discuss so as not to induce family members to suddenly appear in Memphis to rub elbows with celebrities. We feel we can refer obliquely to the big secret event (the staff is also theoretically in the dark, though only the utterly blind could have failed to have noticed a very large tent structure consuming a good chunk of the main parking lot) only because we are fairly certain that nobody will truck on down here. Seriously, it wouldn’t be worth it. At least, it’s not anybody I would drive far to see (no offense to the nameless and generous celebrities!).

Suffice it to say that we hope it will both be fun for the boys though disruptive to our lifestyle as we will not be able to park the car at Target House for the duration (Thursday and Friday). This is less an issue for Colin getting to the hospital (the shuttle is convenient enough) than it is for Aidan getting to school.

Aidan already eschewed a chance to meet Paula Abdul in New York, so it will be interesting to see how he responds this time. Colin of course is completely immune to fame as an attractant but will love the activity of all kinds of people around, assuming that his counts allow this impending adventure.

More to follow… and we hope that we have not (with good humor at least) violated the injunction imposed on us. 😉

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