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

September 5, 2009

First Chemo, Then Home

Colin has an official discharge date: Wednesday. However, in order to come home, he has to go through two days of hard chemotherapy (a shot of vincristine followed by a cisplatin IV on Saturday; a cyclophosphamide IV on Sunday). While the immediate effects will come and go before he leaves, it likely will take a week or so before his immune system really feels the hit.

The staff at St. Jude has been working hard to make sure that we are prepared to take care of Colin, and he has been working hard at rehab! He loves his play dates and has been improving by leaps and bounds. On Thursday, he spontaneously reached for a plastic coin with his right hand (the weak one). It doesn’t work well, but even so his body seemed to remember that it was his dominant hand.

Colin is definitely using his left hand and fingers much more and sometimes just enjoys watching them move, much like a baby discovering the use of its hands. The parallel is apt, since his brain is still learning and making new connections. This allows him to fly through PT much more quickly than an adult.

Another encouraging sign is evidence of more movement in his face (not the weak side). He has had a very flat affect, especially since the second neurosurgery. Now, we see him moving his eyebrows quite a bit. He used to be prone to (very charming) assymetrical facial expressions, generally showing more movement on the right side. It remains to be seen whether this will switch or whether the right side will recover fully.

It is likely that there is movement on the right side of Colin’s face that is hard to see. His cheeks are very thick from the steroid-induced Cushing’s disease, so there is a lot of material to mask subtle movement!

The speech therapist wants to move as quickly as possible to a Passy-Muir valve on Colin’s trach, but he far from that, since there is still inflation on the cuff. We have been suctioning the trach much less over the past two days, so the last cuff adjustment seems to have really done the trick.

As Colin has improved, his demands have increased. He wants to go outside quite a bit and asks to watch TV. Today, he wanted a blanket and pointed at the cabinet where the linens are kept. It took us a while to figure this out because his pointing finger seems not very specific, but everybody is delighted to see this change, even people who haven’t known him.

We had seen similar behavior after the second surgery but before the series of complications. This really underscores the impact of these medical setbacks.

Colin’s diarrhea is definitely not related to C. Diff and, because he is going to be neutropenic soon, the doctors are taking advantage of this opportunity to give him lactobacillus to strengthen his intestinal flora. This strategy had been rejected in New York because of his steroid-weakened immune system. Whether they are less concerned about that relative to the benefit of the probiotics or they feel that the steroid taper has lessened his infection susceptibility we are not sure.

They don’t typically use lactobacillus for diarrhea, and this was presented to us as an oddball suggestion. The doctors were quite surprised when we responded enthusiastically and recommended a brand of easily available and easily delivered probiotic that we had learned about in New York.

Colin is also taking immodium now, since his diarrhea seems unrelated to an infection. However, this isn’t completely effective so far, though it’s certainly improved matters. The other thought is that one of the chemo drugs, which can cause constipation, will reverse his current difficulties.

On Thursday, Colin received packed red blood cells to increase his hemoglobin, which had fallen below 8.0 and thus below the lower limit where they can give him chemo. We also expected the transfusion to perk him up, since anemia can cause fatigue.

However, on Friday morning we ended up taking Colin for a CT scan because he complained of a headache, seemed irritable and lethargic, and the pseudomeningocele had become more boggy. None of these changes was individually dramatic, but in combination it indicated the need to make sure that the shunt had not malfunctioned.

Indeed, his head has not yet exploded, but they concluded that the increase in fluids had also increased the intracranial pressure. Colin got a shot of diuretics and peed like crazy.

We finally got a chance to look at Colin’s imaging, particularly the latest MRI performed here. Even to a layman, the image is much more clear than anything we have seen before. The area where there is still residual tumor does not appear to have changed (in a good way!) and they have confirmed that his spine is clear. While this does not represent any new information, it confirms what we had already known and creates a baseline for them to compare over time.

Aidan completed his first week at school with flying colors. He made new friends and did a terrific job being helpful at home (he asked whether holding the keys or the garbage was more helpful when we made our way to the garbage chute). His new friends are John Steven, Aidan, Trip(p?), a boy who is as tall as the bathroom doors (these are not full-height doors!), and a girl who doesn’t speak English but does speak English (i.e. non-native speaker of English). He needs to work on his skills at remembering names, but we’ll leave that for another week.

Of course, Aidan misses his own school, but this is a good proxy and a very nice environment for all of us. Despite the purported separation from St. Jude, connections to the hospital are inevitable. The outdoor educator’s wife is a mural painter (we met her today working on “summer”). Several children’s parents work at St. Jude, including at least one doctor. One student is a patient.

Thus, it almost seems impossible that our stamp as a St. Jude family does not glow radioactively on us when we go out. But far enough outside the realm of the hospital environment, even our Yankee-ness or newness don’t give us away, as there are enough transplants down here to camoflage us. With Colin in tow, especially as he loses his hair, there will be no hiding our identity.

There is a certain comfort to being able to circulate in society as normal people. Colin doesn’t get that luxury at all and even at his age seems sensitive to how different he is from other children — and how different he is from his younger pre-operative self.

We feel that the reminders of his earlier abilities are motivational rather than counterproductive at this point, since he does improve steadily. It is hard to promise specific goals, but we do not doubt that he will walk and talk again. The glimmers of facial expressions remind us that Colin is waiting to emerge from the cocoon of neurological deficits, though what new form he will assume is unknowable.

Come out, little butterfly!

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