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

September 7, 2009

Chemo Done for the Week

Colin’s done with chemo for this week!┬áSunday afternoon, he had a one-hour IV infusion of cyclophosphamide. The infusion had to be stopped mid-stream because his face swelled alarmingly. The doctors ordered up additional Benadryl (he is still receiving this on a regular schedule to help with nausea) and finished up the infusion when the swelling had subsided.

The nausea seemed to be breaking through Colin’s prophylactic regimen, so we gave him Ativan at bedtime with the hopes that it would make him feel better and help him sleep. We also need to keep up on aggressive oral suctioning when he feels nauseated because he pools secretions a lot and overflow gets into the trach. The more we suction the mouth, the less goes down his throat.

They tell us that reactions such as the one he experienced during chemo today are not unheard of, but we am not sure how we will manage this for the next round. More than likely, he will be closely monitored during the infusion if he has a repeat performance.

The nurse suspected it might have been fluid overload. Regardless whether it was the cause of the reaction, he certainly has a lot of fluids in him. He also got another shot of Lasix to help flush his system. As always, he responded well to that drug and is keeping everybody busy with diaper changing.

The diaper rash hasn’t disappeared but it also hasn’t gotten any worse (possibly better). It’s hard to make a detailed exam without removing all of the protective cream and potentially damaging the areas that are healing. Right now, we’re leaving well enough alone. The diarrhea hasn’t stopped, but it’s become much less frequent and they are looking at the possibility of giving him Questran again.

One of the oncologists was hired specifically to develop a program to enhance comfort measures and is interested in incorporating methods that help for children who don’t respond to the front line of treatment for uncomfortable side effects of chemo. For the diarrhea, we have suggested that he speak with Dr. Levy in New York, who famously introduced us to Questran in the butt balm and later to improve Colin’s plumbing problems.

Speaking of plumbing problems, we had a minor backup at the Target House. What a reminder of the mundane issues of life that persist regardless of what else is going on! But fortunately, after we shut the water off to the toilet, the problem seemed to clear up on its own. We immediately thereafter discovered that what we thought was a toilet brush was really a plunger. Well, we’ll know for next time.

In our defense on the toilet brush/plunger issue, they do have somebody clean the bathroom once a week, which is quite a lovely luxury here. They also do weekly inspections to make sure families keep up on everything else and also that the apartment’s HEPA filtration system is operating properly.

Downstairs at Target House, they have a nifty tabletop computer gizmo with a touchscreen and a number of cool applications. There is a mapping tool with locations such as Target House and St. Jude plugged in already. There are also several games and amusements, both innovative ones and classic games.

Aidan has been enjoying the checkers and chess, though his understanding of the latter is extremely limited. Even so, today, he said, “I want to play cheese.”

At first, this seemed like a cutsey way of asking for a snack, but then it became clear that he wanted to play the game CHESS on the computer, not eat CHEESE. His mispronunciation is a symptom of his misreading of the word the first time and failure to integrate a gentle correction.

Even for somebody who doesn’t understand the game, the operation of the board is very cool. It can be resized and rotated easily and potential moves for either game can show up on the board, making it possible for novice players like Aidan to give it a go.

As a holiday, Monday will be slow at St. Jude. Over the weekend, we have noticed uncharacteristic supply problems and it seems like they did not go into the weekend in good shape (we discovered that the woman who is responsible for sending up supplies on the weekend has gotten chewed out although it was not her fault and she is only dealing with the situation she was left with by her predecessors. We had problems getting more suction catheters for Colin’s trach, which is alarming at best (we need to use a fresh kit every time because their policy is to suction the trach as if it were sterile).

After some hand wringing, the trachs came just as the humidivents had in the past: in a vast and overwhelming flood. We have an enormous bag of them now. At times, Colin only needs to be suctioned a few times a day, but at others we need a lot. We certainly will go through the bag of catheters at some point, if not immediately.

We also found out that our night nurse is a strong advocate of the Neotech Little Sucker catheter we had used at NYU. Between the two of us, we are hoping to get them to relent and begin stocking them. In the meantime, we have a new suction device that is really an NG tube (it even has a port for delivering medications!), but the material is softer than the suction catheters. We just cut the end down because it loses suction otherwise (it is very long).

Colin often holds a suction catheter in his hand, which creates some confusion bedside as to what device is really in play. He is using his hands quite a bit more and absolutely has to have something in the left hand — we have found that he pulls his trach collar off when it is hooked up (it provides humidified air to his trach and is always hooked up at night and occasionally during the day when we think he needs it rather than the humidivents).

He as also resumed grabbing at people’s faces, finding it extremely funny to poke eyes and stick his little fingers in nostrils. This is an activity he used to delight in before and has evidently lost none of its appeal. We just hope he doesn’t persist in doing this with the staff here, though we surmise that they won’t mind terribly if he does.

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