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

November 8, 2009

Chemo Vacation

Colin is taking a little chemo vacation, though it may be more theoretical than real. Of course, we don’t want him to actually take a break because the whole point of being here is for him to control the cancer with drugs. However, the endocarditis has forced us to put the scheduled Day 8 and Day 9 of chemo on hold.

The next set of chemo drugs is the hardest on Colin’s immune system, and Dr. Gajjar was out of town when Colin spiked another fever early Thursday morning. So far, the blood culture drawn then hasn’t grown out anything. In fact, we’ve continued to have negative cultures since the one that was positive when the PICC line was inserted.

On Friday, we were lucky enough to have Dr. Joshi #1 and the Infectious Disease fellow in the room at the same time and grilled them about the endocarditis. The good news is that, through the luck of catheter positioning, the tip of the catheter was aiming at the wall of the heart rather than the valve itself.

Vegetation on the valve would pretty much necessitate open heart surgery, since it would create significant symptoms and, eventually, heart failure. But fungal infections are not easy to remove, since the margins are not clear; therefore, surgery is not a terrific option.

On Monday, Dr. Joshi #1 will do another trans-thoracic echocardiogram (TTE) to take a look at the vegetation. Although this test did not reveal the vegetation originally, now that he knows what to look for and where (and not to get distracted by the catheter shell), he believes he will be able to monitor the vegetation less invasively than through the trans-esophogeal echo (TEE).

We have our fingers crossed on this point, since the TEE can’t be done while Colin is neutropenic. The TTE also doesn’t require sedation unless Colin refuses to cooperate entirely, which hasn’t happened yet.

In light of the recent fever, Dr. Gajjar asked to hold chemo until he is in town and can delve into the issue. Since his next chemo is due on Monday, it is possible that his chemo vacation would be insubstantial if it happens at all. Even so, the knowledge of it creates a feeling of suspension and, for whatever reason, a palpable sense that Colin is more normal at the moment.

The impending testing increases the rationale for the delay, since assessing the condition of the vegetation is important. We are hoping it is smaller and thus demonstrating that the anti-fungal therapy is working. If it is bigger, then we will have to start having the unwelcome discussions about surgery.

In the meantime, Infectious Disease expanded the anti-fungal assault with a second medication. The idea is to further bathe the vegetation with medication. We now have the sensitivity testing back on the candida albicans, which is in fact sensitive to pretty much the entire arsenal of drugs.

So, if you’re going to get fungal endocarditis, you should do it like Colin did: not on the valve with a fungus that is highly sensitive to treatment.

We will not entertain discussions of installation of a new permanent catheter until at least two weeks of clear cultures, though we also found out that they monitor them for 28 days just to be sure. We only hope that the current PICC will last long enough. It is torture for Colin and extremely difficult to deal with, since it is on his a mobile arm that tends to get even more mobile when one is messing with the PICC. Dressing changes are excruciating though fortunately endured only twice a week.

Over the weekend, Colin is still getting tested for his methotrexate levels (higher than the average bear) for leucovorin treatment. This also means that he wouldn’t get discharged from the hospital. However, we were able to get a day pass for Saturday with a presumed repeat on Sunday.

We arranged to horn in on a group play date on Mud Island with one of Colin’s playmates from school, who goes there with other local children. It was a great opportunity to enjoy the beautiful weather outside, attempt to satisfy Aidan’s desire for play time with peers, and get Colin playing somewhere besides the hospital play room.

Colin had a great time playing with rocks and trucks. Eyeing some food set out for the other children, he tried to stand up and walk over. We helped him get up and take a few steps, discovering how strongly the motivation for food drives him.

This week, Colin started “lollipop therapy” under the auspices of speech therapy. We can give him large lollipops to hold to his mouth and presumably attempt to lick. This isn’t as satisfying as he would like but is better than nothing.

One encouraging sign is that Colin’s lip movement has improved immensely, though it’s hard to attribute this directly to the lollipop therapy. He was always prone to a bit of lip curl, pouting, or pursing. Even before any mention of Graceland, he made an Elvis-like snarl. Seeing this reemerge is clinically exciting and just delightful.

We are getting sprung from the coop Sunday for the bulk of the day and can even administer the micofungin while we are out through the so-called “fungus ball.” Colin has also been inching up on his feeds as they also gradually decrease the level of fluids, so he is now at his “goal” rate. With his electrolyte balance in good shape (phew!), we are encouraged to see how well he does off of chemo.

This round of methotrexate has been the smoothest so far with no issues to speak of. He has had exactly zero bouts of vomiting and nausea. Sometimes, he makes a horrific sound in his throat that initially sounds like emesis, but it sort of has the opposite effect and the secretions disappear. Today, he nodded his head when I asked if he had swallowed.

If Colin is swallowing, it is infrequently with great difficulty. This would be far from life-sustaining but still makes us feel better about the whole swallowing situation. As much as we believe that this function will recover, it is also difficult to have patience but also feel like improvement is inevitable.

We are anticipating the recovery trajectory following Colin’s various therapies and what we view to be inevitable improvement. However, we are reminded by the possibility that this may not come to pass. This environment, which so heavily leans toward the manufacture of hope, also serves as an acute reminder of the mortality associated with cancer.

There is a tendency among nurses who deal with the death of children to salve their wounds through the vitality of other patients. We have seen this several times, where Colin (even suffering various deficits and his own uncertain future) serves as a ready antidote. It is simultaneously reassuring and chilling, and yet another Post-It note reading, “Carpe Diem.”

Death is inevitable for all of us, but this fact is more apparent when cancer enters the picture. Nevertheless, I don’t think that this affects our daily lives, or at least one should take pains to make sure it shouldn’t. We are far enough from the days of desparation to know that this philosophy is more a luxury than a necessity or, perhaps more germanely, a¬†challenging exercise.

With luck (and myriad factors beyond our control), we get many days to practice.

1 Comment »

  1. In the midst of all the medical jargon, explainations etc., it was reassuring to read about Colin’s day of play on Mud Island. And the fact that he wants to eat and even tried to walk is a sign of his indomitable spirit. I hope things work out for Colin to have his chemo on Mon. and keep all of you in my prayers.
    Love, Diana

    Comment by dinetzer — November 8, 2009 @ 6:53 pm

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