Steven and Sean on the Polar Bear Cam
Steven and Sean on the Polar Bear Cam

Monday, April 26, 2004

Cycle 4, Day +19: Love, Hate, Catheters, and Faith

Today we officially were officially discharged from the bone marrow transplant clinic and sent back to the neuro-oncology clinic, where Dr. Gajjar's nurse greeted Steven with a hug (Dr. Gajjar is out of town until Wednesday).

This is Steven's week of tests, if all goes well, he will graduate.

  • Test 1: MRI of the brain on Wednesday
  • Test 2: MRI of the spine on Thursday
  • Test 3: Lumbar puncture on Friday

If Steven passes these tests, he gets to graduate and go home.

Then, there's the matter of his central line, the double-lumen Hickman catheter that goes into a vein near his heart and protrudes from the center of his chest.

We've got this love-hate relationship going with his line. We love the fact that having the line means that Steven doesn't need to be stuck with needles to draw blood or to give IV fluids and medications. We love the fact that we can administer IV medications at home instead of being in the hospital. We love the fact that the line has saved him from immeasurable stress due to needle sticks. The line has done a good job so far.

We hate the fact that having the line means we have to flush it daily, change the caps and the dressing three times a week. We hate the fact that Steven can't be submerged in water while he has the line, so he can't swim. We hate the fact that his line is a possible source of infection, that if he gets a fever, any fever, he will probably have to get IV antibiotics in the hospital for 2 or 3 days. We hate the fact that if he gets into a major wrestling match with his brother, the line could possibly get pulled out.

The doctor wants us to leave the line in until October, when he returns to Memphis for a major workup that in addition to MRI's/lumbar puncture will also involve staying 1 or 2 nights at Le Bonheur, a hospital nearby to St. Jude, for an endocrine workup.

The endocrine workup will involve drawing blood every hour or so. Without a central line, Steven will need to get an IV, maybe with five people holding him down while he screams, or maybe a miracle will happen and somehow he'll be calm.

Still, we want the line out. We want him to be able to swim and wrestle with his brother. We want his life to be as "normal" as possible, whatever that means for us now.

Even if we leave the line in until October, if things go well, they'll take it out and he'll still have to deal with the needles and IV's eventually, its a postponement, not a solution.

Nothing is ever for certain, we've learned that the hard way, but we need to proceed now as though we believe he is cured, anything else won't change the eventual outcome and will take away from his and our quality of life today.

So, given that Wednesday's MRI scans are favorable, Thursday we go and argue our case with Dr. Gajjar, his neuro-oncologist.

At the end of treatment, taking the line out is our first leap of faith.

- Kathleen

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