Week Six

The stay at home was all too brief. It seemed that everything we did Wednesday and Thursday was in preparation of his potentially being readmitted Friday rather than the hoped-for Monday. As a result, none of us really had a chance for extended rest and relaxation. Still, he loved being at home with the dogs, wearing his clothes and sleeping without interruption.

On Friday, once we dug out from the still-falling snow, Deb took him back for his second bone marrow biopsy and lumbar puncture. When Dr. Massaro turned up, she started suggesting that given the adverse weather conditions, rather than potentially being summoned back on Saturday, why doesn’t Robbie just stay and begin round two. Since all his doctors were leaning towards this and only reluctantly allowed us to consider returning Monday, Robbie agreed.

Later, Dr. Massaro admitted she already reserved a room for him the day before. And the room turned out to be 728, right where he was on Tuesday. We’ll be here for, at minimum, the eight days required for round two. If he’s fever-free at that point, he’ll be home pretty quickly and only need to come back if he develops fevers.

This time, though, he was bursting with energy and no sooner was he readmitted than Child Life wheeled in a TV and PS2 set up. Before too long he was jamming on Guitar Hero III, even sharing it with Katie from Child Life. By dinner time, he was already receiving medications to help with the forthcoming side effects as the chemo began.

We’ll know on Monday what they found in the bone marrow but already know the spinal fluid remains leukemia free. Depending upon what they see, we’ll know if a bone marrow transfusion is necessary. If so, it won’t be coming from us. Dr. Massaro turned up later to tell us that neither Kate nor the parents were matches. Should it come to a transfusion, she was very confident that a match will be found.

He endured the first few drugs overnight without incident. Today, he’s a little sore from the procedures and took a nice afternoon nap. So far, so good.

3 comments

  • Kath

    Bob,
    What is Robbie’s blood type and does that make a difference on the bone marrow donation on the off chance that one of us might be a match?
    Kath

  • Rob

    Hi Bob,

    Although, I haven’t seen you in about ten or twelve years, I heard about this rough patch with which you and your family must now contend. I hope Robbie’s treatment is completely successful and the disease goes into full remission.

    Sorry to be a little cryptic, but I’m not comfortable i.d.-ing myself in a public forum, and I can’t find a link on the blog that would allow me to send you a private email. Feel free to email me back, though, when you have the time and the inclination.

    I hope you won’t mind if I address an earlier comment on this thread about the possibility of being a bone marrow match. To anyone contemplating such a donation for Robbie, I would like to respectfully suggest that they consider getting tested now and have their type entered in a national database for potential future matches. If Robbie needs it, (and I certainly hope he doesn’t) it will put him that much closer to finding a compatible donor. But whether Robbie needs it or not, there are many people and many families similarly situated. While the procedure for donating is not pain-free, the risk of any significant or long-term effect is negligible. The first step in the testing procedure is a simple blood sample; and if you subsequently decide you can’t continue the process for a stranger, you are never obligated to do so. Again Bob, I hope you don’t mind my two cents.

    All the best,

    Rob

  • Jeff Linder

    Had myself tested for matches last week.
    My physician offers it as an add-on with usual blood tests, she just draws a little bit extra and sends it along with the rest to the lab.

    There is a cost, mine was $48 which is not covered by insurance, but its the right thing to do.