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

December 22, 2009

Time for the ANC Dance

Well, today was Colin’s No Mo’ Chemo party, but for some reason, the chemo didn’t put on its listening ears. For one thing, Colin has been vomiting again, though not horrifically. It’s just enough to knock him down a few times a day. For another, his ANC is still 0, not a huge surprise but with no other indications that his counts will be rising soon.

Usually, there are some hints that neutrophils are on their way, typically a rise in the overall white cell count or the appearance of monocytes. Neither has happened yet but has happened before for Colin. We know him well enough to not expect anything definite, but we realize that the chances of our remaining here for Christmas creep higher and higher.

As for the vomiting, Dr. DeWire thinks this is really (really) delayed effects from the cisplatin. I wonder if he’s got a bit of a viral funk from somewhere, but that’s not a home run theory by any means. The bottom line is that it’s not very concerning, since the output is normal and not excessive and we are generally able to manage him.

The tough part about the ANC being low is that he obviously feels like crap. Or, as they say here in the south, he looks puny. If we imagine that he feels like he’s got the flu and is probably aching in his bones with the effort of making more blood cells, no wonder he’s down for the count.

The timing was a little unfortunate for the party. He had been asleep and was still groggy, and we trotted him back to the room when he started vomiting very pathetically inside his mask (with a low ANC, even though he breathes through his trach, he is supposed to wear a mask).

Lights, Cameras, Blurp!

The film crew from ALSAC was here adding to its collection of Colin’s moments at St. Jude. If you watch the fundraising infomercials, you are sure to see one of these parties depicted. They throw confetti at the patient, the staff signs a t-shirt and a little cardboard sign, and they sing a pretty much unintelligible song that goes to the Oscar Mayer wiener tune.

It’s a very nice celebration of the end of something very unpleasant, but it definitely meant more to us than him and I did feel guilty dragging him out there to be happy and thankful when he was not feeling his best. He wasn’t absolutely laid out flat yet also not his usual perky self.

Dad also brought a CD with various Pixar songs and we sang “You’ve Got a Friend in Me” from Toy Story. The lyrics seem particularly fitting to Colin’s situation, so it seemed appropriate to force everybody to sing along.


Colin’s survival through chemo seems almost a miracle, given the various twists and turns of fate along the way. For him to look as wonderful as he does now is tremendous and inspiring. Especially for the inpatient staff that shepherded him through this experience, many of the other children who spend so much time here do not experience the same kind of trajectory.

Colin has become a child of St. Jude not just by being a patient here but by being embraced by the staff as a mascot of sorts. We were amused to find out that they call him “CHT” for his initials, adding to the long list of nicknames he has acquired during his life, starting with B.C. for “Baby Colin,” which Aidan called him from the beginning.

Accelerated MRI Schedule

Although our doctors did not make the party itself, Dr. Gajjar stopped by to chat about Colin (he demurred on the pizza and cake). He said it was too bad we can’t do his MRI early, since his ANC is low. Why would that prevent us from doing an MRI? Oh, because if he spikes a fever, they won’t run it.

Colin is already on a broad-spectrum antibiotic and two anti-fungal agents. What is going to break through that? Dr. Gajjar considered it for a second, then suggested that we move the MRI to Thursday, since the three machines are wide open; nobody wants to have scans the day before Christmas.

The rationale is to get the two other doctors whose opinions weigh heavily in Colin’s upcoming tumor board case to get a peek inside our darling boy’s head before they go on vacation. That way, they will be able to have ruminated at length rather than rushing to a hasty conclusion in January when tumor board meets again.

The reason people avoid pre-event scans is to delay bad news. Although good news is a gift, anything else can weigh on the mind. In our case, the risk is relatively low, as his scan two months ago looked good, and the gain is relatively high.

If the results are obvious and Colin neither absolutely does or does not need surgery, we will know by Christmas and be able to plan out accordingly. Otherwise, we end up in the same gray area we would be in next Monday when it was originally scheduled.

Given the tumor’s behavior so far, a very very bad scan showing wildfire growth seems remotely possible at best. It wasn’t something I even asked Dr. Gajjar, but I doubt he would say much different. As we know, we are reaching one of the most momentous decisions in Colin’s case, and we want all of the parties giving us their best and most considered opinions.

Colin is now on the MRI schedule for early Thursday, and we will doubtless get a look at the scan in the afternoon with the understanding that the final analysis of Colin’s case will go to the tumor board. Thus, we may have “news” on Thursday, but it is most likely to be not especially newsworthy.

In the meantime, it is time for the ANC dance. We are already giving Colin medicine to spur his bone marrow into action (G-CSF). In the absence of more productive means, there is the famous ANC dance that I think is interpretive more than structured and is meant to coax the neutrophils out of hiding. Dance away!

7 Comments »

  1. ((( dancing )))
    Good luck Colin – Keep fighting!!
    Can’t wait to see some footage on the commercials

    Comment by bjmeola@att.net — December 22, 2009 @ 7:18 am

  2. May the landing from this run be softer than many in the past!

    Yes, dance across the plate….the ball has gone way up into the center-field stands! We’re wicha!

    Grandpa

    Comment by Dick Hayward — December 22, 2009 @ 8:19 am

  3. sending our best vibes & hugs!! you are on john and my mind alot. Its nice to see Colin looking so great and leaning out of his bed!! he is growing by the minute it looks like!

    hope he perks up soon and you guys get out of there for christmas oxoxox

    Comment by lindsay — December 22, 2009 @ 9:58 am

  4. Lots of love to everyone. I can’t wait until CHT is eating pizza and dancing! Heidi is coming with some goodies for the kids.
    Love, Diana

    Comment by dinetzer — December 22, 2009 @ 11:05 am

  5. Dear Colin,
    Ask the Dr’s if the antibiotic (specifically flagyl) could cause this pukesville train? Auntie Bev had the same and that was the cause? It’s kind of well known for that side effect. Keeping you in my prayers.
    Love, Cousin Mary

    Comment by cousin mary — December 24, 2009 @ 2:55 pm

  6. Ian’s New Year’s Day FB pics are most heart-Warming. Our guy looks like a miracle man! You are and ever will be in my heart, mind and soul’s will. We’re all riding on the surface of this momentous curve ball…heading towards The Plate!

    Pop

    Comment by Dick Hayward — January 1, 2010 @ 9:34 pm

  7. anyone know how Colin is doing?? or when the surgery is scheduled for?

    Comment by bjmeola@att.net — January 4, 2010 @ 9:49 am

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