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

October 24, 2009

Colin’s MRI Results… and so Much More

Colin enjoyed three nights on the prowl (i.e. outpatient) before a planned admission on Friday for chemo to start on Saturday. He enjoyed his time out on the town, and it was great once again to have the family in one place. This was also our trial run of the new home health agency, which sent a nurse (R.N. this time) for eight hours overnight.

All in all, it was exhausting but great. Colin was still on TPN, so we continued to “feed” him through his IV, although we attempted to reintegrate tube feedings with disastrous results. Managing diarrhea while outpatient is so much harder than it is while we are in the hospital; he ended up stewing in it and we had a terrific panic about his skin condition (bleeding!) but prompt and aggressive action in the form of direct application of oxygen and a few hours exposed to air completely resolved the problem. Phew!

Aidan enjoyed having his brother around and we see how good it is for him to see Colin doing so well. Colin’s overall improvements gave everyone a lot of hope about his two-month MRI, which is scheduled for the mid-stream of chemotherapy.

Colin went in at 6:45 am for sedation for an 8:00 am MRI. The procedure was scheduled to be followed immediately by a lumbar puncture, which we were told might be cancelled if there were a contraindicating radiological finding. When they told us that the LP would not take place, we had a moment of panic, but it turns out that Dr. Gajjar simply did not want to expose Colin to the risk of shunt failure resulting from the LP. It goes to show that you can’t make anything of these threads of information and there’s no use in panicking.

We met with Dr. Gajjar to discuss the results of the MRI and our continued education in the art of interpreting imaging. In short, the news we got was as good as one could expect, yet unclear enough to give us pause.

First, the things we know about the tumor: no additional growth and no spinal metastases. This is terrific, especially because the aggressiveness of the tumor and the long-held opinion while we were in New York that he had spinal mets have made us very nervous about that possibility. Part of the hope with chemotherapy is that it will assault any free-floating cells that could incite metastasis.

Second, what we know of Colin’s brain: the hydrocephalus is resolving nicely and his cerebellum is plumping back out. That certainly isn’t a technical term, but it’s clear (even to us!) on the imaging that the cerebellum, formerly compressed by hydrocephalus and deformed by the tumor, is regaining its former shape.

Third, the suspected tumor remnant: stable, and of questionable nature. Upon further discussion with Dr. Gajjar, we do know that this hasn’t changed in a way that would indicate that this is actually a hunk of tumor that is growing. Thus, we have the green light to push ahead with chemo. What we don’t know is whether this will ultimately (i.e. at the end of chemo) call for more surgery. The judgement will be a group effort that heavily involves Dr. Boop as well as input from Dr. Wisoff and his surgical impression.

As we look at the crescent of enhancement around the anterior and right of Colin’s brain stem, it’s clearly much much bigger than the fragment of tumor (5mm x 5mm x 2mm) that Dr. Wisoff reported leaving. Because Dr. Wisoff is a practiced surgeon with experience delving into this region of the brain, his opinion is especially important, Dr. Gajjar said. Also, because tumors like this don’t come around every day, he expects that Dr. Wisoff will continue to be able to provide substantive information beyond what is written in the surgical notes.

This news is certainly encouraging yet we are unable to fall into a relieved puddle. We have to remind ourselves that there is much worse information that we could have received. That said, our understanding is that, following a good resection, regrowth typically takes longer to emerge.

Maybe the nexus of our concern is the possibility of another surgery (ugh!), especially after Colin has made such headway thus far, pun intended. Even when he’s feeling yucky, his whole body moves, and he is threatening to lurch out of his wheelchair at times. What a contrast with the sack of potatoes that wheeled through the front door of the hospital on a stretcher!

However, these are all questions that cannot be addressed until the end of chemo and the final scan. Another unusual aspect to the process of finding out about his latest MRI was that we were being followed by a film crew from ALSAC, the fundraising arm of St. Jude. They are tracking Colin’s case and spent a good chunk of Thursday recording his therapy and treatment. Friday was much more momentous, of course, and they were up with us at 7:00 capturing the sleepy beginnings of the day.

Interestingly, the nurse who physically transferred Colin into the MRI is a former patient. They plan on doing something special on him and his experience treating children here. We got to see footage of Colin getting his scan, which we have never seen before, and they have promised to let us have copies of everything.

The exact purpose of this documentation is unclear. They have made some pieces for fundraising, some available on YouTube, in the past. However, they are evidently getting greater access in our case than in some of the others they have done. Although it’s strange to have a reality TV component added to Colin’s treatment, especially when we’re asking real medical questions about treatment, it’s easy enough to forget at times. One time it was impossible to avoid was when we were talking with Dr. Gajjar in the Star Trek room (multi-monitor imaging room, very cool) and I said, “So, this is good.” Apparently, they didn’t capture it on film and it was an important piece of the narrative, so I had to repeat the question about 10 minutes later, with Dr. Gajjar responding again and, like me, probably trying hard to make it sound natural (it’s a fair guess that neither of us excelled in high school drama). It took a moment for me to remember my original tone, which was not very affirmative and somewhat questioning.

Hello, fungemia… I didn’t expect to run into you again. Immediately after meeting with Dr. Gajjar, as we strategized the process of waiting to get admitted for chemo to start on Saturday, Dad noticed that Colin was warm and rosy, so we went back to Assessment and Triage to get his temperature. The hope was that his temperature spike was the result of a two-thigh flu vaccination on Thursday (the nurses double-teamed him to reduce the impact of the insult), but the fever was ultimately too high and, on Saturday morning, Infectious Disease’s CO2 alarms went off announcing that his blood cultured something: fungus, assumed to be Candida until further notice.

On a side note, Colin received the first shot of H1N1 vaccine, which we are very happy they are able to offer here. He is also participating in a study on his immune response to the vaccine in immuno-compromised children. We’re not sure how this fungemia affects the study but it’s not exactly top-of-mind.

Dr. Gajjar has ordered the removal of the port on Monday. They presented this as a fast action, but for us it seemed fairly delayed. Probably the OR here doesn’t operate on weekends and only worsening of his symptoms would precipitate a trip to Le Bonheur for emergent surgery.

The first question is whether this is a recurrence of the original infection in New York. It’s possible that it has been harbored on a heart valve, although the I.D. doctor said that this can cause a heart murmur and he doesn’t hear anything. They will probably order an echocardiogram anyway to check for that possibility. The only difference, he explained, is the length of treatment, not the course of it.

The second question is what likely caused the infection and how we can reduce the risk factors. The TPN obviously got a hairy eyeball from us, and, though the GI doctor told us that it doesn’t increase line infections, the local I.D. opinion is that it does because of the extremely high glucose levels. This makes perfect sense to us or anybody who has seen the nastiness on the floor that results from dripped TPN solution.

The third question is whether to replace the port or place a Hickman line, which is preferred by protocol. The Hickman line has multiple lumens, so it allows the simultaneous infusion of incompatible drugs at the same time. They use this in younger children partly because kids don’t have a body image issue that would cause them to prefer a more discrete port.

Although the port is pretty much in constant use here, it won’t be once we go for radiation, and it would have been nice to have him deaccessed for weekends and also to provide a convenient vector for establishing quick IV access for sedation during periods when he will not need much IV activity, such as when he receives oral chemo.

This discussion is one that we will have with the team next week, but in the meantime we are focusing on treating Colin. We will also have to install another PIC line or something along those lines to have good venous access for chemo to start. The chemo is obviously being delayed until we get the infection under control and make sure that we have a reliable means of delivering the drugs.

Colin is stable though still febrile. At times, he is playful and he made a mess with markers in such a way that the doctors thought he had horrible bruises (psych!). If he doesn’t get better soon or gets worse, we’ll have to reconsider the port situation.

Although fungemia is serious and needs attention, the I.D. doctor described it as “very manageable,” and we hope that he is right. They don’t get fungemia very often here (a few cases a year), so Colin’s case is very unusual and warrants further examination.

Well, anybody who is familiar with the trajectory of Colin’s care knows that it isn’t unusual at all for him to be an outlier. In fact, we nearly expect it, or at the very least, we aren’t surprised when Colin throws something out of the ordinary our way. All of the kids here with brain tumors (and many other diseases to boot) already hit unlikely odds in the first place. Why stop there?


  1. Holy Moly; Shazam – No wonder you’re swamped with film crews – the kid’s a star – guess he’ll need to join ASCAP.


    Comment by Dick Hayward — October 24, 2009 @ 10:14 pm

  2. I love the new pages. It’s wonderful to see Colin’s face at the top.

    He continues to amaze with his antics and willpower to smile through all of the poking. What terrific support he has.

    We wish you more good news and hope more family time comes often. Home is truly where the heart is and when the whole family can be together, the warmth and love can do amazing things.

    We continue to think of you and wish for healing and recovery.

    -Pam, Jon & Leo

    Comment by pfrost — October 25, 2009 @ 9:45 pm

  3. Any new info from gastroenterology? Too soon to know?

    Comment by Dick Hayward — October 26, 2009 @ 10:34 am

  4. Glad to hear about the MRI results. He has been on my mind constantly and I am continuing to send him white, bright, lights to envelop him and heal. You all are in my thoughts and prayers. Kiyoshi misses Aidan a lot. Thank you for the visit. Hugs, Riye

    Comment by riye_aoki — October 27, 2009 @ 1:02 am

  5. Of course Colin is not going to be “ordinary”, he’s “extrordinary”! And now, he’s a star, too. Let us know how to access the UTube show. It is clear that he has an endearing little personality that attracts everyone who meets him, even under trying circumstances.
    I’m thing about you all and keeping you in my prayers.
    Love, Diana
    P.S. Is it possible to address Dr. Boop with a straight face. I’m even giggling as I write it!

    Comment by dinetzer — October 28, 2009 @ 7:05 pm

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