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

August 18, 2009

Five Millimeters

Colin had a great day today. He sat up several times and is getting more opportunity to hold his head erect (more or less). We had speech therapy and physical therapy visit today, and we have asked that the swallow specialist return because Colin is definitely clearing his secretions better from his throat, suggesting that his swallowing has improved.

This morning, Colin held a bell shaker and shook it gently, just enough to make a tiny noise. This activity was so encouraging after so many weeks of ups and downs. It is also accompanied by greater expression of frustration. He can’t stand the mesh band that holds the dressing onto the back of his head. Under the best of circumstances, that doesn’t stay in place well, much less with Colin tugging away at the band. Invariably, it ends up over his eyes and causing even more frustration.

Unfortunately, the diarrhea, which seemed to be improving early in the morning, soon took a turn for the worse. He is also experiencing quasi-febrile periods, where his temperature goes up a bit (not enough to constitute a worrisome fever) and his cheeks get rosy. However, he soon returns to normal.

Infectious Disease said that the latest stool culture tested positive for C. Diff (this was anticipated anyway) and, because he is clinically showing symptoms of continued infection, they are putting him on a different oral antibiotic. This is frustrating but, if it solves the problem, it’s worth it.

Yesterday, our nurse and the nurse manager took to scrubbing down Colin’s room with bleach to make sure that he is not infecting himself. Since we’ve been in the same room for a while, it’s possible that he is giving himself additional rounds of C. Diff.

At this point, we’re prepared to sacrifice chickens if it will keep the diarrhea demons away. Sometimes, this is hard to measure. His tush has at least not worsened and is perhaps a bit better. It isn’t so raw that we can’t diaper him, so he is able to sit on Mom’s lap in a chair without generating unbearable anxiety.

As for the treatment plan, we determined that the controversy surrounds the residual tumor piece, that 5 mm x 5 mm x 2 mm morsel remaining on the brain stem. Although we know it is there because it is mentioned in Dr. Wisoff’s report from the operation, it does not show up on the latest scan.

Clinical studies have shown that the outcome is worse for patients who do not have residual treated before radiation. The best study uses 5 mm as the dividing line (5 mm and above gets chemo before radiation), and this is the reported magnitude of the morsel.

So, do we treat it as if it were on the fat side or the thin side of 5 mm? How did they measure it in the study? Scans or operation reports?

Dr. Finlay recommends using a known chemo protocol before radiation, based on our explanation of the major points of Colin’s case. He strongly disrecommends Head Start, the protocol that he is in charge of (at least finally we have consensus on that point!).

Dr. Gardner is trying to get us on the list for proton therapy, which is no mean feat given the high demand for protons. However, we are waiting for St. Jude to come back to us with their official opinion of the latest MRI and whether that affects their opinion.

If they do not recommend chemo, we would presumably scurry up to Boston as soon as possible. Otherwise, we have to decide whether we should go to St. Jude for chemo. Their study is different from the one recommended by Dr. Finlay, although it uses all of the same medications (and then some). It’s not clear to us how much they differ from each other.

Regardless, rehab is critical for Colin, who is just now starting to gain the awareness, stamina and coordination to start doing things. The neurosurgeons are recommending the delay of adjuvant therapy, whether chemo or radiation, until the incision on the back of his head heals completely. While this has been estimated at two or three weeks, it is possible that it will heal up sooner, and we need to start him up as quickly as possible with something to zap the tumor.

Colin’s vital signs have normalized tremendously. Changing to a denser feed has also reduced the impact of fluid imbalance. His blood pressure has become normal again, and he does not look bloated any more. Although we thought it was crazy to put him on a commercial flight, that might actually be feasible much sooner than we had anticipated.

So many things are coming together for Colin, yet it is still difficult to hold onto the good news and let go of the fear that his situation could abruptly make an about-face. Perhaps it is part of the process of waiting to make a decision, which in this case partly has to do with better understanding the risks and ramifications of one action over another.

The final answer will come soon enough. The Mass General tumor board meets tomorrow and will give its recommendation; similarly, St. Jude now has the new scans and will proffer its institutional opinion in short order. In the meantime, waiting will consist of rehab, followed by more rehab. And, hopefully, a full recovery of the land down under!

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