Prepare the Photon Torpedoes

With the family reunited and Colin enjoying his time out of the hospital, we are getting ready to move on to the next phase of treatment.

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Colin will get an MRI on Friday morning to assess how effectively surgery removed the remaining tumor and come up with a treatment plan.

The radiation oncologist, Dr. Merchant, will have to calculate the appropriate field, adjusting for sensitive structures (cochlea, to protect his hearing on the good left side) or increasing the dosage to residual tumor. They have to manufacture a face mask to hold Colin’s head still so as to reduce variability in the field treated during treatment. Simulations (CT scan and MRI) will take place on Monday and radiation is scheduled to begin the following week.

Compared to chemotherapy, radiation typically has relatively mild short-term side effects. However, radiation is a powerful and potentially perilous therapy. My mother, who grew up in Japan during World War II, finds the very concept of using radiation as a curative medicine horrifying and counter-intuitive. After all, radiation can cause cancer and, indeed, there is a known incidence of secondary cancers in cancer patients treated with radiation (the same is true for chemotherapy).

The radiation methods used to treat Colin and other children with localized brain tumors are relatively new and offer new hope to families. Dr. DeWire reminded us that, only 10 years ago, a child like Colin would have been sent home to die. Under three, whole-head radiation is devastating, and I am thankful that we never faced that decision. Even so, it feels dangerous to get too comfortable with the idea of shooting photons into that fuzzy little head.

Timing is Everything

The cure for Colin’s cancer is defined as surgery followed by radiation, so there is no alternative option for him. We are grateful that we have these technologies available, yet also aware of how serious this really is. Just weeks before Colin starts his radiation treatments, The New York Times ran a series on the dangers of radiation, in particular the type of radiation used in his case, intensity modulated radiation therapy (IMRT).

• “Radiation Offers New Cures, Ways to Harm” — The New York Times, January 23, 2010
• “As Technology Surges, Radiation Safeguards Lag” — The New York Times, January 26, 2010

Obviously, we have a great deal of faith in St. Jude as an institution to take care of the children and institute fastidious safety protocols that exceed what is required by regulations. This kind of sobering information also makes us think about people who are facing similar decisions but without the safety net of a similar institution.

How can one as a parent or individual feel confidence in the treating institution? How much more overwhelming is the process when one is battling with insurance and questions of payment or coverage? I could easily see how these concerns could overshadow due diligence that the current system has placed on the shoulders of the patient.

A New New Normal

On a less philosophical note, it was just great to have everybody in one place. Aidan was beyond affectionate with his brother upon his return, curious about the new scars, and obviously happy to see his brother in good condition. Colin’s health has worn on Aidan’s psyche, and it is a tremendous boost to him to see Colin happy, healthy, and little changed from his pre-op condition.

Furthermore, we are able to tell Aidan that Colin is not scheduled to return to the hospital to stay overnight. This was a great relief to Aidan, though his anxieties have not rendered him phobic of the hospital.

Since his return, Aidan has been riding to school with our friends, the Simkins. While their son Brennan is in the hospital, their other sons, Christopher and Nat, are attending Aidan’s school. This has eased the transition for the boys and made the prospect of going to school even more appealing for Aidan.

Furthermore, Aidan happily chirped about looking forward to going to the hospital to visit Brennan and returning to the juke box area on the second floor. I’m not sure if this is how things will pan out during Brennan’s tenure in the hospital, but it is nice to hear him speak of something he likes there.

We will soon be settling into our own new routine, especially as Colin gets radiation. He has relatively few medical appointments now and primarily gets rehab. Every day, his walking gets stronger. His right leg is better at supporting his body, and he more confidently brings the left forward.

Ironically, Colin has not yet had a physical therapy session, but we are able to build it into his daily activities by pushing his wheelchair down the hall to get him to walk the distance. Given how he is currently moving and his increasing endurance, I am hopeful that he will be on a walker soon.

Wherever You Go, There You Are

When I am stooped behind Colin, holding his hands like a human walker or holding him under the elbow or armpit when he has a treasured prize like a lollipop in his hand, I dare to allow myself to envision him walking on his own. This is not a good example of living in the moment and it is a kind of indulgence, but it is one that illuminates a guide light. I don’t mean a light at the end of the tunnel, which is a depressing analogy, but a reminder of the very thing that it is in the process of happening.

Colin is walking. For him, today is just today, and it he is not working toward something; he is doing. This is not substantively different from what will happen when he no longer needs assistance and when he can stand and play at the train table for hours on end.

I may see the difference between Colin relearning how to walk and the “end result” of that, but there isn’t a difference. He goes to the edge of his capabilities because that is where it is natural for him to go, and the fact that the edge moves and he gets more competent is not remarkable to him. It is just the place that he happens to be.

Adults find it difficult if not impossible to replicate such an in-the-moment perspective. At best, I have to allow the image of that freely ambulating version of Colin to interject itself into my understanding of him today. Maybe I can feel comfortable using his determination and present-mindedness when I know it is channeled through parental forward thinking.

As parents, there is much that we have to absorb on the part of our children that challenges our ability to stay in the moment. There are multitudinous medical and practical life decisions, for example. This is true for any family, not just one facing catastrophic illness.

We get to torment ourselves with deep thoughts about the implications, risks and benefits of radiation while Colin knows that he will fall asleep every day in a treatment room and wake up to enjoy the rest of his day and that we do this to make the boo-boo in his head better. This is all he knows and needs to know about radiation at this point.

The older children here are much more involved and aware of the treatment, but for the parents of young children, the thought is either to preserve their innocence or lament its loss, depending on one’s perspective. There is so much we don’t know about how this experience shapes them, but there are parts that are easy for them.

It is a treasure to watch these all the children at St. Jude play and enjoy life, and it is the reason we do this. I would like my son to be cured of cancer, but I can’t guarantee that. Given the opportunity, he assures me that he can have a good quality of life. Despite the clear successes here at St. Jude, this is the story that lurks under the improving survival statistics, giving children a good day today. Tomorrow cannot be locked up in a box and presented like a gilded trophy. It may seem like a grim reality, but it is the same reality that we all face and it is one that focuses on allowing joy to bloom rather than feeding suffering.