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

April 12, 2010

Operation Radiation

Colin’s final radiation treatments found us at Methodist Central, an adult hospital not far from St. Jude in midtown Memphis. The final dose of radiation was delivered on Saturday morning, when a normal child of his age is watching cartoons. We are in the home stretch of our time here in Memphis and the more involved phase of treatment, with our focus shifting to the reality of caring for our (now much less) complicated boy at home.

The impending logistical challenge of returning home was overshadowed by an unexpected turn in Colin’s radiation treatment. On Tuesday morning, Colin and another little boy with ependymoma (he is under three but had a gross total resection, so he is not being treated under the same protocol) were playing separately in the play room, happily enduring a delay, when one of the radiation therapists came in and asked if we could wait an additional hour because they were diagnosing equipment problems.

Not long after, I went to the front desk for a status check, at which point I noticed two of the anesthesia nurses leaving the department and heading for the elevators. Seeing this, it was pretty clear that radiation was not happening on that day, and within a few minutes, Dr. Kun, another senior radiation oncologist, came out to explain that the wave guide, which constitutes the central pathway for the radiation (Dr. Merchant later described it as the “aorta” of the machine) had failed unexpectedly. The unit had been upgraded less than four months ago and this part typically does not go bad for many years (seven to ten).

 Change of Plans

Normally, this malfunction takes a week to fix, and normally this wouldn’t be catastrophically bad, but there is no backup machine at St. Jude right now due to a similar upgrade to the second machine. Initially, they had estimated that the repair could be accelerated and completed by Friday, but soon it became clear that this wasn’t a practicable solution. Instead, the hospital had arranged to send the St. Jude patients to a nearby adult hospital for treatment.

This new plan was alarming and disorienting, especially after months within the cocoon of St. Jude. The prospect of radiation is alarming enough, but it seemed unthinkable to change course so abruptly, especially with only four treatments to go. However, Dr. Merchant explained that the anticipated gap of a full week would render any subsequent treatments irrelevant; thus, Colin would not even have received the 30 treatments necessary to bring him to the minimum dosage (54 Grays). The only good option for Colin was to continue under the new plan with every assurance that they were reproducing the St. Jude services as well as possible.

Treatment resumed on Wednesday with only a one-day gap, groups of patients getting shuttled to from St. Jude to Methodist. The waiting room, decorated and designed for adults, was converted into an impromptu play area, with blankets on the carpeted floor and a big crate of toys brought over from St. Jude. The children, as always, played in the new environment fairly oblivious to the change, but the parents looked bewildered and a little stunned.

Dad called it a radiation field trip, but that first night, the waiting room felt more like a refugee camp. Despite the haste of the change in plans, we were comfortable with it, having had a long conversation with an inordinately patient Dr. Merchant about both the necessity of continuing treatment pronto and the difference in equipment at Methodist (surprisingly little; they use the exact same machine that St. Jude just upgraded from).

Radiation Refugee Camp

To say that shifting the entire operation to another hospital was a major effort is a vast understatement. All of the medical staff had to have privileges at Methodist, though some already did. The younger children require sedation, so there were two anesthesiologists (physicians) each night, as well as three nurses qualified to administer sedation. We had a full complement of nursing staff for induction, recovery, and managing the flow of patients. The St. Jude radiation technologists operated the equipment themselves, and the physicists who program the plans were on hand as well as a radiation oncologist.

It was like the radiation oncology staff, which is normally spread out across the entire floor (and more) back at St. Jude, got turned inside-out and we could only now really see the vast number of people it takes to plan, administer, and monitor treatments that themselves take only a few minutes.

They had to bring over their own supply carts, and the anesthesia carts traveled back and forth every day to refill medications. Bear in mind that there is no “back-up” of supplies at Methodist because adults do not get sedated for radiation. All of this had to be planned and arranged in less than 24 hours simultaneous with the efforts to get the Linac up and running again (the last I heard, this was the case, and a friend of ours down the hall will be getting radiation to prepare for his bone marrow transplant during the week).

The first night, they treated 17 patients and worked until 2 a.m., in part because of a 45-minute delay at one point during treatment. The second night, the operation was much smoother, and we arrived as they were wheeling out the last adult patient. It was jarring to see a large and, more importantly (some pediatric patients are adult sized), old person receiving medical care. We have grown accustomed to the idea that only kids seem to get sick and that small children rarely have a full complement of hair.

Not in Kansas

The sense of disorientation applied equally to the staff, who are used to brightly colored and decorated halls adorned with happy artwork and pictures of smiling patients. There are ample supplies of toys, and the induction rooms are equipped with TVs and DVD players. The induction rooms are cramped and awkward, congested with big person exam chairs – and in one case, designed for really big people, extra wide and sturdy.

The hand sanitizer mounted on the wall is different, a thick and soft foam that, if overapplied, takes forever to evaporate. Everybody who is unaccustomed to it makes similar movements with their hands trying to figure out if their now-tacky hands are actually cleaner than they were before. These are the kind of minutae that serve as a constant reminder that you are in foreign territory.

However, the most remarkable part of the whole experience was the response and attitude of the staff, who were eager to help the patients and be part of this historic operation. I found out from the nurses that there was some competition for slots, and I heard from more than one, “I only get to work one night.”

Everybody was on extra high alert, attentive to details and the difficulty of conducting their business without the normal procedures. This was particularly the case for the younger sedated children. Patients had to be induced right in the treatment room rather than being wheeled in, and there was no good recovery area. Sometimes, Colin would be recovering on a stretcher, and sometimes he would be bouncing on the knee of a nurse in a consulting room.

On Saturday morning, I arrived with Colin at the same time as Dr. Kun, arriving at the hospital armed with a big bag of bagels, and who offered to supply me with coffee when I explained that I was headed back to the car to retrieve my forgotten mug. Soon enough, he was serving me coffee and a bagel, thoughtful enough about Colin’s NPO status to keep it out of his sight. Both he and Dr. Merchant, who wield very harsh medicine, are the gentlest of physicians.

By that fourth day of treatment, I think the novelty had worn off for everyone and it was time to go back to St. Jude. Before Colin had woken up, the therapists were carrying out the equipment that they had brought with them. Feeling a little lonely in the waiting room, I wandered into the back to fetch him even though he was sleepy and grouchy.

I was rewarded with the white plastic mask used to place his head during treatment and a pair of balloons tied with curling ribbon around a gray t-shirt emblazoned, “Operation Radiation: Mission Accomplished.”

The end of chemotherapy comes with much more fanfare; lots of people sign the shirt and there is actually an end of therapy song. No such luck with radiation, which in Colin’s case in particular was more like hanging around after a wedding while the catering crew is striking its equipment.

Around here, all milestones are met (by families) with some suspicion until actually achieved, as we have learned from experience. Maybe we would have felt differently if we were really at the end of therapy, but with six months of oral chemo ahead, it feels more like we are passing into yet another stage.

Preparing the Caravan

That said, the completion of radiation takes us one step closer to home and return to a more normal existence. The realities of this have been dawning on us over the past weeks and come into sharper focus as the time draws nigh. Among other things, we must prepare our home for handicapped access, since there is no way to get into the house without dealing with many stairs (if anybody has any tips or experience on this front, please let us know, since Dad is heading up this project over the next few days).

Like many families here, we have become accustomed to this life that is immersed in cancer care. Leaving St. Jude means that we will also leave that cocoon of support and acceptance from other families, not to mention the assurance of being so close to our medical team.

Shifting to new doctors means adapting to another system and having to navigate communications with different people, especially if there is a problem. Here, we have the immediate back-up of a doctor on call at St. Jude at any hour, and at this point there is nobody on call who doesn’t already know Colin and us.

The calls may be relatively minor, such as one last week after Colin had two surprise bouts of vomiting in a single day. It was nothing serious and certainly not worth bringing him in for a look-see, yet we were able to come up with a suitable plan and felt more comfortable as a result. Back home, we lose this medical intimacy and the immediate access to services should the need arise.

In the absence of the chemo, the concerns would be less rational, but we are a bit apprehensive about the effects of the oral drugs. These questions will be answered before we return home, yet they add a constant air of uncertainty. We plan on leaving after we feel we have a good handle on how well Colin is tolerating the chemo, yet our plans may change if something odd happens, as it did in that second week of radiation.

Older children who can articulate it talk about feeling weird about how people will react to their bald heads. It is easy to forget that Colin has a self-image, and he will also be self conscious about his appearance and his inability to do what he had once done. I think that he will miss being around other children who are going through similar experiences

What we and Colin’s St. Jude family applaud and praise will be met with curiosity and fear in the public arena. Colin’s halting steps, with me holding his hands for balance, are major news around these parts. Even more so is his indistinct throaty speech; even the most garbled word or a spontaneous “bye” are greeted with squeals of delight. At St. Jude, Colin and his dramatic improvements make people happy. However, in the real world, he is a bit of a freak, and even well meaning people are likely to react that way.

In the scheme of things, it is a small concern and something we will all get used to. Colin is resilient in so many ways. He is an irrepressible jokester, which can be simultaneously hilarious and frustrating when he is thwarting a necessary procedure or making a terrible mess. Lately, he has taken to blaming others for his bodily functions. This started when I asked him if he pooped and he pointed at Aidan. Just for fun, I ask, “Who farted?” and he invariably sports a big grin, pointing at somebody else (interestingly enough, he only lays blame on people he is comfortable with). If potty humor doesn’t disarm people, I don’t know what will.

7 Comments »

  1. Yay, was missing the updates. I take it that this means a return to CT soon? We are in the east til July 1, so I hope this means we can see you all really soon.
    Love,Karen and Mateo (who also wears out all the knees in his pants, regardless of quality)

    Comment by kgraubar@nd.edu — April 12, 2010 @ 5:57 am

  2. looking forward to your return – can’t wait to see Colin in action in person!!

    Comment by bjmeola@att.net — April 12, 2010 @ 8:38 am

  3. We are so very happy to hear the good news. We will be returning to Memphis in a few weeks and hope that we will catch you before you leave for home. It took me 8 long weeks before really feeling at ease at home and now it is almost time to return hopefully for only a short visit. Always remembering our family in our thoughts and prayers.

    Comment by melissa.hamm — April 12, 2010 @ 10:01 am

  4. What an adventure! We look forward to seeing you all again this week. As you know, potty humor is a standard part of the Band of Brothers repertoire — and usually involves Christopher! Can’t wait to see if Colin includes him in the joke of the day.

    XOXO & Press On!
    Tara

    Comment by tara — April 12, 2010 @ 10:32 am

  5. I believe all of us that have been following Colin’s progress will continue to cheer him on when he returns home. We, of course, look forward to seeing all of you. Please continue to keep us up-to-date on what you might need help with. I’m not so handy with engineering feats as architecture and building are not my forte, but there are probably other things I can assist with. I can’t speak for the whole community, but I suspect there are many others here who would like to help too.

    Comment by pfrost — April 12, 2010 @ 4:42 pm

  6. I hope I him and you all soon and that things can be as normal as possible for him and everybody. Being bald is normal for me so Colin and I can “commiserate” (as if it will matter to us). I just know that him seeing me will give him a sense that having hair is an option, not a requirement.

    Please give the boys hugs from me. As you fly out, wave at me as you pass over, I’ll feel it!

    Comment by markhayward — April 12, 2010 @ 7:35 pm

  7. Thank you for the updates. I can’t wait to see you all back home in CT. It must be overwhelming, to say the least, to leave the support network of St. Jude’s. We will do our best to support you all here, but I am sure it will not be the same. Please remember that we don’t think that Colin is a freak and that we all just want to give him lots of hugs and kisses.

    Hugs, love, and prayers to you all.
    Riye

    Comment by riye_aoki — April 24, 2010 @ 2:55 am

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