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

May 23, 2010

Survivor: Target House

There is no immunity challenge, and Jeff Probst doesn’t sit us around a campfire to discuss who is next to go, but living here is beginning to feel like a warped version of the Survivor reality show. So many families that were planning to leave after us are by now long gone.

The Simkins, who have been our tried and true “backup team” in Memphis should be headed out in a week or so, pending good results from their son Brennan’s last bone marrow aspirate (so far so good!). We are excited for their return to Savannah, but it underscores the extent to which Colin’s unpredictability has attenuated our stay in Memphis.

Don’t Ask

In fact, we have been here so long after our intended departure date that many people we run into assume that we have already returned for scans! For whatever reason, it makes it more exhausting to explain the list of reasons why we’re still here.

  1. Counts dropped unexpectedly from low-dose chemo
  2. Mystery ailment on the eve of departure No. 2
  3. Disastrously bad reaction to second low-dose chemo

Oh, yeah. That last one is new, but I’m not sure if it really counts because we hadn’t actually made arrangements for a flight that we had to rearrange. In fact, we are hoping for a flight on Tuesday which has not yet been confirmed and it’s a good thing we weren’t planning to leave over the weekend.

The previous mystery ailment (the positive trach cultures all turned out to be “normal flora” in the end, but I was strangely unfamiliar with the process of determining this) has been assumed by Infectious Disease to be viral. We discharged from the hospital with Colin still fatigued and pale, but feeling much better and anxious to get out of the hospital.

Revisiting Diarrhealand

We gave Colin the antibiotic Augmentin just in case there was a bacterial something that we were treating with insufficient courses of antibiotics previously. This was a fine idea but gave him low grade diarrhea that made me nervous about the upcoming chemo. The most common side effect of erlotinib (Tarceva) is diarrhea, and it can be dose limiting, meaning we would have to stop the chemo and restart with a lower dose.

The diarrhea wasn’t very bad but I was armed with loperamide (anti-diarrheal) just in case and only used it sparingly. We stopped the antibiotic before the chemo so we wouldn’t have a cross-over of symptoms, which was one of our concerns. The last thing we needed was to stop this chemotherapy because of side effects from something else entirely.

Our fervor for erlotinib is based on the fact that Colin’s tumor tests (variously) positive for the EGFR receptor that erlotinib targets. This is all very theoretical because the drug is commonly used in lung and pancreatic cancers and is now experimentally used for other diagnoses.

In mouse studies, erlotinib reacts well in the ependymoma mouse that they have here at St. Jude, with the caveat that they have a supratentorial (upper half of the brain) ependymoma mouse, and Colin’s disease is infratentorial (lower half). So, all very theoretical but tantalizing.

Month Two of Oral Chemo (The Easy Part)

The next Monday, we started the traditionally well tolerated erlotinib with more first-day oral chemo frustrations but finally under way. The team wanted us to stay in Memphis for at least a few days to make sure he did well, which I found very funny since this is the “easy” month, and most kids go home right after starting the first month, which is more likely to be problematic.

On day 3 of the 28-day course, Colin developed horrible diarrhea. Horrifying more than horrible. It wasn’t about volume but content, and though I have a picture of it on my phone, I will spare you the graphic. The bottom line, so to speak, is that he developed grade 4 (the worst!) diarrhea with blood that absolutely needed to stop. I will say it seemed short of a tropical hemorrhagic disease, but it was close enough for my taste.

The bizarre thing is that his bloodwork came out terrific, with hemoglobin higher than Monday and chemistries perfect. I opted to keep Colin at Target House and aggressively give him the anti-diarrheals and rehydrate. Ironically, it was the first night he was able to go without oxygen at home in weeks. The next day, when I tried feeding him a bit, he started vomiting, though the diarrhea did finally stop during the second day. However, getting the input-output equation right is tricky business.

Colin has survived largely unscathed, with no skin breakdown (yippee!) and no apparent other effects to his body. He has a bit of a rash on his face, which is typical for erlotinib and, with lung and pancreatic cancer, “it means it’s working.” Somehow, that sounds more like part of a Saturday Night Live sketch than science, but there you go.

We also realized that Colin was still taking omeprazole (prilosec), which changes the pH of the stomach and therefore reduces the bioavailability of the erlotinib by about half. The dose reduction strategy is impossible to apply in this situation, so we’re waiting from guidance from Dr. Gajjar, who is out of town.

This One is My Fault

To top things off, I accidentally pulled out Colin’s G-J tube. Colin exclaimed once when I put him to bed, then I saw the long slippery looking noodle of the jejeunal portion of the tube on the bed. The jejeunal section is marked in black, a thick line running nearly the distance of the tube that could easily be interpreted as dried blood or parasitic worm.

We haven’t been using the J port for a while but decided to use it to feed him while we were working out the diarrhea/vomiting issue. While we wanted to test his stomach’s ability to process food, this wasn’t really how we wanted to do it.

However, I got a new G-tube in (by now, I’m a pro and it took less than five minutes) and he has tolerated 100% of feeds through his stomach through the night. This is tremendously good news and means that we (so far) aren’t forced to stay here longer just to get a new G-J tube placed.

Upon further scrutiny of the G-J tube itself, I discovered that the inflatable balloon that holds it in place inside Colin’s stomach was holding only 2 mL of water, instead of 5 mL. We are not supposed to check this tube because of the risk of dislodgement, so I had no idea what had happened, though it’s not entirely surprising.

The underinflation of the balloon means that it took relatively little pressure for the tube to come out and somewhat ameliorates my sense of guilt, but this didn’t have to happen at this moment. Of course, better to happen at home where I have ready access to a replacement G-tube.

When’s the Next Flight?

We’re really ready to leave in every sense (least of all packing, but the odds and ends can be swept up quickly). Colin and I have been living out of half-packed bags and boxes for almost a month now. On the home front, Dad has gotten Aidan back into the swing of normal life and has been furiously cleaning and organizing in preparation for our return. Early on, we had some anxiety about getting that accomplished in time; as it turns out, he has been able to hit every nook and cranny.

Colin misses his dad and brother, and we keep taunting him with the unfulfilled promise of returning home. That said, each delay has been necessary more than precautionary. I feel like it’s easier for me to tolerate the unexpected than Colin since I am more cognizant of the reasons for it.

Many families develop anxiety about going home and leaving the safe womb of St. Jude, but we are trying to pull ourselves out of the birth canal. This weekend, we rented a car and tasted a bit of freedom, Colin and me tooling about (a trip back to the hospital to fetch a lost dog [stuffed animal], and shopping at Kroger) in a little bright red Kia Soul.

The wheelchair barely fits in the “trunk” space in the back fully folded, but it’s good enough for us. Memphis looked different to me, more interesting and quirky than I usually see it. Perhaps the idea of not feeling trapped in the stretch between Target House and St. Jude has something to do with it.

The poverty and deprivation along Poplar Ave. is sobering and difficult to bear as the sole variation from St. Jude properties. The hospital shuttle takes families to the closest Kroger grocery store, which locals call the “crack Kroger.” Colin often points desperately inside when we stop there to or from the hospital, but I would shop there with him in tow only as a last resort.

Colin’s Make-A-Wish Trip

With our little rental, we were able to go to a Kroger further down the street, far from a luxe shop but better equipped and with a more middle class clientele. I had been nervous about taking Colin grocery shopping, given his strained relationship with food, but it was better than a trip to Disneyworld for him. He eagerly surveyed the hot food area, the cheeses, produce, baked goods, and so forth. He gesticulated with delight at the various foodstuff and chattered in a long stream of incomprehensible phrases.

We didn’t have much to buy but enjoyed the trip immensely. As we were strolling down the frozen food aisle, an older woman, petite and extremely cheerful, smiled and flirted with Colin. She was not only eager to engage him but reluctant to continue on her way, repeatedly wishing us a nice day.

A Strange Burden of Token Charity

She seemed to recognize that Colin was special in a St. Jude way and, like so many strangers, was searching for a way to express her well wishing besides a sympathetic/cheery/pitying smile. The message was loud and clear, but I was equally at a loss to respond satisfactorily. Finally, she turned to go on her way but retrieved something from the floor.

“Oh, here is a nickel on the floor. Maybe he’d like it for his bank,” she offered, rubbing the nickel off with a tissue from her pocket. I accepted it without resistance and thanked her, explaining that Colin does have a change bank. I feel we have a certain obligation to accept charity graciously, even when unbidden, unhelpful or even a bit embarrassing, because people who offer it sometimes need that circle to be closed.

In this case, I nearly regretted it, since she immediately started fishing around in her pocket for spare change, handing over coin after coin. This exceeded my charitable receiving limits, and I implored her to stop, but she was telling me how much he would enjoy the sound of the change dropping into his bank. In fact, he has a limited capacity R2D2 bank from McDonald’s that only accepts pennies and dimes.

Now, I’m committed to maintaining a bona fide change bank for Colin and won’t let those coins intermingle with my own supply. It is not so much that they are tainted or that I don’t want to spend the money, but there is a burden of the spirit of intent that comes along with charity. This is negligible in relation to a stray nickle retrieved from the floor but grows quickly when an elderly woman who may be living on a restricted income makes an unbidden donation to Colin’s cause.

Visit the Memphis Zoo/Sauna

On Saturday morning, our friend Tanya came over and we took a morning trip to the zoo, with the goal being to avoid both the crowds and the heat. At 9:30, it was already hot and muggy, and the parking lot was far from empty. However, we enjoyed a leisurely visit, starting with a jaunt into the nocturnal animal exhibit, which we have never seen, even though it is near the entrance. Colin was especially taken by a very playful armadillo that kept running in circles. The next most popular animal was a zookeeper cleaning one of the cages.

We followed this up with a ride on the zoo tram, first stop: polar bears. The polar bears are Colin’s favorite exhibit, hands down. They didn’t swim toward the glass window on the side of the building, as they often do, pushing off the glass with their big, black paws. However, we did get a good view of both of them and pushed on to see some very noisy primates that we have never seen before.

The meerkats and tigers are Colin’s favorite part of the big cat exhibit, with the perky meerkats possibly edging out the sleepy tigers. The tiger exhibit is beautiful, set in artificial Sumatran ruins, but the animals rarely seem to play with the aluminum kegs and other amusements in their enclosure.

After a visit to the playground, which Colin was paradoxically enthusiastic but not energetic about, we took him for a ride on the train that runs around the petting zoo (another first), followed by a few rides. His favorite was a boat ride, where he chose to sit behind a pair of girls rather than captain his own vessel.

After a number of visits to the zoo, I was surprised and pleased that we could find so many new things to do. Colin liked the train ride so well that we had to do it twice in a row. In the heat, Tanya and I were happy to sit and enjoy the ride, two rotations around the petting zoo where we tried to point out the little black piglets, each time in vain.

Home on the Range

Colin missed out on a family baseball outing back home. It would have been a great reunion on Friday night, especially as Colin loves baseball and had fun even a year ago at a minor league game at the same stadium. As we look forward to a return to normalcy, it is difficult to be busy with “separate but equal” family outings.

Our return is imminent, and we have to remind ourselves that our delays have been circumstantial, not fundamental. By this, I mean that the game of  Survivor at Target House is a much different one. People stay here because they are still alive, but also because they are still in treatment.

This can be a double-edged sword, a fact that we knew but were painfully reminded of recently. Most of the families whom we have outlived here at Target House have reached the end of treatment and returned home (or, in the case of Colin’s protocol, continued on to proton therapy in Florida).

Going Home (Not Colin)

However, we just learned that one of our friends who just received a bone marrow transplant has turned the wrong corner in his treatment course. Although the transplant had seemed to be taking hold unusually quickly and Aaron left the transplant unit ahead of schedule, the leukemia has returned with a vengeance.

I stopped by his apartment to borrow some aluminum foil (how mundane is that?), I found his mother packing up their things. She gave me this devastating news and, especially as I had the analogy of Survivor on my mind, became acutely aware of the razor’s edge that this particular version has. She is unsure even whether Aaron will be able to return home because his condition has progressed so quickly. The doctors are giving him the chemotherapy that had helped prepare him for transplant as a measure to extend his life, but the family now has to make arrangements back home for his funeral and burial.

Aaron is sensitive and observant, a young man who has always been well aware of his situation and has met it head-on. My last significant interaction with him was prior to his transplant, when we ran into each other by the therapy dogs (Tuesday mornings, and one of Colin’s favorite activities!) after his pre-transplant jaunt home.

He was very pensive not because of his own situation but because a good friend of his had died in a freak accident (crushed by stacked lumber) right before he was supposed to spend the day with her. At the time, I was impressed that a young man was able and willing to articulate his feelings and sadness. I gave him a big hug and fear that may be my last opportunity but am glad for it.

The other sentiment that struck me is that, in this environment, we’re used to children dying of cancer, yet it seems so unfair and wrong that they die of other things. That said, it is hard for me now to feel that it is anything but unfair and wrong that Aaron, who has such a strong heart and mind and is fully supported by a loving family, should fail in his quest.

Families come here for a chance, not certainty. If this weren’t the case, there wouldn’t be follow-up scans. However, when the situation changes swiftly, it is shocking nonetheless. Whether we need another reminder of human mortality and how quickly the black cloak can descend, it finds us.

Uncertainty is Reality

There is a point in curative treatment like Colin’s protocol where patients who have made it through the gauntlet return home to live in the uncertainty between scans. One little boy we have known throughout our stay is back now for a month instead of a week-long treatment once a month. He has been ready to return home when his cancer (medulloblastoma) returned, and he started on a new treatment plan that eventually transitioned into a maintenance phase.

Last week, his mother told me, they discovered that he recurred and now is here for a prolonged stay to start a new treatment. A week ago, she was a mess, she told me, but now she is okay because they have a plan. Again, the strange game of Survivor brings a former player back onto the scene, a bittersweet reunion that at least carries the hope of treatment.

Despite Colin’s propensity for attracting strange side effects, his trajectory during treatment has remained upward. Even ill today, he looks infinitely better than he did when we arrived. Better still, we go home (whenever that is) with the possibility that Colin has been cured and that ependymoma will never rear its head again.

As always, we have to live with Schrodinger’s cat, the uneasy duality that both cure and fatal recurrance are simultaneously true. I remind myself that this is no less true of all of us, yet it is a fact that the chances that Colin will not live through kindergarten are much higher than they are for the typical almost-three-year-old.

Going Home (Colin)

Perhaps our time here has also been a good opportunity to recognize what a wonderful gift we had in the Target House and living with our entire family intact. Although we can function separately, this time feels like limbo, a period of waiting to be reunited, rather than our normal existence either at St. Jude or at home.

In short, it is time to go.

5 Comments »

  1. Oh, Tamiko, miss you guys so much and are so frustrated on your behalf. We will be driving to NYC on June 5-6, and are anxiously hopeful that we can all meet up at that time. If not, of course, sometime later in June. Big kisses to everyone.
    Karen and Mateo

    Comment by kgraubar@nd.edu — May 23, 2010 @ 1:53 pm

  2. My prayers continue. Best wishes for a good trip home SOON.

    Comment by joan — May 23, 2010 @ 5:27 pm

  3. I am so glad you were able to get Colin out & about (as well as yourself!) We all miss you both so much. Thank you for such an uplifting post. I can’t get the scene of Colin in the supermarket out of my mind! xoxoxo

    Comment by kirstie8 — May 23, 2010 @ 8:03 pm

  4. Hope you all get home soon. The way things have been going for you we may run into you again! We return June 9-11 for Maisie’s MRI!!! I will continue to keep you all in my prayers!

    Comment by MaisiesMom — May 23, 2010 @ 11:30 pm

  5. I finally solved a little computer problem and can now access ‘Mom’. It is dizzying catching up with your posts! I am glad the most recent one has the wonderful acount of your trip to the zoo. ( Has Colin seen “Meerkat Manor”? )

    I think about/pray for you all the time. Colin is amazing, and so are you, Ian and Aidan. I look forward to the post that tells us about your first day home.

    Love to all of you, Diana

    Comment by dinetzer — May 24, 2010 @ 10:05 am

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