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

December 15, 2009

Last Stop, Pukesville!

The chemo train is taking Colin on a trip to Pukesville. Next station, Emesis Valley. Making local stops at East Heavetown and Upper Hurlbury! Discounted fare available with Zofran, Benadryl, Ativan and Reglan.

Cisplatin is the usual suspect with severe nausea and vomiting, and we have been bracing ourselves for this since the end of the last cycle. The good news is that Colin spent three nights out of the hospital before he started the cisplatin, a first in his adventures here.

Before, the methotrexate has taken a long time to leave his body and he has not been given the green light to be discharged before starting on Day 8’s push of vincristine and six-hour infusion of cisplatin. The Day 9 cyclophosphamide usually coincides with the beginning of the problems and some misery for Colin, whom we keep as medicated as possible.

Thus, it was especially nice for him to get out of the hospital and enjoy some freedom before launching into the tough part of chemo. Because he had been feeling pretty good, he was not delighted to come upstairs to get admitted for chemo. However, he adapted quickly and soon came to give us all heartburn over his new level of activity.

Before, we put Colin in a regular bed with side rails. The fancier bed sore reducing beds have gaps, so we were relieved to be back in a familiar spot with an older model that doesn’t have that amenity and instead has a long rail along the sides.

Even so, he quickly scooted around the bed, got himself tangled in I.V. and feed tubing like a dog on a leash winding himself around a tree. Then he ootched over to the edge of the bed, swung his legs over the side, dangling them and happily grabbing the rail.

All I could think of was what would happen if he decided to go off the end of the bed, which didn’t have much of a barrier. Cheryl, one of the NCAs, got the image stuck in her head of him slipping down in the gap and getting his head (and trach!) caught in the rail. Soon enough, Colin was back in a crib. Fortunately, he likes it, but I noticed that his feet reach the end of the crib when he slides down and he often sticks his feet through the sides, so one has to be careful about lowering the side bar.

Given the dramatic change in his condition and activity level, Colin attracts a lot of attention here. Many of the nurses who have taken care of him in the past stop by to see him and his antics and, even when wiped out by chemo, he is much more active than he had been when we arrived.

Thursday was Colin’s Day 8, and his last chemo for the week was on Day 9. For the early part of Sunday, he was playful and sitting up, but started fading and slept much of the afternoon. When he woke up, he looked good but went through a similar cycle.

There has been, to no surprise, much talk of discharging him on Monday. On Saturday night, he looked pretty terrible, partly because he needed hemoglobin. In the morning, he got a blood transfusion because his hemoglobin was 7.3 (below the requisite 8.0), but his ANC was very high at 6,600 (neutropenia is marked at 500). It’s expected to drop around a week to 10 days out from chemo, but my (perhaps strange) thinking is that the sooner the better so he can pop back up. Monday morning’s ANC was 5,500, but his platelets have started to drop and I expect he’ll need a transfusion of those on Tuesday.

 Overall, Colin’s condition is so much better with each successive cycle that it’s difficult to guess whether he will do better or whether the cumulative effects of the medication will take him down. Right now, he has been handling it okay and we’ve been able to keep him sleeping much more than vomiting, but it took about five days for the cisplatin to flatten him last cycle.

Electrolytes still present an issue and he received boluses of both potassium and magnesium to try to get him to normal levels that we can hopefully maintain through IV fluids.

There is little doubt that Colin will be fine by Christmas, recovered from neutropenia and feeling less puny. He has so far missed most Santa-related opportunities, including a visit here at the hospital on Saturday morning. The AutoZone Santa visited Target House on Sunday and, in absentia, gave him an early present of a nice Matchbox race car.

Aidan reluctantly participated in the Santa visitations, serving if nothing else as Colin’s proxy. Our enthusiasm for the season is ramped up because of Colin’s illness. At the same time, the jig is up with Aidan, who confronted me a few weeks ago and said, “Tell me the truth, is Santa real?”

It Must Be Santa Clause

He had noted the similarity in Santa’s handwriting to mine and questioned the feasibility of the fat man landing on burning embers, much less the physical impossibility of flying reindeer. “If Santa were real, he would have to use a plane and then drive to the houses,” Aidan deduced.

Aidan has been fascinated with Santa, and his favorite song on the St. Jude juke box is It Must Be Santa Claus, a horrific recitation of Clausey characteristics sung by Raffi. I have heard it a million times and Aidan purposely tortures me with it when we are in the second floor lobby. He has selected the song so many times that it edged out one of the Cars Movie songs as the number one track for quite some time, but it has since been supplanted by the marginally less ghastly Veggietales theme song.

I explained that there is no Santa who goes around and delivers presents but that the spirit of Santa is very real and much more important. Our biggest challenge has been managing his skepticism around other children. To this end, we have told him that it is not fair for him to spoil the secret for other children who still believe, though it is possible that, until we made this explicit, he was the child in class sowing skepticism among the other tots.

To be honest, the Santa revelation was a tremendous relief to me not because I have tired of the exercise (it was never something I embraced with particular zeal, being an early Santa-disbeliever myself, yet we partook for the sake of form if nothing else) but because it caused him considerable distress. Last year, Aidan was distraught by the idea that one of his classmates believed Aidan had made a joke at expense, hurting his feelings. At the time, Aidan opined that the resulting offense was the reason that Santa failed to comply precisely with the famous wish list.

The coincidence of Aidan’s newly confirmed information about Jolly St. Nick and the profusion of Santa-populated events has generated a curious variety of responses from Aidan.

The Carousel of Hope (pre-revelatory): “That’s not really Santa. His beard is real, but the clothes aren’t right.” Ironically, this was the best Clause imposter I’ve ever seen in person. His clothes were Rockwellian rather than simple red-and-white.

Aidan finally meets the Big Guy

Aidan, it's okay. They do a background check before they hire these guys.

The Jingle Bell Ball (post-revelatory): Aidan was not particularly interested in hanging out with Santa or snapping pix, though it was a good opportunity for charming family photos and holiday shots of the boys together. I told the Santa that Aidan knew the deal, and he summoned Aidan over. “You don’t believe in Santa! Well, children who don’t believe in Santa only get socks and underwear.”

“I love socks and underwear!”

“But not socks and underwear you like. The kind you don’t like.”

Aidan was nonplussed. Later, he told me that it’s not important what kind of socks and underwear you have but that you have something to wear at all. I have to admit a certain delight in learning how impervious my child is to the manipulations of a mall (or similar) Santa.

AutoZone Christmas Party at Target House: Aidan refused to get his picture taken with Santa and only stood in line for presents at our urging so he could get a car for Colin. When Santa tried to give him a candy cane, he petulantly told him, “I don’ t like candy canes, and my brother can’t eat.”

Santa told him to take the candy canes and give them to Colin when he’s able to eat again. This was not so glorious a moment for us, and I have thus far explained Aidan’s bad behavior (he was extremely impatient while waiting and was not very polite about telling the young woman with the camera on the tripod that he didn’t want paparazzi) by general fatigue, hunger, and a possible incipient illness.

Aidan’s most charming adaptation to his understanding of Santa is that he believes in Santa but knows he’s not real. As far as I can crack his five-year-old code, he means that he likes the idea of Santa, so he is choosing to embrace the Santa-ness of Santa despite cold hard facts.

Omnivore-Vegetarian-Omnivore

This is not so dissimilar from his argument today about vegetarianism. He told me that I should stop eating fish because the fish don’t like getting caught. Eating chicken was okay, a statement mysteriously tied to his observation that they don’t fly (because are not depicted as birds that fly, to him they are flightless).

Soon, he realized that, if we do care about the feelings of things that we are eating, I should not eat anything alive (oddly, Aidan’s nascent vegetarianism was focused solely on me), except it’s okay to eat turkey at Thanksgiving, an exception later amended to include holidays generally. I asked him what I would eat for dinner given these restrictions and he had a hard time answering that.

I asked about hot dogs. Sure, those are fine to eat. But what are they made of, Aidan? Oh, anything made of meat I don’t care about. For some reason, Aidan seems to have an innate insensitivity toward cows and pigs. But when I questioned his prejudice, he suddenly reversed his proclamation and said that I should eat everything.

The logic of the five-year-old can somehow be simultaneously irrational and perfect, and it is no small joy to watch him work out these ideas. As much as bringing Aidan to Memphis has been a convenience to us and an effort to keep the family unit intact, we get a lot out of having Aidan here.

Aidan is a potent reminder of normal childhood and a good counterbalance to the medically acute situation within which we manage and think about Colin. It feels awkward to me when I hold my lips close to his right ear and talk to him, since I have now conditioned myself to incline to Colin’s good left ear. At the same time, I enjoy how strange it feels and how good it is to fight that conditioning.

Dr. DeWire visited with friends over the weekend, and she reported back that it was good to spend time with children who are healthy. As those genuine and true words spilled out of her mouth, I sensed that she suddenly wished she could retract them, feeling guilty for somehow disparaging Colin for his illness.

However, I couldn’t agree with her more. Most children don’t have life-threatening illnesses, a fact that it is easy to forget while immersed in this environment. As much as I appreciate my newfound familiarity with the world of pediatric cancer, I also need to be pushed back into genpop, and Aidan is the right man for the job.

4 Comments »

  1. Thank you, Aiden, for transporting this old man back through time, when at age five, I discovered my Uncle Marshall, dressed in a red and white suit and large blobs of cotton balls glued to his chin; kissing my Aunt Olive – behind a large white sheet stretched across my Uncle George’s living room – over-which we “fished” (with a bamboo pole)for gifts – some of them toy cars and tractors, with an occasional steam shovel lurching down over our little heads. The mysteries of Christmas were heightened in the dim light as we were privliged to pluck burning raisins out of a bowl full of harmlessly flaming Congac. Our lives seem to be reflected in mysteries – within mysteries; as if we were to peel them, in layers from our thoughts. I have always felt comfort in a willingness to notice that some mysteries are good for people and some are not so good for them. However we always seem to be confronted by newer mysteries, each unfolding before our eyes and causing us to wonder: is this a good mystery or is it one that might not be so good? If we were puppies or kittens, we would probably be unconcerned – but as we are human – we sense a need to understand deeper meanings of our dazzled experience. Our mysteries, like our dreams, are a wonderful part of the mysteries of life, layer upon layer – some of them may be good for us and some not so good. We are free to wonder. Perhaps this is why puppies wish to play with us.

    Perhaps you might even be wondering why your little brother, and all of us, are being called, by our nature, to endure discomfort – the best we can do is provide each other with the best of all comfort, in loving, which our natures will bring, as gifts of Christmas, into our lives for each other. Colin is a great gift to you and each of us, for which, this Christmas above all, we rejoice. I’ll bet Colin will be an expert of mysteries.

    Grandpa

    You have become a precious gift to me….thank you Uncle Marshall!

    Comment by Dick Hayward — December 15, 2009 @ 5:00 am

  2. Funny, Mateo still believes in Santa (he made me go to the mall on Saturday to give Santa the list) although is deeply skeptical about the flying reindeers and time travel thing. And even though I’ve tried to get him to become a moral vegetarian (if only to allow me to eat less meat!) he has no qualms about eating living things. Aidan would be a good influence!

    Love to all, happy holidays — sad that we won’t get to see you when we travel to NY this time, but hopefully soon.
    Love, from Karen and Mateo.

    Comment by kgraubar@nd.edu — December 15, 2009 @ 6:06 am

  3. I’m sure Aidan’s story brings us all back to the year we discovered the truth about S.C. I remember not wanting to hurt Daddy’s feelings. He would wait until we were in bed and then go up to the attic ( with bells ) and try to sound like S.C. on the roof. It was an obvious sham (you know Daddy) but I went along with it so he wouldn’t feel bad.

    And then there was the year our class went to the turkey farm and met “Tom”. I didn’t eat meat for quite a while. I still prefer no meat.

    I’m glad to see Aidan’s a thinker. I’m also happy to read that Colin is getting more active. It might be harder as he tangles up in his tubes, but what a good sign!

    Love to all, Diana

    Comment by dinetzer — December 15, 2009 @ 1:22 pm

  4. Diana, you know that Daddy was up to the same old tricks when I was little. He did the same bell-and-stomping routine but tried to augment it with Arthur Shilstone coming over, ho-ho-hoing loudly and fawning over cookies in the living room while my mom kept me in the stairs to listen to Ole St. Nick.

    I told my mother, “That’s not Santa. That’s Uncle Arthur!” It was completely spontaneous and I didn’t have the wit or heart to keep it to myself.

    I wonder if it was the same set of bells. 🙂

    Hugs and kisses to our Colorado contingent!
    Tamiko

    Comment by Mom — December 15, 2009 @ 1:38 pm

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