Winding Down*

Our family’s time at St. Jude is drawing to a close. On Friday, April 16, Colin had his last MRI before he goes home. The suspected tumor, as we hoped/anticipated, remains stable, and the spinal scans are still clear. Furthermore, the blood clot has resolved significantly, with some pieces remaining and very good blood flow around it. The news on the tumor is always a relief, though not a surprise, but the near-resolution of the clot is another example of Colin’s very good bad luck.

Dr. Gajjar attended a session on coagulation at a recent conference with Colin in particular in mind. Evidently, Colin is in the gray area of treatment because of the known issue of Factor V (the roman numeral five, not the letter) Leiden polymorphism, which increases his native risk of clotting. In addition, other clotting factors in his blood are abnormally high, though for the moment this could be due to therapy. We will need to consult with an additional specialist at some point, and Dr. Gajjar mentioned a coagulation expert in Toronto that he knows. Apparently, they are few and far between; for the time being, Colin is stuck, well, getting stuck twice a day with Lovenox at least until his next scan in three months.

Colin started oral chemo on Monday the 19th, a frustrating and long day due to confusion from various sources. The details are too annoying to repeat, but were somewhat related to the fact that Colin had been off and apparently suffering from a minor (probably viral) infection. We were unclear as to whether he would get the go-ahead to start chemo because of this illness but did get the green light.

*Another Surprise from Colin

On Tuesday, it seemed like the funk was less funky and that Colin was on the mend from that. However, at around 6:30 am, he abruptly spiked a fever and we went in for blood cultures and so forth. Under the assumption that he had aspiration pneumonia, he got admitted to the hospital; his chest x-ray was clear, but signs could have been delayed, and we have a low threshold for treatment for respiratory problems.

Really, Colin could have gone home, but he was uncharacteristically tired and needed a ton of suctioning. By the late afternoon, we had another reason to be admitted, which was a blood infection (generically, they tend to call these line infections, though we’re fairly certain this did not originate in the line and they do not typically take a peripheral blood culture that would help isolate the source of infection). This makes infection number five, enterobacter, a gram-negative bacillus.

The operating theory is that this infection sprouted from native organisms in Colin that gained ground as his system exhausted itself fighting the virus, with the bacillus migrating into the bloodstream. Colin got broad and heavy antibiotic coverage until we got specific susceptibility information on this bug. Fortunately, he is able to avoid cefepime, which is a useful but troublesome drug that makes Colin vomit and makes his secretions (top to bottom) smell like an old fish store.

As we all know, Colin likes to surprise us, and this is yet another example. Despite our concerns about the possibility of problems with oral chemo, we did not anticipate returning to the hospital, much less an infection. The worst part of the infection is that it flattened Colin for a few days and kept him from therapies and some outings.  The only ongoing concern is that his history of fungal endocarditis means that there is still a “coral reef” of sorts on hit heart that other organisms could take up residence in, making us especially watchful for repeated positive cultures.

Before the infection struck, we were marveling at the fact that the last MRI was Colin’s last sedation here during our Memphis stay, and that he would no longer have to have his port accessed for any length of time (ha!). Well, that was theoretically nice to contemplate. We administered IV antibiotics at home to complete the course of meropenem, so there as more fretting over the dressing during his daily bath.

Miracle Baby

Our unexpected and presumably final return to the floor also gave us an opportunity to see many of the people who were part of Colin’s journey during his first months in Memphis. Colin’s very first nurse got to see him while he was feeling better, happily waving at the nurses, blowing kisses, and saying “bye.” Judy had tears in her eyes as she recalled his pitiful arrival here and got to see how far our boy has come.

Selfishly, I drink in the awe of the staff, also knowing that this is the stuff that they subsist on. Colin’s recovery sustains their faith and commitment in the work here, much as their reaction bolsters our confidence that we did the right thing to subject Colin to months of treatment in order to help him.

Retrospectively, Colin’s adventure seems impossible and insurmountable. However, having gone through it myself, I know that the small victories and minor details are everything. It is hard to stay focused on the long view when it is so very far away. Myopia is useful when it allows you to rejoice in small improvements. I recently discussed this very fact with the dad of a leukemia patient who recently went in for his bone marrow transplant. This process throws the family into limbo for weeks of unbearable uncertainty. In the absence of control or even good knowledge of the disposition of his son’s disease, he spends his energy encouraging his child to get up and walk or do other things that are important today.

Of course, this perspective can be dangerous if one loses sight of the larger goals and no longer has the capacity to discern what is truly attainable. I have seen times when the staff thinks that a particular family member is delusional about the patient’s prospect for recovery, and it is painful for me to consider that I may be counted among these.

Perhaps the poignance of Colin’s imminent happy return home is underscored by the fact that several patients who also had long inpatient stays but returned home have died within recent weeks. There are different flavors of “going home,” and we are lucky to be enjoying the good version of that.

**Yet Another Surprise from Colin

In the course of the long delay in writing this update, Colin had yet another complication that has pushed back our departure date. Dad and Aidan drove home on Friday, April 30, and Colin and I were to follow on May 4. However, his Monday morning labs showed that his hemoglobin had dropped and platelets had plummeted, presumably in response to the chemo. He also started projectile vomiting and just looked puny.

The oral chemo regimen has a fairly high threshold to change or stop therapy, and Colin is 3,000 platelets away from that limit. Presumably, he was sink below the required level, at which point we suspend chemo (there are only six days left) and juice him up with platelets and, possibly, blood. During I.V. chemo, he would drop an average of 1,000 platelets an hour; this is much less potent, yet in the course of 24 hours, I am guessing that he will not disappoint us.

My other lingering concern relates to the earlier blood infection. His current symptoms mirror his symptoms immediately prior to the last infection, minus the profuse secretions, which we assume were the result of the viral funk. We drew blood cultures in the morning, which was had intended to do anyway, and before we leave we’ll feel confident about those results.

The next time he takes the cyclophosphamide and topotecan, the dosage will be reduced by 25%; if he still has problems, the topotecan in the last cycle will go for only seven days instead of 10. The topotecan is one of two drugs (including erlotinib, aka Tarceva) in the maintenance phase that has proven activity in mouse ependymoma cells. Unfortunately, the mouse model is based on supratentorial (upper half of the brain) ependymoma, not infratentorial (lower half of the brain) ependymoma, since they were unable to find any common genetic markers related to the latter. Thus, I’m not sure exactly how applicable the mouse studies are to Colin’s case per se, but currently it’s the best we’ve got.

License to Mullet

I’m not sure if I should attribute my parting gift to the City of Memphis or the spirit of the South generally, and most people here think I’m being unfair about it entirely. However, I think I’ve been pretty good about the North-South thing and don’t really gloat about the fact that, you know, people in the North don’t really pay much attention to it at all and everybody who isn’t from down here gets called a Yankee, even when they’re from Nebraska.

The long and short of it, literally, is that I went to get a haircut and ended up with a mullet. To be fair, I wasn’t very specific about what I wanted; I requested “neatened up” and got something that the hairdresser, an older man who is also a former flight attendant, described conspiratorially as his Pat Benatar cut.

“It’s classic. It never goes out of style,” he told me proudly. Apparently, Pat Benatar doesn’t agree because she no longer sports it, but what’s the point in arguing with a man who clearly still resides in the 80s?

When I got my glasses back on and looked in the mirror, I tried not to look utterly shocked. I looked like a flight attendant of a certain age (I think there was some influence from his former profession), and let’s say that it wasn’t a particularly flattering style. He and his big watery eyes were so kind that I didn’t dare say anything about the cut like, could you take a bit off the bottom? I gave him a nice tip and skulked to the car desperately searching for a hat.

Back at the Jude (this is while Colin was still inpatient), everybody I saw was way too nice to admit that my hair was a disaster. My response to that is, does the phrase “cruel to be kind” mean anything? But there was no denying that I needed serious help once I got the whole mess wet and the effects of the blow-out (wow, it really did improve it!) were gone.

I wore one of Aidan’s hats to pick him up at school and dragged him to a hair salon, which he initially complained about but then enjoyed because he got to play with the Simkins and the salon has a bowl of Dum-Dum lollipops. The hairdresser had a new mission with a very low bar: do something better than a mullet.

My backup plan was to shave it all off and claim that I was doing it for cancer awareness or fundraising or something. Fortunately, I didn’t have to resort to that and managed to escape the entire incident without anybody taking a picture, which is a tremendous mercy, especially as we do know somebody who collects mullet photos and I refused to be collected. This is one of those situations where the internet is definitely not your friend, but I count this as a bullet well dodged.

I am now tempted to make up “No mullet” stickers for salon windows so people like me can feel safe setting foot through the door. Today, one of the nurses told me that it was unfair for me to blame my bad hair on the entire region and that I didn’t “get” a mullet. That’s right, I told her. It was inflicted upon me.

One might think, after going through the experience of my child getting treated for cancer, yada-yada, that my vanity would mean little. However, I was surprised to find that I had a new low to experience and more humility to discover. I have never been very fussity about my hair, probably to my own detriment in the personal appearance department – heck, I let my mother cut my hair throughout college.

Those pictures are bad enough, forget about the mullet. Just look for the girl with the bowling ball head. Not that I did much better on my own, as I used to put my hair in a pony tail and cut the end off, then lean over the garbage and, without the help of a mirror, shorten the bangs with one good snip.

Thus, my mortification at the mullet incident is surprising yet telling. I literally felt I could not go in public without a hat or was compelled to explain that this haircut did not express my actual (limited and quite retarded) fashion sense, which pretty much resulted in me mumbling a lot to everybody I encountered. Perhaps it is reassuring to be reminded that I still have many lessons to learn, though I’m thinking that the one that is most front-of-mind is that I can’t be so cavalier when asking a stranger to come at me with a pair of scissors.

Growing Up

The past eight months have been an opportunity for all of us to grow up, most notably Aidan and Colin. Aidan is no longer a cute little boy but is now a boy, still cute and sweet but also much more petulant and defiant. Colin grew out of toddlerhood into little boyhood, and his now-long legs fill out his wheelchair. Both boys have grown by inches and transitioned through the clothing sizes that we brought here.

Back home, Aidan evidently tried to wear a pair of pajamas he had squeezed into last year that, according to Dad, now fit him like capris. Similarly, Dr. DeWire, who often asks us what size he wears, is accusing us of putting him in highwaters. I tried arguing that I like the pants on the shorter side because I don’t want him tripping as he’s relearning how to walk, but she’s probably right.

When I look at Aidan and see how he’s changed, I feel that I’ve missed so much of this transition because I’ve been necessarily preoccupied with attendingto Colin’s healthcare. Of course, I have it lucky, and many of the moms here live without their other children for months at a time. There is a woman here from Samoa who has ten children but is here taking care of her one sick child. She hasn’t seen her other children for something like a year.

If you ever feel sorry for yourself, it is easy to turn around and hear another story that breaks your heart and wonder how people manage. As much as people are inclined to view a situation like a child getting cancer as an abject tragedy, it’s not the worst thing that can happen. Colin is alive and happy right now, and even continuing to grow (at least, until the radiation kicks in and possibly stunts his growth).

The best part of going home is allowing cancer to recede more into the background and normal life to take over. Aidan has been yearning to know when we can flick the switch and Colin is “cured.” However, I’m not sure this is a part of growing up that he is ready for, the patent uncertainty of life and the particular uncertainty that will hover inside, if not over, Colin’s head for the rest of his life.

Just like the Santa issue, I’m not prepared to lie to him and tell him that Colin is all better, yet I don’t want him to worry because that simply does no good. Although he’s not able to speak much, Colin lets us know that he’s still worried, too. He doesn’t mention it often, but the talk of going home has sparked more concern from him about whether his head is all fixed.

Maybe the hardest lesson to teach them will be the hardest one that I’m still trying hard to learn, which is really how to live life in the moment. It is something I have to discipline myself about and forgive myself when I fail. It is easy to submerge into fruitless thinking, but all that serves is to drag one into the future and away from what is on the table at this moment.

But maybe I’m wrong and I don’t have to teach the boys anything. If I keep learning my lesson right, with any luck, they will simply follow suit.