Today was Colin’s first day of chemo in week two of his four-week cycle. He slept through the first drug (vincristine), which is an injection, and has seemed to breeze through the second (cisplatin), although the side effects may not be immediate.
Cisplatin (and other chemo drugs) can burn the skin, so they have to be careful when handling the IV. There is a special blue pad used to absorb drips because of this. The nurses wear a sturdy blue gown when working with the chemo drugs (this isn’t to preserve sterility in one direction or the other but to protect the nurses). To add to the mystique, the cisplatin is light-sensitive, so it remains inside a dark brown plastic bag.
The methotrexate from last week has been affecting Colin’s skin, making it more sensitive to damage. The epidermis has been sloughing off, making it look like he is recovering from a full-body mild sun burn. Even today, he has continued to receive leucovorin because the methotrexate has not fully left his system.
Tomorrow, the cyclophosphamide (Cytoxan) goes in 24 hours after the vincristine injection through an IV drip that lasts for an hour. All of this is completely transparent to Colin, since the nurses only fuss with machines and the IV that is already connected to him through the mediport.
Since this is Colin’s first cycle of chemo, we are anticipating that his reactions may be much less serious than they will be in subsequent rounds, although the opposite can also be true.
We made sure to get Colin outside this morning; he took a stroll to the garden and visited several fish tanks inside. He will have a hard time understanding why he will be restricted from travel when his counts are low, yet he will also probably be weakened and not feeling particularly adventurous.
Today, Aidan and Mom ventured to the Mud Island River Park. Mud Island is also where his school is. From downtown Memphis, there is a monorail station that brings visitors to the park (one can also drive there, but the monorail is fun). This is an inverted monorail with a walking area above, so the view it provides is primarily downward.
The park has a museum, which we did not visit, and also a scale model of the Mississippi River with water running through it. This is fun to walk through though also uncomfortable because the elevations above and below water are represented in a hard composite material. The river bed is rarely flat enough that one can walk without stepping across two if not more levels.
Cities are constructed of metal and slate, with some major landmarks and streets/bridges labeled. Memphis is the most detailed of these, not surprisingly. The cities are fun to walk through although the slate becomes painfully hot and necessitates a dip back into the Mississippi if one is barefoot. The metal bridges are designed to be strong enough to walk on, which is a good thing because they are much too tempting for little feet. What child would not want to place a Brobdignagian foot on the bridge that crosses to Mud Island?
The model constitutes a fun geography and history lesson — way too much to digest in a single outing. The curves of the river, which is sometimes wide and flat and in other places gouged more deeply, are wonderful art independent of their symbolism.
New Orleans lets out onto a series of swampy waterways and a rank paddle boat arena. There is a pirate ship and the ubiquitous swans, but they all look strangely confined on this small spit of land straddled by the Mississippi River, where barges push impossibly long loads and other boats go about their business.
The barefoot foray down the mini-Mississippi was a suitable activity in the heat, which was not sweltering but disablingly humid, especially to Aidan. We returned to the hospital before Colin’s chemo started and in time for Dad and Aidan to go to a local minor league baseball game.
The stadium was clean and family friendly, as we have found to be the case generally with minor league baseball. They also served a delicacy called chicken on a stick, which includes chicken (naturally), pickles, and perhaps some other incongruous food item(s), all deep fried. It seems either very Southern or very Scottish (remember, the Scots innovated deep-fried Snickers bars) but is reportedly “delicious.”
The tendency toward fried food is frustrating to granola-eating Northerners subsisting primarily on hospital food. Although this is less true now, it has been the case for a number of months. Hospital food generally speaking is neither gourmet nor healthful.
Parents of seriously ill children tend to look malnourished, either under or overweight, and grossly unfit. There is a strong tendency toward smoking, even among some adult or adultish patients. Smoking is severely restricted, although very unfortunately the smoking shack is right along the one-mile walking/jogging path that circumnavigates the campus.
The food offerings at St. Jude are above average, although they are not consistent because the facility focuses on outpatient care rather than serving as a primarily inpatient provider. Therefore, the cafeteria is excellent at lunch; there is a very nice salad station where they mix up an interesting blend of ingredients.
Even compared with the same type of thing in New York, this stacks up favorably; although there are relatively few items, they are unusual and tasty. They offer small pickled cipollini onions, full-sized capers (not the berries), pickled artichoke halves, and other more standard fare.
There is also a hot bar that rotates every week. At the end of August, it offered Asian dishes and in the first week of September, Mexican. This provides some variety to the other stations (grill; Southern home cooking [this is certainly not what they call it but how it strikes us]; soup; regular salad bar; Italian [pasta and pizza]; sushi).
However, at dinnertime, these selections are significantly narrowed. The same is true, even more dramatically, over the weekend. By Sunday, some of the pre-made items look quite weary, and we can only guess what happens over a three-day weekend. Weekends are generally fairly quiet at St. Jude though for some reason it was quite chaotic this evening, with families lounging and small children squealing down the halls late into the night.
Aidan has played with one of the siblings several times now. The boy likes to wrestle and the two of them roll around quite a bit with one of us eyeing them nervously but restraining ourselves from intervening. We encourage Aidan to set boundaries and sometimes have to direct them onto a less dangerous surface (beanbag chair!). Although Aidan normally likes to jump around like a lemur, we were concerned that he was being coerced into physical play rougher than his comfort level. He chirped that he likes when the other boy jumps on him and wrestles him “because each time he does it, it makes me stronger.”