With the exception of a very brief, single day off late last week, Toby has been hospitalized now going on two weeks. During this time he has had surgery, followed almost immediately by a fourth cycle of chemo. For the past several days Toby has been back at Sloan because of a bloodstream infection caused by a bacteria. In addition to fighting neuroblastoma cells, the chemo that Toby gets cause his normal cells that fight infection to plummet to low levels, this in turn predisposes him to potentially life-threatening infections. Because bacterial bloodstream infections can be so dangerous, they are treated with i.v. antibiotics (usually 10-14 days), intially as an inpatient and then once under control, continued as an outpatien at home. Unfortunately, because Toby just completed chemo last week, his blood counts, especially the cells that fight off infection, are dropping and soon will be nonexistent. What this means is that it's unsafe to send him home (even on i.v. antibiotics) and that he'll have to remain hospitalized until his "counts bottom out" (hit zero) and then recover. Typically this takes about two weeks from the start of chemo to happen (in other words, Toby, Mooki, and Stephen are potentially looking at a month-long hospital stay.
Understandably, the three of them are frustrated, angry, and at their wits end. Mooki, much more eloquent and direct than I put it as, "we're imprisoned." Boredom only makes matters worse. How many times can Toby be expected to be uplifted by the prospect of another "tour of the unit."
Randy came by for music yesterday giving Toby a chance to experience something fun and different which he loves.
The upcoming days (weeks) will undoubetdly be difficult and trying for Toby and family. This will be aggravated even more by the fact that like most kids, as Toby's counts continue to drop, he'll have less energy, feel crappy, and likely will tend to withdraw. That being said, it would be great if any of you "Toby entertainers" are able to make a visit to Sloan to cheer him up. Please e-mail Mooki if you can make it to schedule a time.
A personal request, Toby isn't the only one who could benefit from some time with friends. For the past two and a half months, Mooki and Stephen's existence has largely been relegated to extremely long and stressful hospital stays. They take turns "sleeping" at the hospital on a fold-out chair and when they do get home every other night, they often collapse due to exhaustion and anxiety. Many of you have already visited, brought food, donated blood, shopped, organized, chauferred, etc... We are truly grateful. The road is long (if Toby's treatment goes as expected, it should last just shy of 600 days); during this current crisis, please try to stop by the hospital (e-mail Mooki for an appropriate time) so that at the very least, Stephen and Mooki can live vicariously through you.
Ed Clark, Christmas Guest
5 months ago