9/26 update (shorter post)

Okay, long time, no post. I won’t apologize for not posting. I was busy, and won’t say anything more.

Went to see Stefan on Sunday. He was looking well, considering what he’s been through the past few weeks. He said he’s not in pain, in any specific area, but his whole body is achy. He’s tired and sluggish from all the meds, not to mention all the interruptions in the middle of the night. He hasn’t been getting a “good night’s sleep” for three weeks in the hospital (not to mention the week before he went in, when he was home sick and feverish). It’s no wonder he’s tired and sluggish, even with all the medical intervention (chemo, meds, surgeries) and interruption (bathroom visits, nurse visits, etc).

Positive things: Stefan should be going home late this week, if his white blood count numbers are where the oncologist would like them to be. He’s gaining some weight back. He’s got color in his cheeks. He is anxiously anticipating his return home. His daily laps around the 15th floor have increased in number, daily averaging about 30. He’s still not being fed intravenously, although his appetite isn’t quite what we (his family) would like it to be. Daniella nags him about eating at every meal, and I’m sure he’s quickly tuning her out, even though he should be eating more than he is. On the other hand, I’m sure he’s longing for a home-cooked meal, and that his appetite will quickly return once he’s returned to the comfort of his own home.

Speaking of returning home… Just because he’ll soon be back at home and not in the hospital does not mean things can go back to how they were. The Infectious Diseases doctor I spoke with on Saturday has told me that it is imperative that we maintain a vigilant watch out for anything that can get past Stefan’s weak immune system. Any visitors the first month should be limited to essential visitors – doctors, nurses, caregivers, and immediate family, and should be limited in both number and duration. All visitors must wash their hands thoroughly before any interaction or contact with Stefan. Any sick persons should not have any contact with Stefan. Anyone who has frequent contact with Stefan (defined by the ID doc as more than once a week) is advised to get a flu shot as soon as possible.

Stefan’s immune system will take much time to grow strong enough to fend off common germs. It may take anywhere from two to six months. Doctors are encouraging us to keep visits down to a minimum when he first returns home, to give his body a chance to build up his immunity. As he slowly gets stronger, he can have more visitors come see him. And if doctors’ advice isn’t enough, think of it this way… You really want to go see Stefan. Would you rather go visit him now, when he’s first home, but weak? Or would you rather be able to go see him whenever you want, months and years from now, when he’s still home, but much stronger? I know your answer and mine are the same – we want him to be with us for a very long time. And the only way to ensure that he will is to minimize his exposure to germs that his body cannot fight right now. And one of the best ways to do that is to limit the number, frequency and duration of stay of his visitors. When he gets home, call him and talk to him. Send him a card. But please give him some time to build up his immunity before receiving a multitude of visitors.

Negative things: He’s beginning to lose his hair. His face is still gaunt and drawn, so he looks like he’s sucking his cheeks in. His immune system is still very weak. His blood count isn’t up to where it needs to be – yet. He’s still receiving platelets and blood, along with his saline IV. He also is on a diuretic med. And he’s receiving potassium supplements via IV drip, because his electrolytes are out of balance. And of course, he’s still on the antifungal med, amphitericin B. His fungal infection was not caused by the aspergillis fungus, as first reported. It was caused by the fungus, mucor, For more detailed information, read the long version of today’s update.

That’s about it. I’ll post more info when I have more info to pass on.