9/26 update (long post; medically descriptive)

Okay, long time, no post. I won’t apologize for not posting. I was busy, and won’t say anything more. However, I will apologize in advance for the length of this post. As the go-to-gal, folks have called me for more detailed medical information, so I’m posting that here today.
I will also post an abbreviated version of this update, omitting all the medical jargon, so those of you reading this update don’t need to read the short version as well, since it will just repeat the same information.

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.

Stefan will go home with a pic line (an IV port), through which nurses will draw blood and caregivers will administer meds, like the antifungal meds he needs daily for 2-3 months. We’re not sure what all the procedures are that he will have to follow once he’s home, as we haven’t received his home care instructions yet. But he will still be under the doctors’ care. He will still have blood drawn, meds administered, and vitals checked. However, he will not receive blood or platelets at home; should he need them, he would go in. (Don’t ask me where, I just know that he’d go “in” to get blood or platelets.) The length of time that he will receive the antifungal medication depends on how intact and strong his immune system is, and whether there is “clinical improvement” – if he’s getting better. {There is a drug awaiting FDA approval called pozaconazole that is an alternate medication, but Stefan does not meet the requirements for this drug. He will continue to get amphitericin B (Ambizone) once he comes home.}

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… Last Sunday when his face started swelling, Stefan was diagnosed and treated for a fungal infection. The treatment for both aspergillis and mucor follows the same procedures, just as they both present with the same symptoms. Though the doctors weren’t certain which fungus caused the infection, they treated it as though it was the worse of the two (by giving higher doses of the antifungal meds), but told Stefan (and Daniella) that it’s more than likely the “better” of the two, until lab work verified it with 100% certainty. They told S&D that they were hoping it was a fungus called aspergillis, which is a less threatening, more easily treatable fungal infection. However, after pathology and microbiology confirmed the results of the lab work on tissues pulled during Monday’s surgical debriedment, the Infectious Diseases doctor told Stefan the fungus is the more deadly mucor fungus.

Now, a word about mucor… Mucor itself isn’t deadly, but rather for Stefan, it causes a deadly infection. It’s a common fungus, found everywhere – in mold, in ventilation ducts, in the air. Normal, healthy persons with intact immune systems are able to fend off any infections before they occur. Stefan’s immune system is pretty much non-existent. He was not able to fight off an infection caused by the mucor fungus. In an immuno-suppressed patient (such as someone with leukemia just after their first round of chemotherapy), fungal infections are fairly common – but a mucor fungal infection is actually quite rare. An infection caused by aspergillis is easily treatable. One caused by mucor is much more threatening to the patient, because that infection is much more invasive. When a test sample is allowed to grow in the lab, both aspergillis and mucor present in nearly identical ways. Until a certain amount of time passes, when mucor grows in a unique way which differs from aspergillis, and that identifies the fungus as mucor.

The infection is in his sinus cavity. During the endoscopy, the infected tissue (mucosa) was scraped and removed, and some bone tissue was removed for testing as well. CT scans did not show any infection spreading to the bone, and MRI tests did not show any infection spread to the brain. However – there are NO tests which will conclusively show whether all the fungus has been removed from his system, just like there aren’t ANY tests which can show how much infection remains in his system. There are only tests which show that the infection is definitely there. There is no test which would show proof-positive that the fungus is no longer there. At this point, any tests that could have been done have showed favorable results (meaning no penetration into the bone or brain). In addition to more tests (CT scans, MRIs, blood work), the doctors will depend on Stefan’s body for definitive signs of infection: pain, inflammation, and/or loss of ‘use’ of a particular area.

The infection, left untreated (or undetected), could spread further. It could spread laterally, out towards his ear. It could spread down, to his cheek, mouth and chin. Or it could spread up, to his eye and his brain. Any infected tissue, bone, muscle or organs would have to be surgically removed. Think of the fungal infection as if it were gangrene… there isn’t a salve they can spread on it to make it go away – any infected tissue would have to be removed. Eye, cheek, ear, chin, bone, skin, muscle – any infected tissue. If the infection spreads beyond the mucosa of the sinus, past the bone, and into the brain – it would cause brain damage, and the infected brain tissue would have to be removed.

Immunity is both critical and essential in Stefan’s fight to clear the infection. Because this type of infection is one of the rarer causes of fungal infections in leukemia patients, there isn’t as much history to draw on. The ID doctor has treated cases of mucormycosis (fungal infection caused by mucor), but the success rate depends on the level of the immune system in the patient, and the stage of the infection at detection. Now, they caught the infection almost immediately (within 24 hours), but Stefan’s immune system leaves a lot to be desired. “Nothing is a sure bet from here on out. Everything is based on Stefan’s response to therapy, medications, and surgical procedures.” That is a direct quote from the I.D. doctor. The doctors can’t tell us with any degree of certainty what we can expect from day to day. We don’t know if he’ll need any more chemo (it’s likely). We don’t know when he’ll need a bone marrow (or stem cell) transplant (it’s likely). We don’t know when his white blood count will go up (soon). We don’t know if all the mucormycosis is gone (no answer). There’s just a lot of things we don’t know, and won’t have concrete answers to. So we take it day by day.

Well, that’s enough medical mumbo jumbo for today. I’ll post when I have more info.