I know it’s been ages since I’ve done an update on Riley, and I apologize for that. He has been doing relatively well, save for a persistant cough and post nasal drip that has bothered him since February, when he entered the maintenance phase of his leukemia treatment. Unfortunately, about a month ago, he started running a series of high fevers, which landed him back in the hospital. After a week and a half ruling everything out that they could, they concluded that he had contracted pneumonia but they weren’t sure of the cause, save that it wasn’t bacterial.
He’s spent the last three weeks on every antibiotic they could throw at him, but it hasn’t helped. This last Monday, they did a CT scan on him, and saw some unusual nodules in his lungs. Of course, the first fear of both my ex and I was cancer, but the docs have assured us this isn’t what it is. They think, however, that it could be a fungal infection, which would explain why the treatments thus far haven’t helped his pneumonia. A fungal infection is, of course, far from ideal. They can be difficult to treat in a well patient, let alone one who is battling both leukemia and pneumonia…but if it is a fungal infection, it would at least give us a path for treatment, which is better than not knowing and trying to ride out this mess.
On top of that, yesterday, he had an ENT visit, where they discovered that he has a severe sinus infection, a double ear infection, and also found weird nodules in his sinuses. The docs have decided that they have to do surgery, but have been clear that there is a very high risk involved because they have to sedate him and with his pneumonia, it could be a dangerous gamble. They don’t think he is well enough or strong enough to undergo two seperate surgeries, so the ENT and the pulminary specialist will be doing both operations while he is under tomorrow. Their plan is to clean out his sinuses, remove the nodules there, and remove a nodule from his lung so that they can test them and see what is causing them.
I am unbelievably stressed. I know that we have really good doctors, and I try to keep faith that everything will be all right, but it’s hard. My coworkers are encouraging me to take the rest of the week off, but I really can’t afford to do that. As soon as we know when and where they want to do the surgery, I will plan to be there of course. Right now, I am so tired…I have very little energy as is, and of course sleep has been difficult. My wife is amazing, however - she’s keeping things running smooth, as most evenings I come home and just veg out at the computer. I try to be as productive as I can be, but it’s tough.
On a positive note, I thought I’d share some things that have made me smile lately. The first is that Riley’s hair has come back, and as we were told might happen, it is so different from what his hair used to be! His hair was straight and dark, dark brown before he began treatments. His hair is now more curly (not heavily, but definitely curled) and he has natural streaks of blond mixed with the brown - it looks like he had his hair frosted, LOL!
The second was just an amusing anecdote from this past Father’s Day. I picked up Riley and his big brother Jaden for Father’s Day, and since they had spent the past week at a summer camp for kids with cancer and their siblings (they had facilities to accomodate Riley even though he was sick), I was chatting with them about what they did as I drove the 45 minutes back to my house. Jaden was telling me about his adventures snorkeling, and how he got stung by a jellyfish. He joked that he was afraid at first that it was a box jellyfish - and then Riley piped up from the back seat that he was afraid of box jellyfish too. Being a typical older brother, Jaden said “Quiet, Riley, you don’t even know what a box jellyfish is!”
Indignantly, Riley bucked up and said, “Yes I do! They are a jellyfish and they have box in their name! They are in the ocean and Australia! If they sting you, you can die, but you can stop it if you pour vinegar on your legs! A little girl almost died!”
Jaden looked back at him, incredulous, then turned to me and shrugged.
“I guess he DOES know what they are!”
Hehehe - he’s a sharp kid, Riley. Apparently, he pays attention to those documentaries he watches at the hospital!