My son will be going into surgery tomorrow...

Howdy all,

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!

Sending happy, healing type thoughts your way, Woeg.

I’m keeping Riley and your family in my thoughts this week. Here’s hoping for the best possible outcome.

Hoping for the best too!

You and Riley and your family are in my thoughts and prayers.

He’ll be in my thoughts.

Worry not, for I am watchful.

I’m sorry about all the complications and wishing your family the best, Woeg. I hope this is the start of a turnaround for Riley.

You are going through a huge ordeal of unimaginable proportions, and I wish you and Riley and all of your family and loved ones strength and a return to happiness.

Hoping it all goes well, and hoping for quick healing.

LOL on the jellyfish - he sure showed his knowitall big brother :D.

Not so LOL on the surgery. I’ll be thinking of you guys tomorrow.

That’s more than I could have told you about box jellyfish. Thinking of you both today.

Prayers for Riley.

Good luck and good thoughts!

Sending out thoughts of luck and a wish for speedy recovery!

Everything went well, I hope?

Any updates? I hope all is well.

Bumping. Nothing new on the Caring Bridge journal either.

Hey all! Sorry for the delay - been crazy busy at work, and have had no down time to post at home.

Thursday morning, we went in for surgery. Riley wowed the whole surgery wing with his outgoing personality, singing the entire theme to Victorious during his pre-op, complete with hand movements (he would have danced, but he had to sit mostly still). He literally drew a crowd of nurses and attendants, and the male nurse who was doing his pre-op seriously watched with his mouth gaping, before everyone broke into light applause and smiles. The guy was all smiles after, and couldn’t stop talking about how he had never seen a child so bold and outgoing, and not nervous before a surgery that he clearly knew was a surgery - when asked why he was there, Riley was able to explain to him pretty well what he was going to be in for! Pre-op finished, we had to wait a bit for the anesthesiologist (sp?) so we played in the play room, where he made quick friends with two other children there for surgeries. Finally, the anesthesiologist arrived, and I was ushered off to the waiting room.

In the OR, the surgeons made the decision to try a less invasive surgery first, before going with the more invasive and more dangerous one originally planned. Their thoughts were that, if they could manage the minor but more difficult to perform less invasive surgery, Riley would have a much easier time recovering from it, but if they couldn’t, they were still there and able to go with the major, more dangerous surgery. Thankfully, the less invasive procedure was a complete success - his main surgeon was absolutely thrilled that it went so well, telling us that it is very rare to have such a textbook perfect, problem free procedure as his was. They were able to drain and flush both his ears, install tubes in his ears, drain and flush his sinuses, and his lungs. In the process of all this, they were able to take a lot of samples, including one nodule from the lungs, that they are currently testing for pretty much everything, from common bacteria to household cleansers, to try and figure out what the culprit behind this long bout of pneumonia is. We will get some test results back this week, and some over the next three months.

Because they were afraid of him coming to during the difficult procedure, he was given a pretty strong dose of anesthesia, which kept him out for a couple hours after the surgery. When he came to, he was very much not the smiley happy Riley he normally is - the best way to describe him was as a little, surly, beligerant drunk. He was especially angry with his mom (my ex), and was a bit verbally abusive, and he kicked her purse off his bed and across the recovery area. Alas, this is a pretty common side effect of anesthesia on him, but within about 40 minutes of coming to, he was back to his normal happy self. Not too long after, his oxygen levels stabilized, and they cleared him for release.

We got to see pictures of the gunk in his lungs, and it was pretty gross! Thick, white mucus lined his bronchial tubes, and flowed like rivers of pale snot - gross! The docs were able to flush a lot of it, but obviously, there is still some there. Hopefully, these tests will help us find a way to fight it. Riley was able to spend my custody weekend with me this past weekend, and we had some good down-time together, snuggling, watching movies, and being close. We even went to see Brave, though he had to wear a mask the whole time to minimize breathing in any additional germs.

So that’s where we stand! As of last night, he is doing great. This Friday, they will check his levels and decide whether we can resume his cancer treatments or not. The doc is very hesitant to do so till we knock this mess out, as the treatments for his cancer could make it impossible for him to fight the pneumonia. It’s a delicate balancing act - the longer they wait on the cancer treatment, the more aggressive they will have to be when they pick it back up.

Thanks again all, for you thoughts, prayers, and friendship - I really can’t say enough how much a comfort my Doper friends have been through this whole thing. Love ya all!


Yay! Thank you, Woeg.