Completely random photos of Mikey “back in the day” — check out his rat tail YIKES!

Since I haven’t taken any photos this week, I thought I would post some old ones of Mikey from the early 80’s.
d
Yes he was actually “pro” when he was a kid!

WOW. I was amazed. Johnny actually got chemo today. I was completely unprepared for it, I certainly didn’t anticipate his counts to be high enough, and if they were, I didn’t think he could get chemo with mouth ulcers. But he did (his ANC was 890!), and I am glad. Johnny was NOT in a good mood, didn’t want to be at the clinic, and let everyone know it. Anytime someone said “hi!” or even looked in his immediate direction, the outwardly friendly person was greeted with the STINK EYE — big time.

Last night Joey and Sophie both spiked fevers to 102.7 — there’s that number again. Mike is out of town, so I called him and asked if the thermometer was broken on “102.7″, since each time I take someone’s temp, that’s the number that I get. He laughed — I didn’t. I didn’t know what to do with the kids, Johnny was scheduled for clinic today, and although most families bring every kid they have to clinic whether they are well or not, I was not about to do that. I called Mike’s mom and she came to the rescue. I kept telling her last night, “it will be a quick visit, there is NO WAY Johnny will make counts…” huh! Famous last words… I didn’t bring the camera, his favorite pillow, or blanket. I really had no intention in staying (either did he).

At least we can move forward with his treatment, and he seems to be doing well right now too. Each time he gets a LP (lumbar puncture), I always go over his meds with the nurse “okay, he gets one fentanyl, and two versed”. Today was no different, except, this time our nurse only gave him one versed (the fentanyl and versed help with pain and memory of the procedure). During the procedure I noticed his eyes were still WIDE open, and that every time the doctor did something, they would open wider, and I noticed his pupils were very dilated too (could have been from the drugs, but normally he’s asleep, so I wouldn’t know). I asked the nurse if she gave him the other versed and she said “no, I usually only give them one…”. I quickly told her I want HIM to have another. She wasn’t happy with me, but did it anyway. I know she was probably thinking “YOU need it, not Johnny”, but I didn’t care. I don’t want him to remember a THING about spinal taps — EVER. Having his eyes open, and looking around completely aware of what is happening didn’t make me feel comfortable. Johnny would never say a thing, even if he wanted to. He just wouldn’t. So I did for him.

Anyhow, Mike’s mom had dinner ready when we walked in the door, and said she scheduled her cleaning lady come tomorrow for me! cool. one less thing I have to worry about. Sophie seemed fine all day, but Joey didn’t move, and still has a fever. I made him an appointment, and hope that it’s nothing. I am a little worried that he hasn’t moved from his bed since yesterday after school, that’s what happened to me when I was 13 and found out I had mono. I will make sure they do blood work on him, I will bring the kleenex box — Joey doesn’t do needles well and I fear there will be a lot of tears. I’ll update more after his visit.

Friday night after Kathleen (Johnny’s tutor) left, we had plans to go to Galveston for the weekend, but as we were talking, we noticed Johnny started to look very flushed, I took his temp and it was 102.7. I called TCH and told them we were coming.

On Wednesday, the doctor’s told us that if he runs another fever above 102.0, come in to get more antibiotics, then go home. Well, go home if his counts were still good, and of course they were low — 640. Which I think is really good for Johnny, but it’s actually neutropenic (low), even for kids with cancer. So they wanted us admitted. BUMMER. I told them Johnny’s birthday was Sunday, but it didn’t help — we still had to stay.

The cool thing is, since Johnny doesn’t have his port anymore, if all of the blood, streep and flu cultures come back negative, and all other signs point to a virus he can go home. Especially since he doesn’t have a port anymore (which can be another source for infection)! I’m so glad he wanted it out, otherwise we would still be there — as long as a child is running a fever (and they have a port), they stay until 48 hours after the fever is gone. Right now, Johnny is still running a small fever — anywhere between 100-101, nothing too serious, it just has to run it’s course. The other cool thing about not having a port is, they don’t run fluids automatically — since he has an IV in his hand, they don’t like to hook the kids up to anything unless it’s really necessary.

On Sunday TCH had sent Johnny balloons, a cake and Legos, it was very nice. AND they let us go home — even nicer! I told the doctors that I wanted to do the right thing for Johnny, but if it looked viral, I was more than willing to go home and ride it out. I also told them his BIG party was on the 29th — so if we had to stay all day Sunday, we were good with it. The doctor’s really felt bad for him, made sure it was viral, said he looked good (good thing he still had a little sun on his face from Easter weekend), and sent us on our merry way. Johnny is scheduled for a spinal tap and vincristine on Wednesday, so we will find out how his numbers look then, and if he is even able to get chemo this week. It would be cool if we skipped this week, and got chemo next week, after his party. You never know how each dose will effect him.

Anyway, we are home for now, update more later!