Monday, February 19, 2007


Two months into an 18 month course of treatment and things I wish I'd never needed to know have become somewhat routine. Today and tomorrow has grown to incorporate next week and sometimes next month. My little guy seems to be handling it all extremely well. I hope this means things are working. His blood counts are low. He's getting chemo - they're supposed to be low but otherwise he's an energetic, happy kid who eats pretty well. Although I must admit, he is getting by with eating more crackers/chips/cookies than I ever would have let his older brothers eat. I'm trying not to create a tyrant but I'm not 100% successful.

Wednesday is chemo day. Last Wednesday I drove through a snowstorm to get to the hospital. It wasn't too bad but on any other day, I wouldn't have left the house. Things change. But the good news was that Ronnie didn't need a blood transfusion, at least not yet. And it was Valentine's Day. We gave all the wonderful people at the hospital small boxes of candy.

I'm still working, 2 days a week, at my job - statistician with a health care policy research group. It is hard to concentrate. I get at most 2 work related tasks done a day. Still, it's enough to keep things moving along for the time being. I'm getting laptop soon. I can get things done in small bursts. Focus, I can do it for awhile but it's still hard to maintain long term. I think that might improve too.

Ronnie has his next MRI on March 20th with a March 21st meeting with the doctors. I'm not too nervous about it yet, but I'm getting there. As long as it's good news I'll be fine. Neutral news would also be OK. I don't even want to think about anything else.

Non brain-tumor related thought of the day: If you knit and you can be there, check out the yarnharlot and go to NYC on March 22nd. I'd love to do it. Maybe I will, but probably not.

Friday, February 09, 2007

A Comment!

I received a comment today, thanks Rich. I've mentioned this blog in passing to a couple of friends but I've told no one the title or how to find it. Ronnie has something called a Care Page at Mass General. I've been directing friends and family there to keep up with his progress. I started this blog for myself as a way to vent. I checked and my profile has been visited too. If readers have found me because they are going through a similar life event, I hope I'm some help. If there are people reading this and they'd like to check up on Ronnie with more specific details, his care page is and the page name is RonnieLee

Sometimes I find myself thinking the strangest things. At one point I was worrying over the fact that Ronnie will have a hard time getting life insurance later on. Ha! I truly hope that someday he has that worry. Another thing I cried about the first night after he was diagnosed was that I haven't taken enough pictures of him. I have tons of family candids but he's only had the formal "Sears Portrait Studio" type picture taken once. He still has most of his hair but he also has a shaved patch from the shunt they had to put in after surgery. Do I take him to a photographer or should I wait for it to fall out? Maybe I'll do both.

It's funny, some of the things that I think really ought to cheer me up tend to do the opposite. Someone brought me an article about the Janowers. The Janowers are friends of friends and their 6 year old daughter has a brain stem pilocytic astrocytoma, the same as Ronnie's. Her family has been instrumental in raising more that $1 million for the Brain Tumor Society. They looked at where the money was actually going and worked out a deal that at large percentage of what they raised would go directly to JPA. All impressive and good news and it should cheer me up. Certainly I plan to support Team Samantha but . . . I guess I just wish nobody had to go through this. I've said to the nurses at MGH that as much as I wish I didn't have to be there, I'd much rather be the only ones there every Wednesday. There are 7 infusion rooms in the pediatric outpatient cancer clinic. They are almost always full. I hate that.

Non brain tumor related thought of the day: I hope Peter O'Toole wins the best actor Oscar. I like Forrest Whitaker a lot and this year he might deserve it but I hope Peter O'Toole wins. It should be said that I've seen none of the movies. Usually I get to a couple but this year, well, I've seen Cars, Night at the Museum, Flushed Away, get the idea?

Monday, February 05, 2007

A Long Haul

I've realized as I'm now a month into the chemotherapy process that it will be a long haul. Friends and family tell me I'm holding up well. I can only say, I have to. Ronnie will be receiving chemo for 17 more months. Yes, there will be some breaks, but we won't be done until June of 2008. I can't fall apart now. Some days I might want to. Some days are better than others, but I've got to keep going. But yes, there are some days where it's not hard to keep going.

I've started knitting scarves for many of the medical personnel that are involved with Ronnie's care. I'll start posting pictures when I figure out how. One positive note, knitting all these scarves, I have a wonderful excuse to by cashmere yarn.

Mostly non brain-tumor related thought of the day: Any cashmere or cashmere blend yarn is a good thing.

Friday, February 02, 2007

I'm not angry

I've realized there is no should in how one feels when you're caring for someone who's undergoing chemotherapy. I can accept that anger is probably a common emotion. I'm not angry though. I check myself sometimes, is it hidden, am I supressing it? But no, it's just not there. I do find it unfair and I wish I could make it all go away but I'm not angry about it. That said, I am losing my temper at home at little more often and I'm slightly less tolerant of the day to day sturm and drung that all four of my sons manage to bring with them, but all of that is more from being tired than any underlying anger. I am tired though.

I measured Ronnie at exactly 27 months, like I said I would. He was 35 1/2 inches tall. That projects to 5'11'' when full grown. I hope I get to see that.

Non brain-tumor related thought of the day: In general, I don't think God cares who wins the Super Bowl, but the first Super Bowl after 9/11 was won by a team called The Patriots and they had a player, Joe Andruzzi, with two New York Firefighter brothers (both safely got out before the collapse). I always kind of thought God maybe cared that year. But then again, if he was paying attention this year, shouldn't the New Orleans Saints be there?