Repetition

I was looking over this whole blog and I notice that most of my posts begin with "I haven't posted in awhile." I don't post very often. I started this blog to help myself through a tough time. It's not quite so tough now. Ronnie has another MRI in 2 days and I'm not concerned. OK, I'm a little bit concerned about getting him there and I know that it takes awhile for the sedative to wear off and I'm worried about getting the other boys to their baseball games on Thursday and I'm always just a little bit worried about the effects of the sedative but he's been through it twice before without much difficulty, so they are minor worries. I tell everyone about Ronnie too. I can't help myself. Who wants to hear that someone else's kid has a brain tumor? I mean really. But I feel the need to tell people. OK, I'm not actually stopping people on the street but I do tell most people that I come in contact with on a regular basis. It has consumed my life for the past 6 months and I'm chatty. I think if he weren't doing so well I'd be more close-mouthed but maybe not even then. I'd probably want everyone I know to have a good memory of Ronnie. I guess that's it too. Look at this kid, have a good memory of him. He brings me hope, I want to share.

Keep going?

Well, I haven't posted in awhile. My Marathon training hasn't gone well despite some initial success. I overcommitted to some theater activities, the older kids all have Little League games seemingly every night, and my husband is out of town for most of June. Other than that, I've got lots of time! Nothing has really been going well, for me at least, I'm treading water in every area of my life it seems. Ronnie however is doing great. He has another MRI next week. I'm just not worried about it. Should I be? I certainly hope not. I was talking with another mother whose daughter has the same thing Ronnie has. The little girl is about a year older than Ronnie. She's doing well too. Ronnie is about 2 months farther along in the treatment. She just had her first follow-up MRI and the treatment has worked for her so far too. Her mother said that although she's pleased, she's not dancing in the streets about it. I realized that I was, dancing in the streets that is. Ronnie's first MRI results so changed my perspective. He's not going to die, at least not now, and that's what matters most to me. Anything else can be dealt with, including handling all 4 boys with school, baseball, chemo, and MRIs without my husband around to help. But I'll be tired. And probably a little cranky.

In other life news, the second doctor scarf is almost finished. I'd love to have it done by Thursday so I can deliver it while I'm at the hospital for the MRI. My play did not make the final cut for the festival in NC but I'm going down there anyway to see the family. I'll probably go to the theater festival too because some friends did get in. I produced a piece for the Boston Theater Marathon this year. Sadly, that did not go well. It looked beautiful (I put a kayak on stage) but the actors forgot their lines and some sound cues were missed and the playwright was not happy. Still, he could have thanked me for my efforts anyway. When someone spends way too much money putting on your 10 minute play, you should offer some kind of thanks even if it doesn't go well.

Marathon Training

Well, I knocked a whole minute off of my mile time in just one week. I ran two straight 12 minute miles last week and then Ronnie caught a cold and I'm directing for a play festival and Tommy and Jack both have little league games and birthday partys in the next two weeks and . . . I'm going running this afternoon when I get home. Still, ran for 24 minutes straight and made it 2 miles. I just need to do that 13 times in a row!

Whenever I start to get too complacent though, Ronnie likes to shake things up. He caught a cold which caused some scary rapid raspy breathing. Then it went away. Then it came back. He timed the relapse well. Tuesday night so that when we went to hospital on Wednesday they could order a chest x-ray. No pneumonia but probably some kind of bacterial infection in the bronchial tubes so he's getting amoxicillin this week. He's doing better already and we get two weeks off from chemo. Hooray!

In theater news, my play Cloud 7 has made the finals for a festival in Carrboro, NC, just a stone's throw from Durham (my hometown), and it would just be way cool to make the last cut. It would be a great excuse to get home for a few days this summer. I'll have to work around Ronnie's chemo schedule but, if the play gets in, I'll make it happen, somehow.

Motivation

It's all become so much a part of my life, this brain tumor thing, that if I'm going to keep blogging, I really need something else to discuss. As long as Ronnie continues to do as well as he has been doing, well, I'm just not obsessing over maybes. He's a happy, charming, wonderful kid who just happens to have a brain tumor that isn't affecting him all that much. At least not yet and we continue to hope not ever. Still, we have been blessed by friends, family, and some truly wonderful people in the medical profession. One of the great positives of the situation is the people I've met at MGH. Which brings me to today's post.

I'm going on record. As of this past Thursday, I am officially training to run the Boston Marathon in 2008. I will be running to raise money for pediatric cancer research with the MGH team. Starting next March or so, I will be hitting up everyone I know for donations. I will accept $1, no amount is too small. Yes, the cause is one that has affected me personally. I need something to motivate me to run 26 miles. Let me rephrase that, to finish 26 miles. I had mentioned that I'd give it a try but that with my current schedule, serious training was not in the cards. More than one runner told me about the Galloway Method. You incorporate walk breaks from the beginning. You even train that way. Run for 5 minutes, walk for 1, and you keep it up for 26 miles, eventually. I have timed myself in the mile (13 minutes, yuck) and I have run 1 1/2 miles using the method. I've started. I'm training on a treadmill until I can get my mile time down to, hopefully, 10 - 10 1/2 minutes. Then I'm going out on the road for longer than 1 1/2 miles. Wish me luck.

Jason Ray

I haven't posted in awhile because I've been torn up about Jason Ray. Jason was the young man who for three years donned the Ram costume as the mascot for the University of North Carolina. He was accidentally hit by an SUV as he walked along a highway in New Jersey the weekend of the Regional Finals and later died. I still can't believe it. As soon as I heard the news my heart went out to his family. The reports were that he had a head injury. I kept thinking of Eddie.

When Ronnie was in the ICU over Christmas suffering from complications from his biopsy, there was a 16 year old victim of a freak accident in the next bed, Eddie. He had fallen off the back of his friends car in a parking lot and suffered a severe head injury. His parents had been asked if they wanted to sign a DNR and had been prepared for the worst. He had already been in the ICU for 2 weeks when Ronnie arrived. The day we got there, the doctors started talking about tomorrow and longer term plans for the first time with Eddie's family. He opened his eyes on Christmas Eve. Eddie's family adopted me for Christmas and I got to know them well, the whole extended crew. Eddie went back to school or the first time the day before Ronnie's follow-up MRI. I call them the Miracle Buddies. When I heard about Jason, I started praying for another miracle. I really thought we would get one.

Why didn't we get another miracle? I know there's no answer to that question. Why did my son develop a brain tumor in the first place? Why did Eddie have to go through what he went through? Why did my miracle buddies make it? When Ronnie's MRI results came back, well, I always knew the treatment was going to work, I KNEW it. It wasn't that I didn't allow myself to consider alternatives, I knew they were there but somehow, deep down, I knew we weren't going to be in that position. At least not this time around. Again, why? Did I have faith? I expected a miracle for Jason and his family too though and it didn't happen. I don't want to get too religious on this blog. I rarely pray for myself and as an extension, it's been hard to pray for Ronnie. I have no qualms about asking others to pray for him though. I pray for the Jasons and the Eddies of the world. And when I do pray for myself, I pray for the strength to deal with what life hands me. I'm praying for that for Jason's family now.

Suddenly

I love theater. I love it so much I actively participate as a playwright, director, producer, actor (rarely) and I've even done costumes. I love it. Consequently I sometimes watch The Actor's Studio on Bravo. You know, the show with James Lipton that Will Farrell so brilliantly spoofed on Saturday Night Live. I don't watch it all the time but I've watched it enough to become familiar with the questionnaire he gives the actors at the end. One of the questions is what's your favorite word. Mine is suddenly, has been for a long time. I like it because is sounds like what it means, those double d's thud in the middle of the word then give way to a gentle ending. Suddenly, your life changes. That gentle ending gives you time to look around and accept the differences. Suddenly. Most good plays are about that suddenly moment.

Suddenly, of course, isn't always good. Suddenly your hopes and dreams for your children can change. You go from idly thinking about what sport they will be good at to hoping they'll have a chance to grow up.

And then suddenly things can change again.

Ronnie's first follow-up MRI was Tuesday. We got the results on Wednesday. I don't think things could have gone any better. The tumor has shrunk, significantly, even more than that, spectacularly. All his doctors were in a good mood yesterday, the nurses too. Hearing and speech development were suddenly being discussed. All things that seem to be fine but let's make sure. Long term plans are back on the table. We're not done with chemo, far from it actually, but suddenly we're in the best possible place.

The Little Things

I go along, managing pretty well most days, and suddenly something will happen that will just make me cry. It happened twice this week to me, and I accidentally made my husband tear up once. My husband is not, in general, a teary guy but Ronnie pinched his finger on a toy and I picked him up to kiss it better. Then I gave him a few more kisses and said, "I wish kisses could really make it better." This made my husband cry.

Me? It's usually something completely unrelated to Ronnie that makes me cry. This week, as a distraction, I was reading Bill Simmons college basketball blog. Normally I find him very funny and entertaining. I've mentioned his column on this blog before. Still, I'm going along, hoops junkie that I am, and wham, he hits me with it. He hates Duke. Not only oes he hate Duke but he hates Duke grads as well. Apparently we're a nasty bunch. Yes, sad to say, that made me cry. I want all those media types to just stop it, broadcasters, commentators, columnists, they've all done their 'Why I Hate Duke' bits. As a Duke fan, this year in particular, I just want to be left alone. I know, I should just stop reading sports websites, and the newspapers, and watch games with the sound down. Actually, that's exactly what I've done, starting with Simmons, I'll go back when he's writing about the Red Sox again.

The other thing that made me cry was a playwrights email list that I belong to. When Ronnie was first diagnosed I started sloughing off everything in my life that I didn't have to do. One of those things was the playwrights group that I run, Shadow Boxing Theatre Workshop. I immediately cancelled the spring meetings. Now, I'm finding that I have enough time and energy to get back in the game a little bit. I joined this list for encouragement. I'm discouraged. OK, I'll say it, even though some of my playwriting friends may eventually find this blog. Playwrights are in general the hardest to deal with prima donnas in theater. They are often not team players in what has to be a team effort to succeed. Sad realization, cancel or allow. Sigh. Allow. And yet, I continue to work with them because, because, because I love theater and when it clicks, there's nothing like live theater, nothing. I am also a playwright myself so I can be sympathetic to their plight. I've even had one of my plays poorly directed so I've been through that rite of passage that all playwrights must eventually experience. Still, I wish they weren't such a whiny group. I had a moment where all my past efforts to help in the play development process suddenly felt like a complete waste of time.

Well, since this post was pretty much all non brain tumor related thoughts, I'll leave it at that.