Thursday, January 19, 2006

Finally, here is a family picture taken after the race. I could say so much more about the three people in the picture with me. I don’t have the space or time today. So I’ll end by saying I’d be nothing without their love and support. I love you, Julie, Sophie and Jake.


This second image is of Nancy and me after we completed the race. Once again, Jacquie is with us. Let me just say this about Jacquie. We’ve known a lot of CF Foundation people over the four years we’ve been involved, and she’s one of the best. Such positive energy and a real go-getter. Man, I sound like one of those old 50’s movies… “A real go getter, Charlie!”

Anyway, I wish we had someone like Jacquie in the Los Angeles chapter. This is not to knock the L.A. chapter, they really work hard. But they seem to have such a high turnover with their staff. It’s nerve racking.

I had the opportunity to speak with my coach, Robert, a little while ago. He called to congratulate me on completing the half marathon. He also tried to convince me that I would be able to run another half marathon this year. The guy is nuts, I tell you. Nuts!

He directed me to some pictures taken the day of the race.

This first one was taken before we started the race. From left to right are: Me, Nancy, Jacquie, from the CF Foundation, and my sister Beth. Don’t we all look happy to be there? Actually, our mood was excellent that morning. And like I said last week, I didn’t experience any nervousness before the race. If anything, it felt like just another day running early in the morning.

Tuesday, January 17, 2006

The legs felt better today. I can walk without as much of a limp. However, I am having extreme foot problems with my right foot. Yet another sign that my running days must be put behind me. I have received some very encouraging emails and letters over the past week. It was these kind words that helped keep me going on Sunday. Oh, there were a couple of times when I thought I might not make it, but I had the voice of my darling wife and the companionship of a new friend to guide me through the race.

On Saturday night, Beth and I went to the dinner being held by the CF Foundation in honor of us runners and we just happened to run into Nancy Seid, a woman who lives in Los Angeles and has a son, 13, who also has CF. Strange how we just happened to meet each other in the parking lot. This is a woman that our coach, Robert, suggested I meet up with because we shared a similar pace. Turns out, it was a great suggestion.

This was Nancy's first race and she was looking to just complete it. This was my last race, and I was looking for the same thing. We met up Sunday morning and she was kind enough to drive Beth and me to the starting line. After milling around for an hour and enduring a horrid rendition of the national anthem (sorry to the woman who sang it, but seriously, when you change key in the middle of the song, you've ruined the song), the race began.

We said goodbye to Beth and started running at a 3/1 pace. This was perfect for me because I felt very good early in the run. There was some stiffness, but I didn't think it would be a difficult run. Nancy and I commenced talking about our lives and I was interested to hear what it was like for her, being a parent of an older CF patient. We spoke about CF for a couple of miles, then gravitated towards writing. Turns out she is a writer and has had similar experiences with Hollywood types that I have.

That particular part of our conversation lasted for four miles, I think. That was what got me through some of the rougher stages of the race. That day, although it was cold early, the temperature rose quickly and I shed my clothes one shirt at a time until I was just in the singlet and shorts. But it was a gorgeous day to run. Perfect running conditions. Most heartening were the numerous volunteers cheering everyone on, including a nice size group of CF Foundation volunteers. That was great to see.

As I referred to, Julie called several times during the run. I can't tell you how totally frickin' awesome it was to hear her voice and the excitement coming through that tiny cell phone ear speaker. I wish everyone had someone that loved them that deeply. I am so damn fortunate. Jules checked in on me every three miles, it seemed, making sure I was doing alright. And Nancy made sure I did okay out in the race.

There was one thing I took away from running with Nancy. It was her strength and her positive, life affirming attitude toward life. Personally, I have let the negative statistics of this dreaded disease grip me too many times in the past four years. Fear. Anguish. They take hold of me and squeeze the life out of me. What good am I to Jacob (or Sophie, too) if I can't provide a positive attitude for them.
Nancy doesn't believe in the damned statistics. She won't look at them. She repeated something Julie and I have said to each other many times: The current life expectancy is based on someone who was born 35 years ago... before they had the breakthrough medicines and treatments they have now. CF patients are living longer and will continue to live longer.

No, I'm not living in fantasy land. I will never forget that this is a life threatening illness. But we have to think positively. Maybe it's not we. I do. I have to start living and thinking positively again. I need to shove the dark clouds aside. My son is going to live a long life, damn it.

This race, it changed me. I had some kind of breakthrough. Or maybe I just broke free. I don't know how long this will last, but it feels right to be thinking optimistically again. It feels like me.

At the end of the race, Nancy called home and spoke to her 13 year old son. She came back with tears in her eyes. She's lived with this for 9 years longer than us and it still brings tears to her eyes. The love for your child can make you do anything. Nancy completed 13.1 miles for her son. And so did I.


Monday, January 16, 2006

It's been along day. My thighs and hamstrings, and just about every inch of my legs is reminding me that I have not run since Thanksgiving. And yet, my knees have given me no trouble. Amazing.

Details about the race day will come tomorrow after I've had some time to put them into a coherent structure, but I will say this about getting through the race with no knee problems:

I could say that it was the new knee support I bought on Saturday at the race expo. Perhaps the specific design of it and the added support under my knee cap were what I've been missing all along. Or...

Perhaps it was really God watching out for me. Sure, my legs are aching like I haven't run in almost two months. But maybe the divine one was looking out for me yesterday, as if to say, "You're already going to be hurting, and you did complete the race. I'll help you out this time and take away the pain you were expecting."

Maybe that's too mystical for some of you. If God isn't your thing... well then, you can go with the former.

As for me, I'm sticking with the latter.

I also think he's telling me, "Look, I gave you this last race. Now give up the running, dude. You have to be able to walk for your kids."

That's all for tonight. I can't wait to tell you about the race and the wonderful experience I had.


Sunday, January 15, 2006

It's 5:30 n the morning. I've been up since 4:30. The hotel bed was murder on my back. Add to that the cramped conditions of having four people in it and you can pretty much figure out how well I slept. It doesn't matter, though, I got plenty of sleep the night before.

I just finished my complimentary breakfast and was about to head back when I saw this computer in the lobby. Last night I met a woman from L.A. who has a 13 year old son, named Jacob, who also has CF. We're going to run the half marathon together this morning. Luckily, the rain has let up and it doesn't feel too cold. I've decided to go with the shorts and skip the sweat pants. I mean, come on, it's only 13 miles, right? It won't take me that long.

When I got up this morning, I found three little notes that Sophie and Jake had written for me last night. Sophie wrote, "Dear Daddy, Go Daddy, Go! We love you...Mommy, Sophie and Jacob." Then she wrote a page of hearts and "x's" and "o's". Jakes was a page a squigglies since he doesn't know how to write yet.

I have the greatest family. When the time comes that I'm feeling weak out there today, I'll have their love to carry me through it all.

Listening to Bruce at this very moment. Can't think of a better way to end this entry....

May your strength give us strength
May your faith give us faith
May your hope give us hope
May your love bring us love

Today is for Jake. It's not about me, it's about the cause.


Saturday, January 14, 2006

Rain has hit and our trip to Legoland was aborted. The trip to Carlsbad will take place later this afternoon. I'm starting to feel some butterfiles about tomorrow. I guess that's a positive thing. Oh, and we have reached our goal of $7000 for the fundraiser, just under the wire. Wasn't sure we were going to make it and I think that was bumming me out a little bit. Now I can relax even more for the race.

Mom and Dad are in town, so I'm not going to write much more. Hope the rain lets up by tomorrow morning. Nothing worse than having to run in soggy shoes.


Friday, January 13, 2006

We're winding down the week and getting ready for our trip to Carlsbad tomorrow. The weather forecast predicts rain both days of the weekend. What is it with me running races and crummy weather. Either it's too hot (Honolulu), unseasonably cold (San Francisco) or frigidly cold (OC last year... and perhaps this weekend). Whatever. It'll all be over on Sunday and I can begin my search for a new fundraiser.
Beth and her family arrived to L.A. last night. I amazed that the weekend we planned so many months ago in August is finally here. As I've said before, I'm thrilled that they have traveled all this way to be as one family in the fight against CF. I'm a little surprised that I don't have butterflies for the race. No fear. Truly, I am not at all apprehensive about running on Sunday. Will my overall time be better than previous races? Sure. Right. Uh huh.


Do I care? Not in the least. Perhaps this is the first race for me in which the cause is more important than the actual moment. To explain-- the past races were always about raising money and awareness, of course. And these efforts went on up until race day. But on race day, it became about me. It became about getting my best time and just completing the thing. Not this weekend. The cause is more important than the actual moment.


Monday, January 09, 2006

Not a bad day, all things considered. But it was a tough morning with Jake being dropped off at pre-school. He cried, a lot. And Julie was in tears. It's not going to be easy. And he won't eat. That's the issue that stresses me out the most. I don't want him to be hungry. Is it a trust factor with other people? Is it his enzymes making his stomach upset? Is he just being a stubborn 4 year old? I don't have an answer.

The race is this Saturday and I don't have any nervous energy. Julie has complete confidence that I'll have no trouble. I wish I was that confident. Although I know I'll complete the race, how my knee will feel throughout the day may be another issue.

Still, it's going to be great to have so many family members to cheer us on. I only wish I could have raised more money. That's like the nagging part in my stomach right now. I'm not sure I tried hard enough to raise money this year. Maybe I started too late. Not sure.

I will be glad when it's over though. It's one of those things that's been hanging over me the past couple of months. Once the race is done, I can relax a little (and write some thank you cards) and focus on writing for awhile.

Of course, the Great Strides walk is right around the corner, isn't it?


Sunday, January 08, 2006

So I'm laying in the middle of the living room with a two ton elephant standing on my chest, wondering, "How did this day turn so dark so fast."

Sophie's party last night was wonderful. She and her little girl friends all had a great time. At times, the laughter and screaming was like a group of banshees... But in a good way. A fun way. Julie did a fantastic job entertaining them most of the night. I checked in and kept Jake occupied with "Spider Man" on the mini DVD player.

Then, after waking up around 6 am, they played for another good four hours. Amazing, the amount of energy they had. Finally, I took Sophie to see "Lion, The Witch and the Wardrobe" with Max, Zach and Kyra (who had come down the mountain for the party).

So how did I end up curled in a ball in the living room? Well, I shouldn't have done the bills. The hoolidays have caught up with us. I get so stressed about money and I sometimes feel like it's a boulder I can;'t get out from under. I just feel so much dread and I'm tired of it. I tired of being so stressed. I'm tired of being bitter. But most of all, I just so damn tired of being scared.

Julie is torn about sending Jake to pre-school beginning tomorrow. He's nervous and I know that she is very sad that he's starting some kind of schooling away from home. Their lives will never be the same. It will never be just the two of them alone all of the time anymore. Even as I write this, I'm wiping tears away because it means that Jake is getting older.

There's a part of me that wants him to always remain our little boy. But there's also this part of me who wants him to grow up. I want Jake to grow old, to be a hundred. It's a defiant part of me. I want to prove all of these CF experts wrong. And I want to prove it to them sooner than later. I want him to grow up to be stronger and healthier than they ever could have expected. That's the optimistic side of me. That's the part of me that prays for the best. And then there's the other side... the darker side...

Maybe it's the reality of the race being this week and I'm just being sensitive. I'm burnt out. I need to step away from the big fundraising for a bit and get some perspective. But doing that will bring the guilt. Guilt that U''m not doing enough. Guilt that I should be helping find a damn cure. I hate the guilt, almost as much as I hate the dread.

Tonight, it's a no win situation. I'm going to have to go to bed and curl up next to Jake and pray for his little body to stay strong and healthy forever.


Thursday, January 05, 2006

It’s Sophie’s birthday. 7 years. How did that happen? When I watch her, she’s grown up so much, maybe more than a typical 7-year old should be asked to. And yet, she still has her little girl ways. While she plays games with her dolls and feed them bottles and gives them naps, she still sleeps with a blankie and can’t get through the night in her own bed.

The picture is one of my favorites from when she was a lot younger.

I still recall the events surrounding her birth. Julie and I spent the day and night before she was born in the hospital. Jules had been dehydrated from a bout with the flu the day before and her doctor wanted her admitted to get fluids back in her body. When Sophie’s heartbeat wouldn’t stabilize, the doctor decided to induce labor. That was a long day, and I wasn’t the one in labor. Julie was miserable. How do women do it? She got no sleep, was in agonizing pain, couldn’t lie down for very long, and there was nothing good on television (that’s a joke).

The next day (the 5th), the doctor visited and determined that Julie had a partial Placenta Abruptio and that she wanted to do an emergency cesarean section. It was hectic, scary, and confusing for a couple of hours, but in the end, Sophie was delivered and in our arms in recovery.

Budd, Karyn and Max were there. My mom and Dad drove in. And Julie’s brother Michael (who, at the time, was living in California) was on hand as well.

The night, after our family left the hospital, Julie and I were getting ready to try and sleep, I happened to look down in Sophie’s cradle and noticed she was having difficulty breathing. Earlier that day, the same thing had occurred and our nurse instructed me on how to help her cough up some of the saliva she’d swallowed. After several attempts, she wasn’t getting any better. Like the hand of God was there with us, our nurse happened to check in before she left for the night. She took over for me, and after two attempts, she ran out of our room calling out “I‘m taking this baby to the ICU.”

After a moment to let this sink in, I wandered away from my bedridden wife to find the ICU. I remember walking blindly down the long white, sterile hallways and an eternity passing before I found the secured doors for that room. You have to buzz into this room and when I spoke through the intercom my voice sounded like someone else’s. This wasn’t happening to me. She was just born. The doors swooshed open and a nurse intercepted me, leading me into a small waiting area. However, I caught a glimpse of the doctor and nurses gathered around my tiny infant, working furiously to revive her. What must have been five minutes felt like five hours. A television was on in the background. I sat there staring at it, not knowing what to do... not knowing how to act. One thing that never entered my mind, though, was whether she’d live or die. She couldn’t die. I wouldn’t let her.

Finally, the doctor came in and was very pleasant. “She gave us quite a scare”, he told me, with a slight smile on his face. He must have been happy to save a life. He led me to Sophie, who was now on monitors and in a special, Plexiglas case. This wasn’t real. Those baby classes never brought up this scenario. I looked down at her helpless little body and was numb.

I returned to Julie’s side and we prayed together. I prayed all night. Was it a heart defect? Were her lungs all right? At exactly midnight, the clock in our room stopped. We both froze. I raced back to the ICU to make sure all was well. Sophie was still fine. It didn’t sink in until I called my brother to tell him what happened. As soon as he heard my voice he excitedly asked, “What’s happened?”

I lost it and could barely get the words out. Sophie nearly died.

The next morning, we went to ICU and she was doing well. Sadly, they began her on a series of antibiotics that needed to run their course over 10 days. So, we were unable to take her home with us that day or the next week. We would make round the clock trips to the hospital to feed her (even in the middle of the night). And she responded wonderfully. When we finally got her home to our 2 bedroom in North Hollywood, the path to parenthood felt complete. We truly were a family.

In a strange way, what happened with Sophie prepared us for what we would go through when Jake was born.

I sometimes wonder if the ordeal she went through changed her or affected her in some way. I know it altered my view of how fragile life is and how we need to appreciate the loved one’s and good fortunes we all receive. Sophie is a special little girl with an enormous amount of love to share with everyone. I love her dearly and I am so proud to be her daddy.

Happy birthday, Sophie.

Wednesday, January 04, 2006

Here is my follow up letter...

January 2, 2006

Happy New Year!

It's hard to believe the holiday season has come and gone and that the Carlsbad marathon is just a few short weeks away on January 15th. There is still plenty of time to contribute if you haven't yet had a chance. Hopefully, the weather will hold up and the race conditions will be relatively pleasant.

So far, we've raised $4000 and my goal of $7000 is definitely achievable. I hope you'll once again consider helping to find a cure for CF and putting an end to this horrible disease.

There are two ways to contribute.

Send me check made out to the Cystic Fibrosis Foundation.
22331 Los Tigres Dr.
Saugus, CA 91350

Or, you can go online and make a contribution at this website:

As I've said in the past, any donation is greatly appreciated by the entire Malchus Family and all of the other families affected by cystic fibrosis.

Thanks for helping out!

Another morning in which my intentions to go riding were thwarted by responsibility (plus, it's pretty damn cold out there). Up at 6:00, I was dressed and ready to go when I thought the morning through a little more clearly. Julie had to get up and get going in order to take Jake to a pre-school meeting. If I'd gone riding, she would have had to done breathers, get Sophie ready and get Jake ready primarily on her own. Oh well, I guess I'll ride tomorrow. At this point, I'm not sure how much more I can do to prepare for the race. Either I'll be able to endure the 13 miles, or I'll collapse in a pool of my own tears.


Tuesday, January 03, 2006

I cried last night. It’d been awhile since I broke down and prayed to God. Funny how art can pull things out of you that you’re aware are swimming under the surface, but you have been able to keep at bay. After watching a heartbreaking episode of Deadwood, the phenomenal HBO western series, I was so affected that I couldn’t stop the tears from coming.

In the episode, a main character’s son dies, tragically. Though, is it anything else but a tragedy when a child dies? This boy’s death was sudden, violent and unexpected. However, it made me too aware of my own son. My Jake.

Maybe because it was late, or because I was up, alone, at 12:30, but the tears came and I was overcome with the need to drop down and pray. I haven’t been the most religious man in a couple of years. Those lingering pangs of anger caused by cystic fibrosis and the how’s and why’s continue to hold me back. But last night, it was all I could do to hold back… to beg for mercy.

But that’s the thing… what can God do? Jake’s illness is progressive. It’s not going to go away unless a cure is found.

Lately, he’s had a more noticible cough. Julie says she can hear a difference in the sound of his cough. At first, I couldn’t. But by the end of my vacation, I noticed it too. It eats us up inside. In some way, he’s gotten worse.

You do everything you can, within reason, means and energy to make sure your child is healthy. We are good parents. Ahh, but that’s the thing about it, no matter what you do, CF is going to continue to attack his body and he’ll gradually get worse.

Remember my resolution to smile more? It’s hard at times to do that when this monster is creeping around your child, latching on to him.

I cried last night. Not the first time. Definitely not the last.