January 30, 2008

I am not sure what brings me to this page almost a year from my last entry. Perhaps I have been waiting for inspiration. I should be able to find enough of it here! The boys have begun practicing for spring ball after a (relatively) quiet winter around here. Actually, I guess it has been kind of loud, as there are babies here again. We have been caring for two foster babies that joined our family, however temporarily, last October. The first little one came three days after Sam broke his ankle trying to slide(?) back into first base. He was out, and his Wasco season was over. He had to settle for watching Gabriel's team play, which must have been infinitely difficult for someone like Sammy. First a cast, then a boot, and now he is nearly back in business. Funny how the broken ankle (for me) was almost a non-event. He handled it very gracefully (unlike the slide) and did not complain about having to sit out the entire basketball season.

So a foster baby was a welcome event to help Sam pass his time when he was only able to play sports via video games. Then came another, this one just two days old, at the end of October. A strange dichotomy was that I attended a funeral for one of my precious EI babies on the very day that our little angel arrived at our home. This led me to lots of thinking about what I should really be doing at this time: taking care of my own. I have decided to take a leave from my beloved job, to be with my more beloved family. In my early days as a mother when Elliott (now sixteen) was small, I often reflected on where I would be when my children were older. In some ways, I'm still in the very same place, perhaps with a more grateful heart. This is enough for me right now. Sam made the comment that he liked when I was home. So here I am.

I always enjoyed my days off. Cleaning and baking are joys, not chores, in my mind. The simple, silent rituals complete my spirit. As a little girl, I spent hours caring for my babies and rearranging rooms in my dollhouse. I remember during my junior high years, and perhaps beyond, taking trips with my mom on the train. We would go to the Clarendon Hills "Wee C" Shop to look for treasures to add to my dollhouse. My sister and I and yes, even Emmett, spent hours creating adventures for our four-inch families. I was thrilled to learn that my dad had made a connection with a dollhouse-builder who was willing to make a "dream house" for the caps4sam raffle. My dad's friend, Lee, has a wonderful talent for creating detailed and enchanted houses. I was able to visit the workshop to see the work in progress. The house will be offered by raffle and will soon be on display at the Park District. Watch the site for details about how you can see the house or purchase tickets.

God bless you all, and thank you for your continued support of this project! Stay warm and think baseball!

Love, Patty


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April 3, 2007

Looking at the marks on the doorway in our kitchen, I can see how my children are growing. Elliott is now six feet tall. As I write this, he has eight or nine of his "people" in the family room. I think they are watching "Sound of Music."

The response to the upcoming walk/run has been tremendous. My mom and dad are working tirelessly on each detail. I am overwhelmed by what they are doing. I am also profoundly affected by the hearts of this community. There is a "Sam friend," Kelly, who has taken the time during these past years to support our endeavors, to seek out our fundraising efforts, to sign the guest book, and to express her excitement for what caps4sam is about. Kelly, you are one of those people who really makes this a success, and we thank you.

Thanks, too, to the hard-working volunteers from the Phi Kappa Sigma fraternity; you have added a great spark to what the charity is trying to accomplish.

Six of the seven of us went to Mango's to celebrate report cards last weekend. Elliott did have a very respectable report card but chose to be with his "people." We ran in to Denny K., physical therapist extraordinaire from Northern Rehab (a great sponsor for this year's event). Denny worked with Sam two winters ago, when Sam was back on the basketball court the season after his surgery. Sam was having some knee pain, if my memory serves. Denny worked to do a gait analysis and showed Sam some strengthening exercises. The pain was completely gone within a few short weeks. During one of the sessions, we decided to try working on some scar mobility techniques where Sam had had his surgery. Emotions, pain, or maybe a combination thereof flooded over Sam and brought him (and me) to tears. I have not forgotten, nor will I ever forget, what Denny did at that moment. Sammy is such a tough guy. He didn't cry for brain surgery. The tears caught all of us by surprise, but Denny's natural reaction was to toss a towel over Sam's face. He gave him grounds to release what needed to go, in the most dignified of ways, behind the safety net of a white sports towel. That gesture of kindness still brings on my tears as I think of the compassion and care with which this man treated my little boy. It's a reflection of someone on higher ground, to whom I am eternally grateful. Maybe it seemed a little thing, and perhaps he doesn't remember. I'll never forget. I ate my raspberry truffle custard without thanking Denny out loud. I have moved through my days without saying thank you to so, so many others. I have thought it, and I have felt it, and I hope you have detected it.

Carlos Zambrano should just not pitch on opening day. He will be fine next time around. Baseball is back. Sam's Lightning opens the season on April 10. We have posted the link, which includes the schedule, to D/C Lightning baseball. Maybe we will see you at Cortland Park.

Blessings to everyone, and thanks for your continued support.

Love, Patty


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November 30, 2006

Really? It has been six months since I have updated this page, which I have done in my mind hundreds of times. Life at the Ihm house rolls on, pretty happily, actually.

I was waiting to update this page until after the Cardinals won the World Series. I have never in my life cheered for the Cardinals. This year was way different. We lost our precious Grandma Evie on July 6. She, too, loved baseball. Since she lived in St. Louis all of her life, she was a Cardinals fan. Every summer in my recent memory, Dan and I would take our little, then not so little family to visit Grandma Evie for our "summer vacation." We would go to the Magic House, the Butterfly Museum, out to lots of dinners, and also to a baseball game. We rarely visited when the Cubs were in town, but I always wore my Sammy Sosa jersey. Once I even got hit by a bratwurst, but it was worth it. Grandma couldn't make it to Busch Stadium, but she would sit by us at the pool at the Drury Inn. We would drink coffee (no matter what time of day or night) and watch the kids swim. She just loved my kids so much. They were her only great grandchildren, and for that they were very lucky. I really miss my Grandma Evie. I am convinced that the Cardinals won the World Series for her, or at least with her help.

Basketball has begun, and Sam has lots of little Lightning (from the 10U baseball team) players on his team. It will make the time pass until baseball season. Fall baseball has been over for a month now; withdrawal is hard. Sam and Gabriel both played on Wasco teams. Sammy was on a travel team from South Elgin. They were a great bunch of coaches and boys. He has told me that he misses Coach Petras (and Coach Sullivan), though:)

Now for the medical stuff: the news could not be better. Sam went for his six-month MRI on October 23. We saw Dr. DiPatri, Sam's excellent neurosurgeon, who expressed that as much as he enjoyed seeing Sam, he was recommending annual MRI's from now on. The scan looked perfect. It was a great day. The ever-delightful Tara from the Foundation surprised Sam with a bowling pin signed by Kerry Wood and lots of other Cubs and WGN people. We will try to put a picture of it on the site:) We returned to Children's for a four-hour EEG on October 25. I have a photo of Sam on my camera phone with electrodes all over his head. We met with Dr. Laux after this, and she reported that his brain activity is great. I think we knew that. It's good to get the official word, though. During the past month, Sam has slowly tapered off of his Carbatrol. As of last week, he is no longer taking seizure medication! This was really the last step to being back to regular Sammy. I think he is ready to dive for those baseballs.

He went to a lock-in a few weeks ago at church with his good friend, Logan Parson. Sam said that they were up late playing a game, and he felt weird, like he was in a dream... . He said he was afraid that he was having one of his confused-type seizures again. Then he told Logan, who said, "I feel like that, too!" I just cracked up when he told me that story. How well I remember those grade school sleep-overs, staying up all night and walking around like a zombie for several days thereafter. So Sam is great.

Thanks for caring and hoping with us. Sammy has a new design idea for the second variety of ski caps, which we hope to have available soon. It's going to be a surprise, so please keep checking in with us.

Please take time to enjoy those closest to you during this holiday season.

Love, Patty
GO CUBS!

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May 9, 2006

My biggest fear during high school was speech class. Sophomore year...Sr. Regina. I would lose sleep for several days, staying up late to try to memorize note cards. My teeth would ache all morning as I anticipated having to talk in front of 20 of my high school peers. 23 years later, I still dread talking to crowds. Sitting in a coffee shop with one friend is much more my style.

On Sunday, I decided to be a brave girl, to address the crowd at the Walk4Wisdom. Dan was nudging me from behind to stand closer to the microphone. I thought I would share the words from my speech; it's much easier to write than to stand in front of ... how many people were there?

Here's what I tried to say. I'm not sure what people heard.

"Thank you for taking time from your Sunday to join us in our efforts to fight pediatric brain tumors. My parents have worked since the vision began. Thank you, Mom and Dad, for putting your whole souls into helping others. Thank you to everyone who has contributed to our project: friends, family, and community, far and near; and the wonderful people at Dekalb Clinic, Kishwaukee Hospital, and Children's Memorial Hospital. I often wonder why this happened to Sam, and what it all means. I used to wonder if we were lucky or unlucky. More than a year out from surgery, I know now that we are lucky. I still wonder why others suffer from so many complications with their brain tumor diagnoses. We need to keep working to make sure that others are lucky, too. God bless you all, and again, thank you."

I really cannot express how grateful I am to be part of such a rich community, the greatest place on earth. To every person who even thought of Sam or the project, I thank you. Each volunteer, each runner, each walker, has helped to make a difference.

To quote my all-time favorite book: "It is only with the heart that one can see rightly. What is essential is invisible to the eye." Antoine De Saint-Exupery, from "The Little Prince"


OK, a couple of last minute funny things. Sammy's baseball team walked along with Sam and stayed for a while. Rocio from the Chronicle interviewed some of the boys, and they shared with her that the best part of the day was that they got to meet Garrett Wolfe! (Thanks for that one, Tara:))

The boys were using a metal detector to try to find a lost car key. I saw Sam as he was walking up the hill, and he said, "Mom, we used the metal detector to find the plate in my head." I don't think that's a good thing to do.

Many thanks to all who supported this effort. Please share your stories in our Guest Book. My mom is already planning for next year.

Love, Patty

PS -- I will post a schedule of the home D/C Lightning games in the next few days.

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March 11, 2006

Sam is fine. For anyone who heard that something happened to him during the Benediction, there is no need to worry. I was getting a coffee at the House, just before heading to school to pick up all the kids, when my cell phone rang. It was BeeDee at school, saying that they had Sam, and he had gotten very warm and they took him outside on the sidewalk. All kinds of things crept into my head on the longest ride to school. I also dropped the straw from my latte, somewhere in the car. I was an accident waiting to happen.

Sam was on the couch drinking Hi-C when I got there. He was a bit pasty, but otherwise just regular Sam. Apparently he had passed out on his knees, during the service. His buddy, Marc Dubrick (a doctor's son!) let the teachers know that Sam was in trouble. Ms. Weis thought it had something to do with the incense. She has never been to my house.

As we sat on that couch for a while, so many kids came up to Sam to see how he was. When we got home, Gabriel got a phone call from Lance Sauter, asking how and where Sam was. They just care so much.

In February Sam had a fine visit to Dr. Laux. She thought that since it was nearly a year since his last seizure, if his April MRI is clean, she may start tapering his medication. Honestly, I am afraid for that day. I know he's okay, right?


Hey, please join us for the Walk4Wisdom if you can. We are looking for help, support, and a clean-up crew. It's going to be fun.

Love, Patty



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January 18, 2006

It's the anniversary of some things in our family. January 18, 2000, we brought Sadie home from Korea. Last year, we visited the Korean restaurant a couple days early. Just about this time last year, shortly after 11 am, Dr. DiPatri was making the incision in Sammy's head. He had gone in for surgery at about 8 am I think, and Dr. Laux kept coming out to give updates. We sat, Cathy, Bob, Jackie, Matt, Dan, my Dad, and me, and drank coffee and watched the clock. There were others that came by, too: Jean, Mr. McBride, Tom O'Hare, and forgive me for not mentioning the others. My mom was home taking care of everything at the house, getting the kids to school, and probably lots of other things. At least I think that's how it went.

We are compiling a recipe book to support the eighth grade trip to Washington. Yesterday I was typing Chris Sauter's recipe for "Chicken Chili," thinking that it had been exactly one year ago that she had made that chili for my family. The day before Sam's surgery, we had gone to the Convocation Center to the Huskies Practice. The boys (and Sadie) got to shoot around on the court. Then we went home, ate that food (which we loved) and Sam, Dan, and I headed to Cathy, Jackie, and Matt's for the night. I slept in Cathy's bed (she's always so lovely, sleeping with Grace to accommodate all of us:) right next to Sam, thinking about what the sunrise would bring.

I am still overwhelmed by the outpouring of support; looking through the past notes on the guest book (some of them lost, but I can still read them, thanks to Beth Morgano's hard copy), over a hundred from this day last year, reminds me of the intense embrace provided to our family by this community.

The other day I was cleaning the medicine cabinet and surprised myself with my tearful reaction to finding Sam's bottle of steroids, which I know I can safely dispose of by now. Kim Bourdages reminded me that when you go through something big, you are working so hard in the moment to hold things together that you don't really have time to feel the effects until time, and the moment, have passed.

Please hold the date (May 7) for the Caps 4 Sam Walk 4 Wisdom in DeKalb. Dr. DiPatri may even be there. We hope to continue this fight for all others, in the spirit of hope and thanksgiving.

One year later, my boy is strong and my heart is grateful.

Love, Patty

PS - Not too long until pitchers and catchers report, if anyone was wondering.

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December 24, 2005

We left 35 minutes early for evening mass tonight. I tried not to make eye contact with Elliott as he tried to draw my attention to the two empty pews in front of us. It's just that last year, we arrived fifteen minutes early and had to stand. I was worried about Sam through the entire service. I knew by then that there was something wrong with him. It was hot, we had on our coats, and there was nowhere to sit, except one spot on the end of one row. The boys took turns sitting there. Then, and I will never, ever forget this, Jim Parson (who had probably arrived 35 minutes early with his family) left his seat and walked all the way to where we stood along the wall. He offered his seat to me, and invited Sam to sit by Logan. I'm not sure how it all worked out, but I was touched by his Christmas spirit.

So this year, we arrived early. For at least the last several years, Dan has been the cantor at midnight mass. The kids go with me to evening mass, and then I stay up (with my milk punch) and prepare for the morning while he is gone. I play "O Holy Night" over and again on the CD player. Tonight it is making me cry, but it still sounds beautiful.

Sammy is visiting a physical therapist for an issue completely unrelated to his brain. The therapist is a gait expert, and he is helping Sam try to overcome stress to his knees. He offered to try a scar mobility technique yesterday. We just were not prepared for what happened. Sam's tears... it must have hurt so much. We both struggled, and this excellent guy throws a towel over Sam's head. He was so respectful; I am so thankful for how he reacted. Our tears were an emotional release; everything came flooding back, and I thought of really one of the rare times Sam cried through his ordeal. The doctors told him he had a brain tumor, and that he would have surgery. He didn't cry for that, just that he would have to stay one more night in the hospital. He was probably going to miss Sports Center or something. Good night tough guy, and Merry Christmas to everyone.

Love, Patty


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December 14, 2005

I'm back again. It's a quiet morning, and I'm supposed to be writing reports before I brave the snow to head out for work. Yesterday, the school called for me to bring fresh clothes for one of the little kids who had had an accident. No seizure, just an old-fashioned accident. The memories are raw; the call from the office had meant something much scarier and very confusing last year. It's hard to let go, to teach your children to work out their issues for themselves and to allow the natural consequences to deliver important lessons.

Today, Gabriel forgot his lunch. Dan drove the kids to school, since I am scared of crashing in the snow (ever since a mean guy sideswiped me in April, I think everyone is going to crash into me). Gabriel was choosing to carry his lunch instead of putting it in his backpack (against my advice, I'll have you know). Just days earlier, another little person called me from school to bring a forgotten lunch (left in the car--put it in your backpack!!) When I delivered the lunch, I also brought crackers, peanut butter, and applesauce for future lapses. Not that I was anticpating them, it's just that sometimes I cannot (or don't want to) leave work, and I am trying to teach responsibility. I told the kids after school that they would have one time when I would bring the lunch. After that, peanut butter and crackers would be waiting for them in the office. Gabriel is not crazy about peanut butter. Why is this so hard for me? Instead of doing yoga, should I have blasted to school and delivered the lunch? My mom is probably calling the school right now, to the rescue. I think I have decided that if Gabriel calls (he gets one chance, as I said, and he has not forgotten his lunch this year) before I have to leave for work, I will deliver the lunch. Otherwise, I know he will be okay. He had a big breakfast.

It's hard to love your kids so much. If Sam forgot his lunch, would I feel guilty if his brain tumor came back, and I had made him eat peanut butter, crackers, and applesauce? But Sammy loves peanut butter. Do you see how crazy I am?

Love, Patty


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December 11, 2005

Really? December 11? I am very behind on my holiday preparations this year. I have been feeling that way ever since Kim Bourdages' Christmas card arrived about three weeks ago. We did take the annual photo today, so perhaps the cards will arrive on time. We have two more cherubs in our Christmas picture this year. Laura and Victor are staying with us for a while. My friend Kathy used to say how relaxing my house was (probably four kids ago). These days, chaos usually outweighs the calm, especially when I am on the phone. All six kids are at St. Mary now; we are blessed to have them in that safe and peaceful place.

Last Monday was an emotional day for me. I never know when something will flood back, as each day is now an anniversary of some of Sam's seizures. December 5, 2004, Sam left school early to see a urologist. I bought him a green beanie baby reindeer from Lehan's when I picked up the prescription (for Ditripan, that didn't work, of course). Then we ate at Street Potatoes, which used to be by the VCB. I still cry when I see that green reindeer. It must represent that raw fear that was so much a part of me when we couldn't figure out why Sam was all of a sudden having so many accidents. At school, basketball, anywhere, with no warning. How horrible for a ten-year-old boy. I'm just now able to write about it. His friends were so amazing. They knew. And they were nothing but supportive. Thanks, Mary and Logan, and all the rest of you.

Sam has an open and kind of gruesome spot on his scar. I nearly fell over when I saw it a couple of weeks ago. I made him wear a cap again for a few days, so he would leave it alone. The neurosurgeon asked me to first take him to a pediatrician before bringing him in to Chicago. So we went last Wednesday to see Dr. Cook, who made such an impact on us very early this year. It wasn't until after Sam's surgery that I found out that she had lost her husband to a brain tumor, not long ago. I see her as Sammy's angel. Anyway, she could tell right away that the spot was from a stitch from the deeper incision layer. It was irritating his skin as it made its way to the surface. I know that's gross, but it's actually wonderful news. Sam said no to Dr. Cook's offer to extract the stitch:)

Nobody has come forward to buy our house, but lots have called to see it, which has motivated us to try to keep it tidy. We are waiting for whatever is supposed to happen. Perhaps we are waiting for nothing.

My friend Kimberly (Emerald's mom) has created a soap to support brain tumor research. You can find it at www.edgeofthetub.com. Please tell her that Sam sent you.

Wishes to everyone for a peaceful and blessed holiday season.

Love, Patty

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October 31, 2005

All of my little spirits are gone to their beds. This is the first Halloween in my recent memory when Sam went out trick-or-treating with the other kids. He used to cry; he has always dreaded dressing up. So many Halloween evenings he spent at home with whichever parent stayed behind. On the nights that we convinced him to walk with us, he absolutely refused to wear a costume. So out he went tonight, in his track pants and t-shirt.

Sam is fine. Our MRI last Monday showed no evidence of tumor growth, and nothing extraordinary in his brain, except, of course, what is supposed to be there! Anne Seitzinger told me that the visit would bear good news, as it occurred on her birthday. Happy Birthday, Anne. Our next appointment is in February, just a check-in with the epilepsy doctor, and the next MRI will be six months out, on April 24. The Cubs will be playing again by that time.

Late evenings are so challenging without baseball. It all has to end at once, and that is hard for me. Cubs, Wasco fall baseball, and now Gabriel's practices, too, are finished for the year. I'm okay, though, now that some time has passed and Sam is still doing well.

We had fun at St. Mary School tonight, with opening night of our new concessions stand. We have basketball to watch for a while now, to get me to spring training. Go Lancers.

Thanks to everyone; cap sales continue. We have recent word of a very generous donation coming our way from the Knights of Columbus; details will follow soon. We are grateful for your thoughts and prayers.

I really am happy for all of the Sox fans.

Love, Patty

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October 13, 2005

Since there is no good baseball on the radio anymore, I am listening to classical music again. We are enjoying the last few games of Sam's fall season; there's a doubleheader this Saturday, and the season closes with a tournament beginning next weekend. It has been wonderful for me, and for Sam.

My spirit is free as I have returned to my job in Early Intervention. My resignation from the inclusion facilitator position was not really met with resistance; the squeaky wheel was allowed to roll away. I fought, and I lost. I hope I made an impact, but I fear that nothing will change. I could not work in an environment that was not consistent with my beliefs. This new streak of boldness has surprised me. I really appreciate the flexibility and peace of my work as a therapist.

The Ihms have some news ... we are trying to sell our house. I just never thought we would ever leave this home. One cannot know what is around the corner.... We will stay in DeKalb; we are just not sure where, yet. I don't feel sad about it, because it is hardly the house that matters. It's just about who lives inside.

I'll send an update after Sammy's MRI, two Mondays from now. Please hold a good thought for him on that morning. It will probably be cold enough to wear your ski caps!!

Love, Patty

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September 19, 2005

Tomorrow might be the last day of my work. I have really been struggling with issues that feel beyond my control. I am tired of fighting the fight; my energy has left me. I miss my work with babies. There have been no words to write, as I have been sifting through my personal darkness. Maybe it was too soon after the stuff with Sam. Maybe I have a twisted notion of what I think is fair and just.

Before my kids went back to school, we spent an afternoon with our longtime Elmhurst friends. We went back to Chocolate Moon, where we had spent endless hours when our teenagers were toddlers. I used to sit there with Baby Sam while Elliott was at preschool. Wishing again for those days seems a pointless thing to do.

Sammy is great. I worry when I see him stare off for a few uninterrupted seconds, or when his eyes blink rhythmically. At our last trip to Childrens, Dr. Laux (the epilepsy doctor) let us know that Sam would stay on the seizure meds for 18 months to 2 years after his last seizure, which happened at the end of April, if my memory serves. It's hard to move on, to forget about it, when it now defines part of who I am.

I'm not even trying to look for the meaning of these thoughts and events. I'm so scared that it's back, even though I know it couldn't be. Sam's next MRI is October 25. The "space between" is almost over again.

I'm still secretly hoping for a Cubs wild card spot, at least for this week. My dad pointed out that there is still almost a month of Wasco baseball left. I'll try to hold on to the time.

Hey, Septemberfest is coming up this weekend at the school. We will have all of the Caps4Sam goods for sale, and Allen Maeder has organized a 50/50 raffle for the charity. Thanks Allen, Anne, and everyone else, including my wonderful parents, for all that you have done for our community.

Love, Patty

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August 10, 2005

If anyone is still out there, hello and thanks for checking in. All four of our kids have been gone to Florida for eight nights so far. They are coming home tomorrow. In some ways, the time has gone quickly. They're in the capable hands of my parents, who probably take better care of them than we do! Dan and I have been trying to get some projects done, but the lists are not complete, and they never will be. The dining room is now pink :), and the living room is almost a cream-yellow (it will be all that color when Dan is done). I have also been going in to my new work to try to get some things settled.

Days are all different for me now. I think I am slower, and I think about things way too hard. Always looking for meaning. In high school, I remember when my friend Mary asked me why I always had to try to figure out what everything meant. She was referring to songs and music, but I still see that in myself.

The neurologist who first visited Sam at Children's told us that it was fairly certain that Sam was developing classic epilepsy, and that was why he was having the seizures. He hadn't looked at the scan yet (I still can't figure that one out!!) because there was a problem with the transfer of films (technology) from Kishwaukee. He told us that with epilepsy, Sam just couldn't swim in murky water. Everything else, aside from taking medication, would be regular. We talked about this over lunch, how it was pretty good news, but it wasn't sitting right with me. Then they came in with the white coats after we returned to the room. It seemed things were not quite as they thought, and could we please come into this conference room. That's when all of the important guys sat around us at a huge table and showed us the tumor on the MRI (the same tumor that was on the scan that they hadn't seen). They'd have to talk to another important guy (turned out to be Dr. DiPatri, our hero), to see what he thought. Then the meeting was over, and they got up. I know I was shaky and freaked out. The intern sitting next to me left her chair out so I was stuck behind that table, and I just wanted to get out of that awful room. That was the heaviest chair ever. She had no idea.

Six months later, Sam is in Disney World. Life is moving along. Please keep Sam in your good thoughts next week when he returns to Children's. I feel good about all of this. I do worry about being so committed and out of the area all day, but I'm just going to let it go and see where my bus stops this time. Seizures or not, I still don't want my Sammy swimming in murky water.

Blessings to you all. You know, you can still sign the guest book!

Love, Patty


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July 11, 2005

Hello. It's hard to believe that it's the middle of the summer already. Tomorrow, Elliott will turn 14. When his birthday arrives, it always seems that school is just around the corner. School for everyone except Dan, this year. Sam's appointment with the epileptologist (scheduled in April) happened to fall on my first official day of my new work. That had me in a panic, as it is a bit challenging to schedule appointments at Children's. They found a place for us on August 17, so I won't have to take my first day off. I suspect that Dr. Laux will begin lowering Sam's seizure medication. The timing is curious. Actually, all timing is curious.

Gabriel and Sammy both had games tonight, at the same time. Even Lucas (Klatt, who is staying with us for the week) had a game. Elliott and Lucas were at Prather field, and I stood between the two fields at Hopkins so I could keep an eye on both little boys. It was hard for me, as I like (and need) to watch every second of every game. Gabriel hit the ball over the fence on a bounce, and Sam threw his usual steam (with a few scary balls just to keep the batters interested).

Whenever Sam is asked what he plans to be when he grows up, he smiles and responds, "an athlete." When Dr. DiPatri was taking that tumor out of Sammy's brain, he could have hit a nerve or vein or something. I think the chances were pretty good. Sam could have only had half of the use of his arm or something. Then what would he say? God, we're lucky. Right?

Love, Patty


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June 23, 2005

Today we had a booth for caps4sam at the farmer's market. We collected over $300 for the charity. Once again, I am amazed at the power of our community. One beautiful soul named Margaret had been trying to get a visor, and she found out through my mom that we would be downtown today. She had such passion and was so generous with her words and her donation. Again, God sends us these angels, in the form of earthly people. Thank you for caring, Margaret.

This is a little story that I have carried around inside for more than five months now. It has always been difficult to share. Maybe, because things are going well, I am ready to write about it. Tuesday had always been my favorite day. It started long before the Tuesday New Wave Nights at the Jungle. There was one bad Tuesday, though, between Sam's diagnosis and surgery, during that long week at home. We dropped the other kids off at school, got Sam's homework, and then went to the grocery store. It was cold outside, and Sam and I wanted to be indoors. I was fumbling with the groceries, and Sam was carrying his books and papers. Schoolwork was so hard; it was hard to concentrate, and everything was confusing. Why we were still trying, I have no idea. My sure-footed Sammy slipped on a spot of ice and fell hard to the floor. I'm not sure that he was really hurt, but the impact of everything came crashing down at that moment. Sam got up, tears flowing, and walked to the front of the house. I tried to unload the grocery bags to the porch. By the time my hands were free, I could no longer see Sam. My blood was ice, and everything was falling away. Where did he go? I got in the van and drove down the street. Sam was standing behind a tree. He had whipped his papers and books into the snow. I opened the window. We were both in tears. "Sammy, come home," I pleaded desperately. He stared at me for a while as I willed him into the car. Finally, he got in. At that moment, we decided together that we would no longer worry about school or homework. How could that possibly matter when there was a tumor in his head? That horrible space of time. I just remember standing right behind Sammy as he began to fall, and there was absolutely nothing I could do to help. I was his mother; I was supposed to protect him; I could not keep him from falling to the ground. Helpless we were, both of us.

I can remember that emptiness, but I can look back and feel like it was the eye of a storm that has passed. This week, I accepted a full-time teaching job for the fall. I think that must mean that I am looking ahead to, once again, my regular life.

Sam has another game tomorrow night. His team is not doing very well, and they could use some more fans. Thanks again everyone for your love and support.

Go Cubs.

Love, Patty

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June 12, 2005

Today is Sunday. I actually slept until 9:30 this morning (minus when I got up to help Sadie about 6:30). While all of the stuff was going on with Sam at the hospital, of course I questioned my faith. I always have, and I always will. That's just part of me, wanting to take things at face value but also wanting to dig deeper, and to find out why. The song, "God has Chosen Me" kept finding it's way into my head, and it made me think of Sam. I have not heard it sung in church until today. When Sammy first had his bandages removed, what I saw on his head was a crown of thorns. As the wound has healed and his hair has grown out, most people cannot notice the scar. Most people do not see Sam's crown of thorns. Most people may not see God everyday, but still He must be there. As we struggle with lots of changes and questions, I am trying to remember that what is important is right before me.

With lots of love and wishes for air conditioning,
Patty



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June 10, 2005

I have a tiny new lavender plant in my garden, next to the coneflowers by the lantern at the front steps. It was planted in honor of Brianna, the cherubic two-year-old daughter of my friend Aimee, who is part of the pediatric brain tumor online support group that has given me such strength over the last 4 1/2 months. Brianna, like Sam, has a ganglioglioma, but in a much more difficult place. The great news is that her tumor has been stable. Aimee's husband has had recent surgery due to a rare form of cancer. In the midst of her own very significant trials, Aimee has been an amazing support to others. I told Aimee that when springtime arrived, I would plant a new lavender (which means "devotion") just for Brianna. When the weather warmed, I did just that. To my astonishment, within a week there came from the plant one forceful and very emphatic flower stalk. Just one determined flower. I cut it tonight as it is in flower, and the smell is rich. It is strong, beautiful, and drying in my kitchen. To me, this is a story of courage and strength, represented best by none other than Brianna herself. Our friends and fellow community members continue to add to the funds for research and treatment of pediatric brain tumors by purchasing caps4sam. Thank you for your love and support.

Love, Patty

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May 27, 2005

People probably think I'm crazy for loving baseball so much. Friday, early evening, when I was counting the hours until Sam's first game, the sky opened up and it started to pour. I had a very dismal feeling that the game was going to be rained out. I had waited all winter for this game, and it looked as though I'd have to wait almost another week. That rain was all the tears that I had yet to cry, and all of the ones that I refused to let flow, for Sam and for all of the other, if less fortunate, souls out there with brain tumors. That rain and those tears were coming between what I most love to do, sit on the bleachers (not really, they make my butt hurt) and watch my boys play. The phone didn't ring, the game was not called, and the rain stopped. The earth didn't split apart, fireworks did not light up the sky, and actually, nobody said anything when Sam was out there on the field. He was just playing on his team like all of the other boys out there. He has a hard red helmet, but that's it. Hardly anyone even knows.

Last fall, when Wasco baseball was finishing for the year, Sam was on the mound for the last inning of the last game. It was in the 30's or 40's, absolutely freezing. Sammy had gone wild, and his arm was bothering him. His coach sent someone else out to finish the job. They lost every game, so that was no issue. It scared me, and it left me with a sick, uncertain feeling. Like something was not quite right.

After September Fest last year, during the middle of the night, Sam came in my room and said he felt sick. I thought I should be the one feeling sick, after riding on the Zipper (before the bolt fell out!) with Gabriel. We sat downstairs for a while, Sam had some pop, and we both ended up falling asleep on the couch until morning. He wasn't sick from the rides. He was sick because there was something weird in his head.

This is going on too long. I'm not sure why I feel compelled to write these things.

Sam's team tied in their game on Friday. It was an amazing game, almost a pitching duel (with about 10 pitchers) where each team scored only one run, tying the score at 1. We had to finish after eight innings, as dictated by league rules, because it was after 10pm. Sam hit a double on his first time at bat. He came to me at the fence and said, "Mom, that one was for Sue!" She had asked for exactly that. Thanks, Sue, Anne, Mom and Dad, and everyone else who puts up with me and wonders how Sam is doing. Right now, he's doing great.

Love, Patty

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May 26, 2005

We have our visors!! Mackenzie Maeder was the first to come up with the idea (her dad told me via e-mail!) and later that week Shelley (from Prairie View Dental, and an all-around cool person) also suggested it. There is just a small supply for now, and they are not in the stores. So, you have to call or come to visit if you'd like an exclusive ORANGE caps4sam visor. They're also $10. We also still have plenty of the original and baseball styles.

Sam is spending the night at Sam Matekaitis' house tonight (along with Nick Bourdages; I'm sure they'll get lots of restful sleep). He's been away from me on a few occasions in the last couple of weeks, and it might be okay. I still won't sleep too well, missing him.

As promised, here is the schedule for the Kishwaukee Hospital team. All games are at Hopkins Park, Hennigan Field.

May 27 8:00 pm
June 2 8:00 pm
June 6 5:45 pm
June 13 5:45 pm
June 16 8:00 pm
June 22 5:45 pm
June 24 8:00 pm
June 29 5:45 pm
July 7 8:00 pm
July 11 5:45 pm
July 18 8:00 pm

We would love to see you.

Love, Patty

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May 22, 2005

Hello out there. I can't believe school is almost out. Sam has his first baseball game this Friday night at the Mustang field at Hopkins, at 8pm. We would love to have some fans! Ironically, our team is sponsored by Kishwaukee Hospital. We're going to have caps at all of the games (I keep them in my car at all times). Thanks to the requests of two Mackenzies, we'll be offering orange caps4sam visors beginning very soon. Sam will be wearing #15 for his baseball shirt, as the #4 was way too small. As Sam pointed out, caps15sam is better than caps8sam.

I'll post the games schedule later this week. We would love to have you come out to support the Kishwaukee Hospitals.

Love, Sam's mom

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May 10, 2005

When Sam was diagnosed with his brain tumor, we had two weeks at home between hospitalizations. We were constant companions, and I thought the time would go by quickly. When I got ready to go to sleep on that first night home, a horrible feeling came to me. The last time I had been in that bed, the early morning of January 2, I was awakened by a haunting sound--the unforgettable noise of Sam's grand mal seizure. So I couldn't go to sleep. That next day, after shovelling the snow, I went to Target and bought a baby monitor. I hadn't given a thought to impact of space and time. I wondered how many seizures there had been that I hadn't heard. I wondered why Sam had the brain tumor. Incense? Cloth diapers? Bats? I still wonder about things. Also I wonder how you can get brain surgery and then, four months later, pitch a baseball like you had been playing every day through the winter. Tonight I feel like celebrating Sam, baseball, and everyone that has been with us during this time. I guess Sam is now an official brain tumor survivor. Jeremy Busch called tonight to invite him to be the batboy for NIU's last home game on Sunday. I think it starts at 1 o'clock. We'd love to have a gathering of caps4sam fans. Of course there will be hats. Please help us cheer on the Huskies.

Love, Patty

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May 1, 2005


In honor of Brain Tumor Awareness Week (May 1-7), Dan helped me create a new page for this website. I feel like there have been so many things inside my head, and maybe some of them are ready to come out.

We are so thankful for the latest news, that there is no evidence of any residual tumor, and that there is no new growth. We have six months until we have to return to Children's Memorial for another MRI. Dr. DiPatri is so great. Not just because he took the tumor out of Sam's head, but because he is just so real, and such a caring person. We would like to have him over for dinner. He would probably even jump on our trampoline.

I am very sad for the loss of the original guest book. I can't tell you all how much those words of support meant to me. Those of you who still visit and sign, please keep at it. It keeps me going some days. I'm all about wondering what everything means these days. Why did we lose all of those entries, all of those rich and genuine words? I have just recently (thanks to Emerald's mom!) figured out how to get emails from the guest book entries, and I had hoped to begin to make some contacts. Someone once told me that you just get your ticket, get on the bus, and go. It's not up to you. I guess that's just what this is all about.

Sam had his first baseball practice today. I don't think anyone would ever know by looking at him that he had a brain tumor out just three months ago. I always get a little depressed in the end of October, when the Cubs have played their last game and my radio is destined to sit for a lonely winter. Wasco baseball finishes about the same time. Sam played so hard for his Cardinals team last year, and they lost every game. We made it through the winter (just barely) thanks to the love and support of our community.

Thank you for your continued support of caps4sam. There are so many more children who have not been so fortunate as Sam, and whose tumors are much more invasive and higher-grade. Sam is just a regular kid, and so are all the others who are being beaten by something far from their control. We expect more baseball caps on Tuesday. For Brain Tumor Awareness Week, we plan to offer an autographed cap to the highest bidder. Please watch the site for details. And please continue to visit.

Love, Patty