June 2001 Updates on
Mary Beth's
Journey
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Today was the last day of school for Heidi and we all celebrated by attending Children's Hospital Night at Six Flags. We have been attending this special event for several years and enjoy supporting this fundraiser for Children's Hospital. This evening $440,000 was raised to benefit the hospital. The evening includes all the rides, food and beverage one can consume while the theme park is closed to the public for this private gathering. This was one of Mary Beth's favorite outings because of her love for roller coasters. She would take anyone on them so many times that her fellow riders would get queasy. At least, I did and MB laughed every time I turned green. Tonight, her sisters and brother followed her lead by spending the majority of their evening riding the coasters. The great thing was that they did so with their friends and didn't ask me to ride once. I still have my dinner with me and am going to bed feeling great but I sure do miss those times spent twisting and turning my body on the rails with MB laughing hard at me.
God bless you, We had a great time today spending time with friends in two celebrations. This afternoon we attended Kelly Roth's graduation party. Kelly graduated from St Joe and was Mary Beth's big sister. She is off to the University of Missouri this fall. We are still trying to convince her that there are two really good schools just a few hours farther west, but we know she will have a great time at Mizzou! It was great to see her and her sister Emily along with her parents and other friends and relatives having fun. This evening was Pillarfest, the annual parish festival at Our Lady of the Pillar. We all had a really good time and Will danced until he fell asleep with his head on Sheila's shoulder while the DJ's music was blaring. Although the weather has been very cool, we are truly kicking of summer with some outdoor fun.
God bless you, We provided our angel Mary Beth with some humor this afternoon. Will and I picked Barbie up from spending the night at a friend's house and went to the hardware store. A trip to the hardware store with Mary Beth always meant that we would end up in Chaminade High School's parking lot with MB behind the wheel. Today it was Barbie's turn behind the wheel of the Xterra. After testing the support of all of our seatbelts the first time she applied the brakes, she started catching on. When we were finished, Barbie made the exact same comment that Mary Beth made the first time she drove with me, "It is a lot harder than it looks!" The best humor of the day came when Barbie was backing into a parking space. I told her to "crank it", meaning to turn the steering wheel sharply. She interpreted this as "floor it" and squealed the tires going backwards. All three of us laughed as we talked about how funny MB would have thought it was. Please say some extra prayers for our dear friend Rachel Baumgartner as she enters the BMT unit at Children's Hospital today to start her stem cell transplant. We know how difficult the next few weeks will be for her and her family and know they will appreciate all the support you can provide.
God bless you, As mentioned yesterday, Rachel is now in the BMT unit at Children's. She just graduated last week from St Joseph's Academy and will be confined to her room for the next several weeks. Presented below is an email message from her. Dear Everyone, I am now at Children’s Hospital for the next 4-6 weeks. I am having my stem cell transplant. My transplant date is June 13th. I really would love any email, mail, etc. Visitors are VERY limited, so please call or write me about that. PLEASE FORWARD THIS TO ANYONE I KNOW OR YOU THINK WILL WANT IT!! Thank you sooo
much! Love, rachel~ “Be who you are and say what you feel, cause those who mind don’t matter, and those who matter don’t mind.” -Dr. Seuss
God bless you, As we were driving from Fort Myers airport to Naples, FL yesterday, it was raining. When the shower passed and the sun again appeared, William was the first to spot a beautiful rainbow. We all admired it and Will said, "Mary Beth isn't here, but she sent us a pretty gift". Later in the evening, as we were dining in an open air restaurant, the sun was beginning to set and it refracted shades of pink and purple on the clouds that were prevalent in our sight. Will again explained that the pretty cloud colors were another gift that Mary Beth had given us. We all looked at the same clouds and the rainbow and did not realize what special gifts they truly were. Sometimes to really see things, you need to look through the eyes of a child. We are very thankful for this gift as well!
God bless you, Today was a day of fun in the sun and on the beach. Barbie, Heidi, and Sheila had fun on their boogie boards while Will was in his purple inner tube floating in the water. We took long walks on the beach and simply let our minds get away from it all. Will and I took on the adventure of hunting for a sea turtle so he could bring it home. We have not located one yet, but we did find numerous sea shells. William calls his favorite shells "angel wings" because, amazingly, they are shaped like an angel's wing. We found a lot of these and he wants to make an angel out of them when we get home. He shared his theory as to how so many of them landed on the beach. As he explained it to me, Mary Beth swooped down from heaven and, while her angel friends were holding onto her feet holding her upside down, she dropped the shells all over the beach so he could find them. This makes perfectly good sense to me . . . what do you think?
God bless you, This morning our friend Gibson Lamkin was scheduled for neuro-surgery at Children's Hospital as performed Dr. Park. We have been praying for Gibson, who just completed her fifth grade year at MICDS. Since we are out of town, we do not have current information on her status and ask each of you to pray for her recovery and for Walter, Linda, Killian, Katie and Russell as they support their daughter and sister. She is in the finest care with Dr. Park who is know around the world for his expertise. After ICU, she will be in the hands of the one of the best nursing staffs in the country on 12 West. Mary Beth had these experiences and she loved Dr. Park and the entire 12 West staff. We know that Gibson will recovery fully and do so with a smile. Please help her in this effort by asking MB to look over her.
PS - We just received word from Walter that Gibson's surgery was successful. Please continue your prayers of thanksgiving and continued recovery.
God bless you, We know that only one being is perfect, but we all referred to the day as perfect. In our human perspective, we considered the day today good enough to classify it in these terms. We slept in until we woke up without assistance (7:19 AM for Will). We ate breakfast overlooking the Gulf of Mexico in our PJs. The beach welcomed us with a beautiful day of sun and cool breeze, despite the high of 87 and humidity of 98. Lunch was enjoyed outdoors as we watched the tide splash against the beach. Dinner was on Marco Island with the pelicans attempting to share in our fare. The setting sun was enjoyed from our 10th floor vantage point as we discussed the memories we have created this week. Need I say more?
God bless you, Family traditions usually come to be around special events like holidays or vacations. Some of the examples for us are our annual Easter egg hunt, attending major league baseball games, the special things we do every Christmas. It seems that William had started his own version of a tradition as well. He has elected to fall asleep and snore loudly while attending masses at parishes we visit. He showed his traditional slumber this evening again at none other than Saint William Catholic Church here in Naples. All the people around us loved to see him sleeping on Sheila's shoulder. When Father Stearns called for all young children to come to the alter for a blessing, I approached the alter with him sound asleep and as Father laid his hands on Will he smiled and said, "Wouldn't it be great to be so peaceful." Rest assured, this did not last all evening. Just after mass, he was running around Joe's Crab Shack dancing in the open spaces between the tables.
God bless you, We heard this evening from Walter Lamkin and he expressed his sentiment on behalf of the Lamkin family. They are very appreciative of all of your prayers for Gibson and their entire family. They know, like us, that all prayers and positive thoughts help in some way - sometimes in ways we don't always recognize at first. They are elated with the success of Gibson's surgery, but know that some difficult days are likely ahead. Please keep up your prayers for Gibson and for Rachel Baumgartner. At the time of this writing, we do not have a current update on Rachel. Our experience tells us though that she is in a very intense stage in her transplant process. She is in need of your prayers as she endures the high doses of chemotherapy leading to her stem cell transplant on Wednesday. Thank you for remembering these wonderful young ladies in your prayers.
God bless you, Tonight I had the opportunity to watch paint dry as we attended the first swim meet of the year. At least, that is what it used to feel like when attending the first meets when we did not know that many kids on the team. Your interest level certainly wanes when your child is not in the pool. Barbie and Heidi both performed admirably, especially since they have not been to many practices. Out side of watching them swim, you can probably imagine who else provided entertainment. William found a new friend Morgan and the two of them attempted to catch fire flies after it turned dark. They had some success albeit limited. He came running up to me and said in an overly-excited voice, "Dad, I have an idea! I need a flash light." After an inquiry as to why, he continued, "I want to tape it to my back and turn it on. Then I will dance around flapping my arms and the lightning bugs will think I am their mommy. Since it's dark, they will want to be with their mommy and when they get close to me, I'll grab them." Disappointingly, I did not have a flash light, but I know what essentials to pack for the next meet.
God bless you, Mission accomplished! William is the proud owner of a new pet turtle thanks to our friends Patty Miller and Bill Fleming. He was so excited that he phoned to inform me of this fact this morning. He has named him Snowball, but has given him the nickname of Bozo. All the neighborhood kids have been invited over to see him. The only books he wanted to read this evening were the book on caring for turtles from Mikey Miller and his favorite bedtime story book from Elizabeth Gelpi which includes a story about a boy and his pet turtle. He is one happy camper and the proudest pet owner we know.
God bless you, Turtle update - It has been 24 hours since Snowball (alias Bozo) has come to live with us and he has only peed on the oriental rug once! All the neighbors who walk by are escorted in by Will to view his prize possession. We just received our family portraits today that we had taken in Wichita shortly after Christmas. When Sheila showed them to me this evening, we both broke into tears as we saw Mary Beth smiling from ear to ear. It is moments like this when the harsh reality of life cuts deep into our souls and we realize that we can no longer enjoy her smile here on earth. We also know that all good things are worth waiting for and we will enjoy her beautiful smile again when we are reunited.
God bless you, After Sheila read yesterday's posting, she shared with me what happened earlier in the day. The portrait package was delivered when she, Heidi and Will were home. Barbie was enjoying the 105 heat index at field hockey camp. They opened the package and Sheila and Heidi cried for about fifteen minutes straight. William saw their sadness and kept moving from one to the other providing his hugs and kisses and telling them it was going to be okay. I received an email this morning from our dear friend Sara Clark, the OLP youth minister. She suggested that some day when I was running short on thoughts and words, perhaps I could mention the breast cancer web site. Well, I am not out of words or thoughts but felt it important to use this time to elaborate. Even before Mary Beth was diagnosed, she would go to this site every time she logged into the internet and click on this site and the related sites. With additional clicks, these sites have sponsors who contribute to the underprivileged. Mammograms are provided to women, food is donated to the hungry, care and counseling is provided to reduce HIV in children, vitamin A is provided to children, etc. There is no obligation to purchase anything, although if you venture into the linked sites, you may purchase items resulting in additional donations. Please take a moment to explore these sites. You may start with www.thebreastcancersite.com and explore from there. Since Mary Beth no longer has the ability to click away, we can all fill this void.
God bless you,
Greetings from Milwaukee. This weekend marks the Pillar Meets Miller road trip that Sheila and I donated to the auction. So far, we have had a good time attending a fish fry and a bonfire in the backyard at the home of our friends, Dave and Jean Lauer. Ralph Rockamann surprised all of us with t-shirts and polo shirts sporting the weekend theme. The polo shirts have the angel that Mary Beth designed so she will be with us in spirit as we do one of her favorite things on Saturday by attending a baseball game at Miller Park.
God bless you,
What a beautiful day! We spent a couple of hours on the water on pontoon boats on Pewaukee Lake, tailgated for 3 hours at the new Miller Park and attended a baseball game. Who could ask for more? More was delivered as our beloved Royals kept their winning streak alive by defeating the Brewers to win their fifth straight. The first three were against our Cardinals then they won the first game of a double header this afternoon. We believe that they have turned the corner and are coming to life in the American League Central. Time will tell.
The highlight of this evening was the sausage race in which four 8 foot tall sausages race from third to home. Our only regret was that Uncle Ralph was not in one of these suits. Maybe next year.
God bless you,
Upon our return from Brat Town, Sheila and I got to spend time with Barbie, Heidi and Will today. No matter how young or old you are, please say "I love you!" to your Dad and/or your children today, no matter where they are. And although it isn't her special day today, please always remember Mom. If you did not have the opportunity today, say it any and every day. There is truly no better gift.
God bless you,
One of the best gifts I have ever received was presented to me by William yesterday for Father's Day. Over the weekend, while we were out of town, he handmade a purple candle in the shape of an angel. When he gave it to me, he called it my Mary Beth candle. It was a special gift since this was our first Father's Day without her here.
Tonight, the girls swim team won another swim meet. It went much faster than last week and they all did well. We took Matt Baumgartner with us and he and I hung out with Will. His sister Rachel is doing well. She was all smiles today when Sheila and Barbie got to see her while they were all at Children's Hospital for a visit. Younger children are not allowed into the unit, so Heidi had Will down the hall. They were disappointed that they didn't get a chance to wave at Rachel through the glass but were excited to spend time with Matt.
God bless you,
At the swim meet last night, since Heidi was not wearing her swim cap, it was very noticeable that she was growing her hair out for the purpose of donating it to Locks of Love. We have heard through the grapevine that several other people are doing this as well or have already donated as a tribute to Mary Beth. Locks of Love is the organization that creates wigs for cancer patients from donated real hair. They are based in Palm Springs, FL and accept hair in the length of 10 inches. Their web site is www.locksoflove.org. Mary Beth donated her hair shortly after her surgeries because she knew someone else had better use for it that she did.
We would love to hear from you if you are participating in this informal tribute to MB. If you are a participant, please email any of us to let us know.
God bless you,
Tonight is the first time Will has worn his glasses since last Friday evening. His "shiner" is almost gone as well. The evening Sheila and I left for Milwaukee, he went with Barbie as she was hired to baby-sit for the Mannion children. Will loves to play with George and is most often invited to do so by his mom Meg. Apparently, the accident occurred when it was time for him to go home with Heidi and Molly Rockamann. He was running in the kitchen and ran right into the countertop with his glasses.
His glasses cut his cheek and caused everyone concern at the sight of blood, especially him. They determined that it was a minor cut and he settled down. As soon as he regained his composure, he simply stated to Barbie, "Mrs. Mannion should remodel her kitchen so this doesn't happen again".
God bless you,
It is truly amazing to us that we continue to be surrounded by so much love from so many people. Every day, we receive at least one, if not several, phone calls, cards, or emails from friends simply inquiring as to how we are doing. As an adult I captured the phrase "Every day's a holiday" as a way to approach each day. When I wake up in the morning, I say this to myself and I strive to not allow the day's events to prove my assessment incorrect. By the prayers and actions of so many of you, these days truly are holidays. Thank you.
God bless you,
Greetings from Osage Beach, Missouri and the Lake of the Ozarks. We spent the afternoon playing in the water, attempting to fish and having fun with the Nusrala family. Joe, Shelby, Ashley and Alexa invited us down to enjoy the lake life for the weekend in their newly remodeled home. When Will was fishing off the dock, it reminded us of an incident in which we were all fishing off the dock at Innsbrook. Mary Beth was a little too close to the edge when she fell in, wearing her overalls. She stood up, water drenched and laughing, then fell backwards intentionally to have more fun. We intend to enjoy ourselves this weekend just like she always did.
God bless you,
It is hard to believe that it has been five months since we last heard Mary Beth's voice. We each face each day with the knowledge that it is a gift and we miss her everyday. I am sure we always will. With each passing day, we continue to experience more ups than downs. We know that Mary Beth plays a large part in this process because of how she prepared us and continues to look over us. She wanted us to carry on with a smile on our face and with laughter in the air. This, combined with the love, support, and prayers that we continue to feel from so many, makes it all possible.
God bless you,
Well, we are ready to face another week of summer fun. Tomorrow marks the start of Vacation Bible School at Our Lady of the Pillar. Will is very excited to attend and Heidi and Sheila are anxious to help out as well. Barbie opted to take the week off from a daily commitment since the past two weeks found her attending field hockey camp and soccer camp daily.
Will, Joe and I came up short in the fishing department over the weekend, but we all had a great time playing on and in the water. He was also looking to add to his turtle collection (of one) by finding an Ozark turtle. He wants to again take up this task over the upcoming 4th of July weekend. The weather over the weekend was spectacular. Thanks, Mary Beth!
God bless you,
It is time to call on all to say some extra prayers each day and "storm heaven" for the complete healing and recovery of our friend Rachel Baumgartner. As you are aware, Rachel has been in isolation in the BMT unit at Children's Hospital since three weeks ago yesterday. Today she was moved into the intensive care unit so she could be more closely monitored with an infection that she contracted. Warding off anything like this is difficult because of her stem cell rescue. Please keep her in your thoughts and prayers and let her know that you are praying extra hard.
Show her that she has people she doesn't even know who are praying for her. Spread the word to all of your friends. In your prayers, feel free to call on our angel Mary Beth and remind her of how she told us that she would take care of her friend Rachel.
God bless you,
When I returned home this evening from Minneapolis, a neighborhood gathering broke out in our backyard as seems to often happen. In the dark of the cool evening, Will and his buddies gathered lightning bugs while the adults enjoyed beverages and solved the problems of the world. I found part of the evening peculiar in that we were fighting off the Minnesota state bird all evening (mosquito) and it was much cooler here than it was there! Go figure.
God bless you,
Every night, since Mary Beth entered our lives on December 7, 1985, Sheila and I have read stories to the girls and Will before saying our night time prayers. Lately, Will has specifically requested that Sheila read to him, exclusively. Occasionally, he will throw me a bone and let me read at least one story to him. His affection for his mother reading to him reminded me of the following poem by Strickland Gillilan who lived from the mid 1800's until the 1950's.
Richer than Gold You may have tangible wealth untold; Caskets of jewels and coffers of gold. Richer than I you can never be -- I had a mother who read to me.
God bless you,
Tomorrow marks the last day of Vacation Bible School at Our lady of the Pillar. The theme has been focused on the "Polar Express" and how Jesus impacts our lives. To learn about how Jesus is present in our daily lives, all you need to do is sit down with Will and ask him about the events of the week. He will be quick to fill you in on the fact that Jesus is "cool" and he really "rocks"!
God bless you,
Greetings from my hometown of Garden Plain, Kansas. I am here to renew old friendships with the class of 1976 at my 25th reunion from high school. Unlike St. Louis, no one here asks where you went to high school because the options are limited to one. I am sure we will have some yearbooks to look at. On my flight I thought about a conversation I had with Mary Beth about 3 years ago. She was looking at high school years books of Sheila and me and thought the attire, hairstyles, glasses, etc. were so "70's" and really dorky. I agreed and she went on to state that she could not imagine looking at her yearbooks as a 40 year old and thinking that the style was so "90's" or "early 2000's". She said that the styles of today were timeless. Only the passage of time will tell.
God bless you,
It is an absolutely spectacular day in south central Kansas. This morning in our golf tournament I only sent one ball swimming. I did not remember to pack a key element of my golf accessories - my ball retriever. Barbie selected this item as a gift for me for Father's Day last year. She said she thought I would put it to good use since she frequently witnessed several splash landings!
God bless you,
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