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April 14, 2005 April 19, 2005 April 20, 2005 April 22, 2005 April 22, 2005 April 23, 2005 April 25, 2005 April 26, 2005 I told him that nobody knows why we get them, but everyone knows that the
only people that do are incredibly brave and strong. I told him his job was to
be just that and people will come from all over just to see how amazing he is.
He shook his head for me & said he could do that. Pray for us! April 28, 2005 April 29, 2005 May 02, 2005 May 05, 2005 May 10, 2005 May 11, 2005 May15, 2005 Everything went well at radiation on
Friday. We stayed in a hotel room on Friday night as a "night out" with the
kids. Joey and his sister got to swim and we all had a great evening together.
We went to eat breakfast in the morning and the hotel employee behind the desk
handed Cindy a copy of the Courier newspaper asking if the picture on the front
page was of our children. Cindy looked at the paper and
sure enough, there was a half page full color photo of Joey and Tayler with his
story. The weather was nice for the rest of the day, so Joey spent much of his
time outside riding his bike & playing. Sunday was cousin Adia's 5th b-day party
where Joey got to go to the petting zoo. May 19, 2005 Mostly a
routine week for Joey. Radiation treatments have been going very well. Only a
few episodes with the mask pinching his face this week, but he takes it like a
champ and sits through it without too much fuss. Everyone is looking forward to
Sunday's wine tasting benefit at the Anvil Club. Thank you to everyone who has
come forward to help get that organized. We had another local newspaper run an
article on Joey today that was just beautiful. Here are the links to what's been
published so far:
May 23, 2005 What a wonderful weekend!! Sunday's wine tasting event at the Anvil Club attracted almost 120 people The weather was beautiful, allowing us to have the party out on the open air veranda. It was nice to see so many friends, family, co-workers and even several people who just read about the event in the paper and come out to enjoy the day with us. Our most sincere thank you to all of the people who organized this event for us, especially Leah, Chuck, the Anvil Club employees who all generously donated their time AND tips and all of the local businesses that donated items for the raffles. We sincerely appreciate your support.
May 27, 2005 More good progress this week. Joey is showing less and less of the symptoms that were so prominent in the beginning. He still tires fairly easily, but the physical limitations he had been experiencing with the weakness on the left side of his body are appearing to diminish. With only 2 more weeks left of radiation, we are anxious to resume as normal of a summer as possible without having to go to the hospital every day. We had our family picture taken at church this week and spent the day at Wrigley Field yesterday. The Cubbies lost to the Rockies, but we had a great time and the weather was beautiful. Thank you to Roger for making that happen for us. I hope everyone has a safe and relaxing holiday!!
May 31, 2005
June 10, 2005 June 06, 2005 THIS IS THE LAST WEEK OF RADIATION!!! Joey (& mom & grandma too) are quite excited about not having to trek the 60 mile round trip every day after this week. Joey is in good spirits still, though he is showing some difficulty with his walking again from time to time. We can't be sure if this may be due to the decrease in dosage of his steroids or if it being caused by the tumor itself. On Saturday, Joey and I were invited to the Indy car races up in Milwaukee with my friend Joe. We sat right next to the track across from the pit area & we had a great time. We're all anticipating the Ride for Joey and Joey Jam this Sunday. We can't say enough about all the people who have been organizing and planning the event. We hope that you are able to attend on Sunday and look forward to seeing you all there. June 13, 2005 Days like Sunday are beyond words. Mom, Joey, Tayler and I woke up early on Sunday morning to get ready for the Joey Jam and the Ride for Joey. I arrived what I considered to be early to find the bar swarming with the organizers of the event already setting up the party. The motorcycle and sidecar that were being loaned to us for the day were parked right out in front for everyone to see. Plenty of volunteers were present to help get everything ready. The festivities started at 9:00 when the first bikes started rumbling in to register for the ride. After a nice introduction from Laura O, everyone cheered for Joey as he shyly hid behind me. Immediately following, our friend Ken fired up the Karaoke machine and started off the entertainment. At about 10:30, the motorcycle ride kicked off with Tayler and Joey in the sidecar and myself and Cindy on the motorcycle leading the pack. We were given a police escort through town as people lined the sidewalks of the bridge to cheer on Joey and the riders as we left. Nearly 100 motorcycles roared through the downtown area en route to our first stop, The Outpost. As the bikes pulled in, there were already brats and burgers being cooked up on the grill and a handful of thirsty bikers already present to help us celebrate. After about 30 minutes we departed for the second stop, Mott’s in Burlington. We arrived roughly 2 minutes before the bar opened and it was great to see all of the bikers arrive and line the streets of a town even smaller than Dundee. We rolled back into downtown Dundee at about 1:00, where we were greeted by the other guests who had since arrived. Once we re-staged the motorcycles, we headed back to the bar where the entire street was blocked off to allow the crowd to enjoy the weather or sit in the air conditioned bar for a break from the heat. The fund raisers were an amazing success and the dunk tank seemed to be a real crowd pleaser. Even Joey himself insisted that he get a chance to be “dunked”. I stood in the tank and assisted the smaller children who wanted to have a turn. Universal Slim and the Blues Kangaroos put on an awesome show for us and kept the tunes rockin’ throughout the afternoon. Spa Bleu generated an enormous amount of money by donating the proceeds from haircuts, manicures and massages for the entire day. I hope everyone got a chance to see the spa, as is really is a great addition to the downtown business community. Back at the event, there were cotton candy and sno-cones for everyone, a table where the kids could design their own custom bandanas, a beer truck, great food and even greater people in attendance. Two members of the EAST Dundee Police Department were on hand to join us for the bike ride and presented us with a check for Joey’s medical fund on behalf of the whole department. The Lions club was also in attendance and presented us with a generous donation for Joey’s medical fund. We cannot say enough about the friends and family members to made this day such and incredible experience for us all. I’m hoping to get a photo page put together in the near future.
To Leighton, Laura, Kris, Lynea, Stan, Kathy, BC, Sally and Rich and everyone else who put in countless hours of preparation, planning and money, simple thank you’s will never be enough. You are an amazing group of friends and we love you all dearly. You have forever made a difference in our lives, not to mention the joy you brought to Joey.
To the business owners and individuals who generously donated raffle items, friends and family who helped run the event and everyone who attended, we are forever grateful. I hope that the smile on Joey’s face as he enjoyed his big day was enough reward for the time you spent working in the high temperatures. We thank you for your support June 17, 2005 Our first week with no medication has been good. Some of the symptoms have begun to return, such as the decreased motor function on the left side. He is still walking on his own but often wants to be carried if we are going too long of a distance. If someone could please start organizing a fund raiser to buy me a new back too, I'd appreciate it. The symptoms may be a result of swelling caused by the decreased dosage of steroids rather than the tumor causing them. Not having to go to radiation was nice and the only medication he is on right now is the steroid. He will start a higher dosage of Chemo in the 1st week of July. He will take it for one week and then skip the next three weeks and continue that cycle until this evil is gone. We spoke to Dan, our Wish Granter from the Make-A-Wish Foundation today and Joey has chosen to go to Disneyworld. Because he starts the higher dosage of chemo in July, his doctors say he should be going as soon as possible and Make-A-Wish already has things planned for us. They've all been great. Joey will have another MRI on Monday and we should see how things are looking. Keep the prayers coming..
June 23, 2005
July 05, 2005 Castle of Dreams: As if the village area weren’t enough to keep us entertained, we
also got park hopper passes to the Magic Kingdom, Universal Studios,
MGM, Sea World, Animal Kingdom and Epcot, which allowed us in and out
privileges for the entire week. Along with the tickets, we were given a
guest assistance card that gave us “front of the line” privileges to
all the attractions the parks had to offer. Not having to wait in the
lines was probably one of the greatest parts, as it allowed us to see
more than is usually possible in one day. We were able to get pictures
with all of Joey’s favorite superheroes at Universal, and Spiderman
himself jumped up ONTO Joey’s wheelchair and posed for a free
autographed 8x10 photo, compliments of the park. The look on Joey’s
face was priceless.
June 25, 2005 The event at Floyd's on Thursday night was awesome. Friends, family and aspiring musicians from all over came out to enjoy a night of music, raffles and fun. We can't say enough about the people who organized this, especially Meredith and Patti. Almost $4000 was raised in less than 4 hours between the collective efforts of everyone there. Thank you again to everyone involved. Joey spent a steamy day at the zoo yesterday followed up with a swim at the pool. It comes at no surprise to me that what he remembers most about the zoo are the primates. There was evidence on the enclosure window that one of the chimps had flung something at it recently, and if you've seen the new cartoon "Madagascar", you may find that as funny as Joey does. July12, 2005 Joey is a traveling little guy lately. He left for St Louis to visit family two days after he got home from Disney. He came home for a day and headed down to Sanibel Island for a week of fun on the beach. He started the heavier dosage of Chemo on Sat night and although he did become ill during the night, we think that it may have been due to a late dinner that evening. He has been waking up a bit nauseous though the "sickies" are gone. I have created a slideshow of his Make-A-Wish trip here. It only woks in Internet Explorer for some reason, but the pictures are precious. July 22, 2005 Joey is back at home now after 3 weeks of traveling. He is doing pretty well as far as the chemo goes, though he still gets tired fairly easily. He stays active as long as he has the energy, whether it be swimming or riding his bike. We had planned for him to go to Colorado next month with Grandma and Grandpa, but his doctors expressed some concern about the elevation and thinner air making it a bit difficult for his body to handle. Keep the prayers coming and we thank you all again for your support. August 07, 2005 Since Joey has been on the higher dose of chemo, the only side effect we've seen to date has been how quickly he tires. As much as I want to keep things upbeat and happy all the time, I also want to let you know some of the downsides too. This is his "on" week of his 3 week off, one week on for chemo. Since the near complete weaning of the steroid (he's almost off it), the chemo is not agreeing with his stomach as well as it used to. Last night, he had his mother up with him until 4:00 am because he was so ill. He was vomiting every 15 minutes and getting progressively weaker with each trip. Mom had to wake me out of exhaustion to relieve her from holding him up in the bathroom. He slept most of the day with the exception of a trip to have dinner with cousin Brandy at Grandma's house. Please keep praying for Joey. The hardest part for me is when I can see that he is in discomfort and there is nothing that I can do. August 14th, 2005 The rest of the week was slightly better than the first night of the chemo cycle. He no longer got ill from the pills though he seems to be getting progressively weaker. He is still walking on his own, but even with handheld assistance it's difficult for him. He doesn't complain at all and no matter how tired he is, he still insists that I take him to the comic book store downtown Dundee to get the new issues of his newfound hobby each week. Everybody there is so patient with him and I can't thank them enough for that, not to mention the gift certificate they gave him at the Joey Jam. We spent the day yesterday at a surprise b-day party for Mommy hosted by some good friends of ours. Plenty of friends and family came by to help celebrate and Joey lasted through the whole party and even did the stairs a few times by himself which doesn't happen too often due to his weak side. He's off chemo now for 3 weeks and will continue on that cycle. August 19,2005 This week was slightly better than last in regard to his weakening and his spirits are as good as ever. He went to St. Louis with Mom for a few days and spent time with family there, as they wanted to get one last trip in before school starts next week. Joey is starting first grade this year and he is planning on going full days. He is looking forward to seeing all of his old classmates, friends and faculty. Please have a look at the events page for the golf outing and the carwash planned for the end of August. September 4, 2005 Last weekend was a busy one for Joey. We had a golf outing benefit hosted by River Lee's of Dundee held at the Bonnie Dundee Golf Course, followed by a steak dinner at the bar. A great time was had by all and there was a lot of money raised for Joey's medical fund as well. Also on Saturday was a car wash for Joey at 1GR8 Car Wash in West Dundee. We thank everyone involved and really appreciate what you've done for us. Joey turned 7 on August 30th and enjoyed all of the kind greetings left for him on his web page. We checked periodically throughout the day and there were always new messages for him to read. Thank you all for making it a special day for all of us.
September 15, 2005 Joey came home from school on Aug 31st complaining of dizziness. We called his doctor and were told to take him to the emergency room just to be safe. We were scheduled for an MRI on Sep 2nd, but the local emergency room did a CAT scan, the results of which sent us on our way to Lutheran General for some more testing. An MRI was done on Wednesday night and although the dizziness passed, they wanted to keep him in overnight for observation. Grandma came out and played games with Joey while I got things in order back home. I came back out and spent the night with Mom & Joey while we waited for results. The next day we were told that the tumor has been growing rapidly. We have decided to stop his current treatment regiment, as the tumor is not responding to chemotherapy. We needed to get a second opinion for our peace of mind, so thanks to a great friend, we were squeezed into a booked schedule at Children's Memorial the next day to meet with a well respected brain tumor specialist. They examined the MRI, checked him from head to toe and presented us with 3 clinical trials that Joey would be eligible for. We are still looking into the trials and have not yet decided if any are in his best interest. His doctors increased his steroid dosage to help him with motor skills. He will be getting therapies in the house and we will have medical visits to the house several times a week as well. Joey is still very much himself. We went to the zoo with his cousins from Minnesota and had a great time. One of the chimpanzees came up to the windows and banged his fists against the glass right in front of all the kids twice!! We went to Grandma's house for dinner and then came home exhausted from the day in the sun. We woke up on Labor Day Monday to HUNDREDS of red and blue balloons in our front yard. Some of the balloons even had dollar bills tied to the strings, which Joey thoroughly enjoyed. Thank you to everyone who woke up early ON A HOLIDAY to set that up. If you happen to see Joey, please greet him with a smile rather than tears. He is happy, very ambitious and still faces each new challenge with amazing bravery and determination. For the sake of keeping Joey's will strong, we have opted to not discuss in detail the findings of the MRI. We encourage him with only positive thoughts and hope that everyone can extend him the same courtesy. Our journey is not yet over and miracles DO happen, though only when they're supposed to. October 6, 2005 Back from the Magic Kingdom once again and it was wonderful. We stayed at the Saratoga Springs Spa & Resort on Disney property and had a beautiful view of Downtown Disney right from our balcony. Our first day was probably the most anticipated by everyone as we headed to Discovery Cove to swim with the dolphins. While we waited for our turn with the dolphins, we headed over to the stingray tank where we waded through waist deep water and were able to pet the stingrays as they "flew" by in the water. It was a bit scary at first, but once Joey and Tayler realized the the rays would not hurt them (the stingers are removed), it was exciting for them to e right in the middle of the action. When it came to be our turn, we headed to the dolphin tank where we sat through a 10-minute orientation before we went to meet our new friend Thelma. Once in the water, we each got a chance to touch her as she swam by and gave her different hand signals to cue her to do different "tricks". One by one, we were each invited to put our hands under her chin and give her a kiss on the nose!! After that, we took turns holding on the her dorsal fin and one of her flippers as she took us for about a 50 ft ride through the water. Since the pace that she normally swims at may have been a bit fast for Joey, the trainers called one of Thelma's calves over to swim in front of her during Joey's ride to slow her down a bit. The smile on Joey's face as he was riding on a dolphin's back was priceless. The rest of the week we visited Animal Kingdom, Epcot, Magic Kingdom and MGM. Although we were limited to the types of rides that we could go on, we still had a great time seeing all of the things that we missed on the last trip. We revisited the Give Kids the World Village where we stayed the last time and Joey got to show Grandma where his star was placed on the ceiling. Joey's Aunt Sherry drove up from Miami with her boyfriend to spend a day swimming at the resort with us and shopping at Downtown Disney during the evening. We want to sincerely thank the family that made this possible for us by paying for the stay at the Saratoga. We cannot begin to explain what a difference it has made in the quality of time that we are able to spend with Joey. We continue to be humbled by the generosity and caring that is still being shown toward us. Dr Cook and Dr. Brown, you are God-sent through our eyes and we are forever grateful to you for your gift. September 21, 2005 Quite a bit going on over the next week. Joey has been getting prepared to receive his first communion this Sunday at St. Catherine's. Grandma Nancy and Aunt Liz were nice enough to come give Joey lessons several times a week to help him get ready for this. We are going to be going back to Disneyworld very soon thank you to a very generous family that was able to get us a week at a resort on Disney property. Grandma is turning 17 again next weekend and we are going to bring her with . He won't be able to do many of the rides that we went on last time, but it will give him a chance to do some of the things we missed. We also have reservations to go swimming with dolphins!! We had wanted to do this last time and were not able to get a reservation during that much busier time of year. I think we're all looking forward to a week back in such a magical place. October 15, 2005 This has been a challenging week for us. Joey is getting more and more tired and needs assistance with almost everything. Nighttime is especially difficult with bathroom breaks, as standing on his own is difficult. He still has his appetite and is occasionally interested in going for quick outings. He prefers to spend most of his time surfing the internet in the living room. Dundee Highlands School holds an annual "Fun Run" in which the entire school does a lap around a preset course through the neighborhood. Prior to the run, the school holds a t-shirt design contest which Joey won! Every student in the school got a t-shirt and one is displayed in a beautiful frame on the wall with his picture next to the previous winners over the past 10 years. Before this years run started last Friday, he was introduced as the design winner and was greeted by several of the classes chanting Jo-ey ...Jo-ey...Jo-ey!! It was a beautiful day outside and Joey had a great time hanging out with his school buddies, teachers and friends. Aunt Bonnie and Uncle Keith are coming up for the weekend from St. Louis and Joey is excited to see them again. Please come join us this Saturday at Santa's Village for the North Pole Jam featuring six local bands, food, drinks & more!! First band starts at 2:00 in the afternoon and the fun will continue through midnight. Admission is $10 in advance or $15 at the door. Tickets can be purchased at R-Bar and Grill in West Dundee or pre-ordered by sending an e-mail to info@forjoey.org and picking up the tickets at the R-Bar. Here is a list of the scheduled performers : 2-3 p.m. Bottom Feeders Nov 2, 2005 A visit from Santa Clause last week was welcomed with a smile from ear to ear. Although Joey was unable to make it to the North Pole Jam, we appreciate all of the efforts and time that people put into the event for us. Thank you as well if you went out and braved the coooold day we had to enjoy the performers. The principal from Joeys school came to the house along with His 1st grade teacher to deliver a box of cards from the school along with some candy and a HUGE balloon shaped like lips!! He was excited to see familiar faces at his house. The rest of the week was spent preparing costumes for Halloween. Joey was a Shadow Ninja, Tayler was the Corpse Bride and mom won third prize in a contest as "Slave Leia" from Star Wars. Night time is still quite restless, though new medications are helping a bit. Joey is still mostly the happy boy during the waking hours and spends a great deal of time "guarding" his candy stash. Even though he may not want to eat any, he feels better with the bucket sitting on his lap. His speech is getting very difficult to understand and his frustration when we cannot understand causes him to bang his fist on the table just like Great Grandpa Joe did, even though they have yet to meet. We had a hospital bed delivered this week that enables Joey to adjust his body position via remote control. It has made a world of difference in keeping him comfortable. He is still eating frequently but the speed at which he eats has considerably slowed down. His favorite "Big Breakfast" from McDonalds turns into a 3 course meal that lasts until lunch (and yes, it's STILL lunchtime). He has started requesting softer foods as his swallowing is getting weaker. Keep the prayers coming. Nov 9, 2005 Our precious Joey began a new journey just after midnight, departing this life peacefully as Mom held his left hand, Dad held his right and his oldest sister stood by his side. Please take a moment to look back over the past 7 months to realize what a courageous battle he fought. His final day was filled with friends and family coming to see him to hold his hand, tell him stories and remind him of how brave he is to have fought as long as he did. He was still in typical Joey form, complete with smiles, laughter and shunning away smooches from the girls. Please say a prayer for him, our family, and also for the saints in Heaven that are likely to be chasing him around on his bike right now. Thank you so much for the love and support we have received from everyone to keep us strong as we made every second of my Joey's life as rewarding as it could possibly be. We are as blessed to have such wonderful people in our lives as we are to have spent 7 of the most beautiful years with a boy as incredible as our Joey. We love you, Joey and may your new journey be filled with love and happiness. Nov 10, 2005 We woke up this morning to articles in 2 local papers honoring our Joey. We were elated to see that his story not only made the front page, but was put above anything else on the front page that is going on in the world. You can read the articles while they are still online at: http://www.suburbanchicagonews.com/couriernews/city/3_1_EL10_A3JOEY_S1.htm http://www.dailyherald.com/community/zonestory.asp?id=116677&zone=wdu Joey's wake will be held on Friday, November 11th from 3pm-9pm at Laird Funeral Home in West Dundee. Funeral service will be held Saturday at St Catherine of Siena Church in West Dundee beginning at 9:00am for visitation, mass at 10:00 and burial to follow at the Dundee Township Cemetery in East Dundee. In lieu of flowers, please send donations to the Joey Barry Medical Fund . We have several organizations that we would like to contribute to for helping us make Joey's journey as rewarding as it was. Joey would like to invite any children attending either service to wear their favorite super hero costume if they would like to. I know that Joey would want it that way and I can think of no better way to honor my own personal superhero than to be surrounded by all of yours. Laird Funeral Home 120 South Third Street West Dundee, IL 60118 (847)836-8770
St Catherine of Siena Church 845 West Main Street (SW corner of
Routes 72 & 31) Nov 11, 2005 Please take a moment today to honor all of our Service members, especially those who lost their lives for our country on this Veterans day. The message to me is much stronger now as I try to imagine losing a grown son or daughter through violence rather than being blessed with opportunity that Cindy and I had to spend time with Joey until his passing. My prayers to all of the families who lost a loved one and also to the equally courageous souls of the departed. Nov 12, 2005 The wake last night was breathtaking. Joey already looked like an angel and there were the most ornate flower arrangements surrounding him. Family members spent countless hours putting together picture memorials that really reflected the happiness that Joey shared throughout his life. The sheer volume of people that came to pay their respects to Joey and our families was incredible. Thank you to all who brought their own little superheroes as well. I love them all & hope that they all come away with a positive life experience by celebrating a life as opposed to grieving the loss of one. I didn't even think of it until today, but thank you Joey for getting all of my fellow Marines together on Veterans Day to celebrate. Semper Fi, buddy. The funeral mass was beautiful with Father Dave speaking words in his sermon that couldn't be more true. After the service, the funeral procession, complete with cars, trucks and motorcycles detoured a few blocks to pass Joey's school where Principal Uhl was waiting to ring the giant bell that they use to ring the school year in and out with. It brought tears to our eyes to know that he was so loved. As the procession reached the main road toward the cemetery, the streets were lined with kids dressed like superheroes (have you ever tried to type & cry at the same time?? not easy.) along with their parents holding signs saying goodbye to Joey. It was most definitely one of the most touching moments of my life. We laid Joey to rest in a plot right next to the highway so we can wave to him every time we go past. I'll miss his physical body, but I'm looking forward to living with the spirit he taught us to have. Thank you again to everyone who helped promote that spirit through your support and love for Joey. Joseph Jordan Barry
new journey with his Heavenly Father on Wednesday, November 9, 2005, after an intense 7-month battle with an aggressive brain tumor called Pontine Glioma. to become a first-grade student at Dundee Highlands Elementary School in West Dundee, IL. Although the final months of Joey's life were filled with many challenges, each day was faced with an amazing determination and will to do everything asked of him to remain strong enough to battle the tumor. We invite you to read about his amazing journey at www.forjoey.org.
two sisters, Tayler Barry of the home and Kirsten Barry of Little Angels in Elgin, IL; paternal grandparents, Richard and Nancy Barry of East Dundee; maternal grandparents, Mr. and Mrs. Robert (Larry) Hogenkamp of St. Louis, MO; and great-grandmother, Margaret Huffman of St. Louis, MO. Visitation will be held from 3 to 9 PM Friday, November 11, 2005 in the Laird Funeral Home, 120 South Third Street, West Dundee, IL 60118 and from 9:00 AM Saturday at St. Catherine of Siena Catholic Church, 845 W. Main St., West Dundee, IL 60118 until time of Mass at 10:00 AM. Burial will be at the Dundee Township Cemetery, East Dundee. Joey would like to invite any children attending either the visitation or the service to wear their favorite super hero costume if they would like to. I know that Joey would want it that way and I can think of no better way to honor our own personal superhero than to be surrounded by all of yours. |
