In this week’s blog I am stepping away from writing about something to do with wine and reporting on some events that have to do with my grandson Adler Bear Carris. I have posted a few articles on Adler in the past, but just in case you don’t know about this little superhero, he is a 7-year-old kid with inoperable brain cancer. Like all kids with cancer, Adler is a real hero…or if nothing else, my hero as he is mentally the strongest person I have ever met.
On Monday, October 3, we celebrated Adler’s one-year anniversary without a chemo treatment. It was Monday, October 5th, 2015, when Adler received his last of 53 chemo treatments over a 15-month period. The family celebrated this marvelous event over dinner at Michael’s Italian Restaurant.
The chemo treatments depressed Adler’s appetite, but one of the items he’ll eat morning, noon or night: pasta. So it was off to Michael’s for an Italian dinner. Adler almost always orders the same items: Garlic bread (no cheese and he never eats the crust of the bread), salad with ranch dressing and pasta with red sauce. It was a fun evening and we shared this special time celebrating the end of the ‘not so fun’ chemo treatments.
Adler has had to undergo MRIs of his head and spine every three months in the past 12 months to check the status of his tumors. I am pleased to share with you that Adler’s cancer is stable and his doctors in Chicago say he in a “Golden Spot.” They are so pleased with his condition that they have adjusted his MRI schedule to every five months now rather than every three months. The chemo treatments seemed to have done their job.
He is back in school, his hair has returned and he is growing…all very positive things. We know that his condition can change at any time, although we hopefully can continue to enjoy this “Golden Spot” for some time to come.
Our journey with Adler’s cancer over the last 30 months has been an emotional but eye-opening experience. We quickly learned how expensive it is to be sick in this country. As a consumer of medical services and an employer, I can say that Obamacare hasn’t helped us in any way.
After numerous trips to Indianapolis and Chicago for treatments and long stays in these major cities, I can attest to the fact that the non-insurance-covered costs pile up really quickly. Most families suffer greatly under this financial burden. At times the burden is so great that some lose their homes, jobs and tend to file bankruptcy, and never fully recover financially. I will mention that I wasn’t aware of how dire the consequences can become…What a shame.
Another example of our lack of awareness is the presence and benefit of having Memorial Children’s Hospital in South Bend. Over the past months we have became very aware of the hospital, as Adler received his chemo therapy there. Adler’s Neuro-Oncologist at the Ann & Robert H. Lurie Children’s Hospital of Chicago, Dr. Rishi Lulla MD, as it turns out, is friends with Dr. Colleen Morrison MD, Director of Memorial’s Pediatric Hematology Oncology Department. He suggested that Adler receive his treatments there, as he had complete faith in Dr. Morrison and the hospital.
The ability for Adler to take his treatments at Memorial Children’s Hospital saved us 53 trips to Chicago and thousands of dollars of expenses. Our experience with Memorial Children’s Hospital has made my family firm believers in the need for and support of regional children’s hospitals like Memorial.
Memorial currently has, under construction, a new 100,000-square-foot children’s hospital on its South Bend campus. Like all projects of this nature, a massive fund drive was launched to raise money. Because of Adler’s condition, and now never-ending need for medical attention, our family has become supporters of this project and involved in its fund-raising activity.
Last Wednesday evening (October 5) Mrs. Tiedemann and I, along with my daughter Elizabeth and her husband Aaron Carris and Superhero Adler, hosted a reception at McCarthy’s on the Riverwalk in Elkhart for community leaders. Our purpose was to introduce Adler Bear Carris, inform the group of the importance of this project and to ask for their financial support.
We are raising money in Adler’s name for proposed patient room and common space enhancements, and to name a room or space in the new hospital in Adler’s honor for his battle with cancer. These enhancements are above and beyond the scope of work for the general construction.
We had a wonderful turnout for the reception with 47 people in attendance. I would like to especially thank Dennis and Merril McCarthy, and Tom and Liz Borger, for the use of McCarthy’s restaurant and for the donation of some delightful hors d’oeuvres and charcuterie boards…all served with (of course) several Tiedemann family wines.
Prior to this event we had collectively raised $75,000 in Adler’s name. Thanks to the generosity of a number of people attending our Wednesday evening event, I believe we have raised another $65,000 to $75,000 for this worthwhile project. Thus we believe we have raised, to date, nearly $150,000! Thank you all for your generosity…it is greatly appreciated by all.
If you would have any desire to contribute to this worthwhile cause and the naming of a space after Adler please contact me directly. I can assist you with the necessary paperwork.
Tuesday, October 4, was Adler’s 7th birthday. The day was full of celebration. He had a small party with his classmates at school and a cupcake event with Mrs. Tiedemann and I in the evening. What fun! When his mother was tucking him into bed that evening he told her “I am sure glad I made it to 7.” This is the reality part of a cancer kid…what a shame a 7-year-old, or any kid, has to deal with this.
Fast forward to last Saturday (October 8th) and to the big event planned for Adler…his special Halloween birthday party held at our Lexington Event Center. His mother, grandmother and others spent days decorating the room. It was a spooky place and a fantastic party that would be any kid’s dream. As his mother said:
“We had 32 costumed kids, two zombies, some Notre Dame fencers (Adler is a special member of the Notre Dame Fencing Team), some moms and dads, and grandparents who all had a super good time. Plus we had two piñatas, food (Adler’s menu was corn dogs, chicken nuggets and meatballs), pumpkin decorating, present-opening, and then cake and cupcakes…all to the soundtrack of Adler’s playlist. And oh yeah: more candy.”
For three hours 33 seven-year-olds high on excitement and sugar had a fantastic time. At times it was mayhem with an incredible noise level in the room. Alder had a blast as did everyone else, including grandpa.
Adler told his mother it was the best party yet, because of all his friends and because he was still happy he had made it to 7.
Yes, it was quite a week for all of us…especially for a kid who is thankful he has lived to the age of 7. Over the past couple of years of Adler’s battle with cancer we have had the tremendous support of so many friends and family for which we are forever grateful. This week many of those people came together and helped Adler have some great experiences. And through the support of Memorial Children’s Hospital, maybe in the future we’ll help a lot of other kids, just like Adler, as well.
On Wednesday, October 19, we are having a Hard Hat Tour of the new Memorial Children’s Hospital and a short reception in the prototype rooms following the tour. We would love to have you in attendance. For all the details or to RSVP for the tour please email firstname.lastname@example.org or reach out to me.
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Until next week,
Please join us for these Upcoming Tiedemann On Wines Wine Club dinners:
October 13, UNFORTUNATELY Tonight’s Old World Versus New World Wines Dinner at McCarthy’s on the Riverwalk in Elkhart HAS BEEN CANCELLED.
November 10, Spanish Wine Dinner at McCarthy’s on the Riverwalk in Elkhart, 6:30 p.m.