In today’s blog I would like to update you on some terrific news dealing with my grandson Adler Bear Carris. For those of you who aren’t aware of Adler, he is a great 7-year-old kid with inoperable brain cancer. He also has hydrocephalus and adrenal insufficiency – both of these diseases are life threatening as well.
In October of 2014 Adler’s doctors at the Ann and Robert H. Lurie Children’s Hospital of Chicago informed us, after a year and a half of treatment, that his cancer was stable. Since that time the doctors have monitored his condition by having him undergo an MRI every three months. The doctors also told us that the MRIs would need to continue the rest of Adler’s life, regardless of how long that was. They also said that if Adler’s cancer continued to remain stable, after several of the initial MRIs, they would increase the time in between each MRI so he didn’t have to undergo so many each year.
These MRIs are a three-day family event starting with the trip to Chicago on the Monday prior to the MRI. The MRI is generally on Tuesday and the meetings with his doctors, to learn the results, are held on Wednesday afternoon. As you might imagine there is a fair amount of stress, uncertainty and apprehension that starts to build several weeks prior to the trip to Chicago. Your mind is always on the question of “what are the results of the MRI going to be?” Will it be good news or bad?
In the past Adler has been sedated and anesthetized for his MRIs. He has always been uncomfortable with the whole procedure. The oxygen mask, IVs and the recovery room all bring back unfriendly memories of his days of chemotherapy. He went through 53 treatments in 15 months between the ages of four and five.
A number of months back Adler and his mom and dad began discussing Adler staying awake for the MRI. No more being sedated. They even spent a weekend in Chicago getting a tour of the MRI facility at the hospital and received a complete explanation of the procedure by Adler’s hospital therapist and other staff members. After much discussion Adler announced he would try staying awake throughout the MRI. He said “I can do it.” This was a major decision on his part. The other major decision he made was what movies he would watch while “in the tube.” He chose Toy Story and Toy Story 2.
I need to back up a bit and explain that because of a favorable report after his MRI in July his doctors did change the interval between his MRIs from three months to five months. This was a major event in Adler’s battle with cancer. His oncologist said that he was in a “golden spot” and he also said he didn’t get to tell many of his patients that.
The 5 months were up and Adler’s MRI was scheduled for last Tuesday. On the Sunday before the MRI Mrs. Tiedemann and I headed for Chicago. We went a day ahead of the Carris family, who would arrive as normal on Monday afternoon. We went a day early in order to be available for meetings on Monday with our renovation team at our new (well new to us) Chicago condo. Six months ago Mrs. Tiedemann and I decided that due to the fact that we would be coming to the hospital in Chicago for years to come (we hope and pray that is the case) that creating a home environment there was far superior to us always being divided between hotels and apartments during our Chicago stays. We were fortunate to find a condo unit close to the hospital that fit all of our needs.
Monday afternoon the Carris family stopped by the condo project for a tour. Everyone has important priorities in life. Adler had an important question for grandma and grandpa. He wanted to know if Wi-Fi was going to be available for his iPad. This is important to a 7-year-old. Not long after the tour we all headed to Ditka’s Restaurant for a very late lunch/early dinner. It was a fun family event.
Adler’s MRI was scheduled for noon on Tuesday. Prior to the MRI Adler had to be IV accessed for blood work, etc. Normally, he is accessed in his hands. But since this has happened so many times over the past few years, the veins in his hands are bad and inaccessible. Hard to remember he is only 7. Because of this they had to move up into his arm. The procedure didn’t go well and it was a very difficult time and very painful.
In true Adler style he shook it off and we all walked to the MRI Department. After hugs, kisses and goodbyes Adler and his mom disappeared behind a series of doors and we headed to the waiting room. Almost three hours later Adler and his mom came walking into the waiting room with big smiles on their faces. Adler had done it…stayed awake for the entire MRI. He spent a little over two hours in the tube watching movies and never moved a bit. Mom was by his side the entire time. What an accomplishment for this little 7-year-old kid. This meant no recovery room, no nausea, vomiting or memories of chemotherapy. We walked out of the hospital a happy group but still wondering what the results of the MRI would be. That would have to wait until the next day.
Tuesday evening we all were off to Morton’s Steakhouse on State Street for a celebratory dinner for Adler. The staff, which we know most of, rolled out the red carpet for Adler after they learned the reason behind our family dinner. After his orange juice in a cocktail glass, salad (plain lettuce and ranch dressing), crab cakes, French fries, a lot of pictures taken and receiving a Morton’s hat, he declared “these are happy memories.” And he was right. That is what our family’s life is about now that cancer has invaded us…creating happy memories.
On Wednesday afternoon we were all off to the hospital to meet with Adler’s neurosurgeon and his neuro-oncologist to learn the results of the MRI. It was great news. Adler’s cancer remains “stable.” In fact, they are so pleased with the results (14 months with no activity) that they have again lengthened the time between his MRIs. It will now be every six months. This, friends, is a huge victory. The doctors also stated that if we get two or three more good reports from the MRIs, over the next 12 to 18 months, they may change the MRI schedule to once every 12 months. This report gives us all hope that Adler’s cancer will remain stable for a longer time. However, we realize it could change at any time. So for now we continue to live from day to day and continue to try and create “good memories.”
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Until next week,
Valentine’s Wine Dinner on Saturday, February 11, 2017, at Granger’s Uptown Kitchen. We hope you can join us for this wonderful evening starting at 6:30 p.m. Find the full menu of food and wine pairings and other details here.
Wine Days of Note this Month
- February is Delaware Wine Month
- February 18th National Drink Wine Day
- February 27th — National Open the Bottle Night