Today’s blog is just a little about wine and a lot about my 4-year-old grandson (soon to be 5). Adler Bear Carris has been stricken with pediatric brain and spinal cancer. My daughter Elizabeth (she has been my wine partner from the beginning of our Tiedemann Wines venture) and I are sharing the writing responsibilities for today’s post. On this one she is doing the heavy lifting and I am, for the most part, along for the ride. Not only do we want to talk about this terrible disease, we also want to let you know about the upcoming benefit and silent auction for Adler, which is being hosted by Adler’s Army on Saturday, October 11, 2014. There will be a lot of wine available in the silent auction. Grandpa is reaching into his personal cellar and the Tiedemann Wines’ warehouse to supply wines for this auction – both to drink and bid on.
We both are going to tell you about Adler, and Elizabeth will give you the history of Adler’s yearlong fight with several diseases (yes, he has more than cancer). It has been and will continue to be a very emotional roller coaster ride in our family’s journey in life. Adler Bear is truly a warrior in this battle.
But first, you might be wondering about Adler’s middle name of “Bear.” It might seem like an odd name for a child, but it’s a pretty cool story. It goes like this: Elizabeth and her husband Aaron are huge Chicago Bears fans and why not? (To my good friend Alex Strati, a Green Bay Packers stockholder, is there any other team but the Bears?) Adler was to be born on a Sunday during the 2009 football season and the Bears were playing the Detroit Lions. Aaron and Elizabeth made a deal that if the Bears won the game that day Adler’s middle name would be Bear. The Bears won the game with a final score of 48 to 24 and the rest is history.
Our dear Adler Bear began having pains in his buttocks late in the summer of 2013. It was first thought that the cause of the pain might be over activity on the new swing set or surplus growing pains, as he was getting bigger by the month. As the amount and frequency of the pain increased, a heating pad was added to more doses of children’s Motrin. Next came visits to Adler’s pediatrician and other doctors with no successful diagnosis. The pain and the frequency of the attacks of pain grew worse by the week. As more doctors and hospitals were visited, the diagnosis got worse.
Let me set the stage for Elizabeth’s portion of the blog by saying that on May 16, 2014, Adler was admitted to the Ann & Robert H. Lurie Children’s Hospital of Chicago (at Northwestern University). In less than 24 hours our family’s world was turned upside down and none of us will ever be the same again. From this point, I’ll let Elizabeth continue the story and supply the facts of Adler’s amazing journey.
Adler Bear Carris is our 4-year-old son with hydrocephalus and pilomyxoid astrocytoma cancer of the brain and spine, and severe chronic pain.
Adler Bear was diagnosed with a pain disorder called Arachnoiditis on Feb. 18, 2014. This is a very important fact to remember. After several weeks of pain and seeing several specialists at Riley Hospital, we were simply given this diagnosis, handed a prescription for steroids and told to find pain management. The diagnosis was grim because Arachnoiditis is a chronic illness of constant pain with no cure. I researched relentlessly (from coast to coast) searching for a pain management source that would accept a 4-year-old. I found only “No” everywhere I looked.
During that time, after not having much luck with Adler’s pediatrician, we found a new general doctor in Granger, Indiana. Dr. Hsieh agreed to work with Adler. Today I am here to say he was a Godsend.
While I searched for a pain management source, Adler had physical therapy two days a week in an effort for him to regain strength lost due to all the pain and the side effects that go along with the disease. We got him off steroids in April and tried substituting other drugs. About this time he began developing bad headaches and vomiting. We just thought he was sick. We then found a doctor in Florida who we thought would treat him for his pain. He billed himself as a pain management specialist, specializing in Arachnoiditis cases. That effort fell through due to Adler’s age.
I became desperate because the pain and the headaches had increased and his mobility was decreasing by the day. His fun-loving attitude was slipping away as well. He was deteriorating right in front of us. I began to look up more and more numbers to pain clinics…trying to find a doctor who would listen, take on his case and treat him. I was determined to find him SOMEONE. We found hope in the Rehabilitation Institute of Chicago. Same drill: get him off steroids and use the medication Gabapentin. However, they didn’t seem as interested in Adler’s case as we had hoped they would. The increased pain, headaches and vomiting continued.
Back to Dr. Hsieh who was keeping a close eye on him while he was taking the Gabapentin. Finally, as the headaches worsened, he began suffering from dizziness as well, and his vomiting continued with a little more intensity. I became very alarmed and concerned. On Wednesday, May 14, 2014, when he ended up fainting twice in about an hour and had vomited after each time he fainted, we rushed him to the emergency room at Elkhart General Hospital. All this time we had assumed the symptoms were somehow connected to the Arachnoiditis. The ER doctors attributed it to pain-induced syncope, gave him morphine and sent him home.
The next morning we took Adler to Dr. Hsieh to be examined. He told us to get him to a children’s hospital as soon as we could or his worsened condition would consume him. We packed and left Friday, May 16, 2014, for the emergency room at Lurie Children’s Hospital in Chicago. While in the ER Adler was examined by several doctors who immediately admitted him that evening. Shortly thereafter he underwent a 2-hour MRI of his head, neck and full spine. The results that came back were astonishing. As we stood and looked at the image of his head full of fluid I almost fainted. It was over three times the normal amount. The pressure inside his skull was causing all his symptoms and pain. He did not have Arachnoiditis at all. Could the Riley diagnosis have been wrong? Adler had Hydrocephalus which is commonly known as “water on the brain.” They also found a mass just below the neck in his spinal column. They gave us some options on treatment for this and left us to sob in the waiting room.
At 3 a.m. they came back saying he needed to have emergency surgery to install a permanent shunt and drain tube in his skull. This would allow the fluid to drain into his abdomen. All the while he was in absolute agony…screaming and crying in extreme pain. At this point we knew it was critical. Early Saturday morning we met Dr. DiPatri, the neurosurgeon who would perform Adler’s surgery, and he went over the MRI results with us again. He also confirmed that he did NOT have Arachnoiditis. We were stunned. He had, in fact, been misdiagnosed and treated with steroids for a horrible disease he DID NOT HAVE!
They immediately did the shunt surgery and a lumbar puncture to test his spinal fluid, which came back clear and negative from pathology. We spent the next five days in the hospital after his surgery.
It is certain that the surgery saved Adler’s life. He had been at death’s door prior to the surgery. I would imagine we saw over 30 doctors and nurses throughout his stay at Lurie. He also has developed adrenal insufficiency due to being on steroids for so such a long period of time (various steroids are standard treatment for Arachnoiditis). Today, along with his neurosurgeon, Dr. DiPatri, Adler has an endocrinologist and an ophthalmologist who are treating him for nerve issues and damage done to his eyes due to the massive amount of pressure he had in his skull, caused by the Hydrocephalus. So he now has teams of doctors from several areas of medicine working on his case.
We finally found help. We finally found someone to save our little boy. Within hours of the surgery he improved. And within days he was moving, talking and acting like the little boy we knew a few months before. He went there in a wheel chair and walked out of the hospital to the car when we left. He had refused to walk for a week before the surgery and at least three weeks before that he couldn’t walk without assistance.
He is such a strong boy. I admire his strength and determination so much. The doctors and Lurie Children’s Hospital saved his life. God listened to our prayers. Adler is a true miracle and a true SUPER HERO!
We aren’t out of the woods yet but we can at least stop and enjoy the scenery now! He is ‘Bold As Love’ and everyone at that hospital is in love with our little Adler Bear. Through sheer madness, determination, persistence and not taking ‘NO’ for an answer, we got him to the right place with the right doctors to help him. Thank God! We will keep going until he can have a normal life and live how a 4-year-old little loving boy should. He still has pain in his buttocks and that is still an unknown to the doctors so we are anxious for that cause to be found and treated.
Several weeks after his first stay at Lurie we ended back there for an extended stay of two whole weeks due to increased pain. During that time he had another series of MRIs and further tumors were discovered on his spine and on his brain. A biopsy was performed on the tumor located on his lower spine. After waiting for full pathology results they diagnosed him with Grade 2 Pilomyxoid Astrocytomas, or PMA, which is a rare form of cancer. He had a port placed in his left shoulder while he was there in preparation for his chemotherapy treatments. Those began on July 10 here in South Bend with a local doctor who came very highly recommended by Dr. Lulla, Adler’s oncologist at Lurie. Adler will have a treatment once a week for the next year…pretty tough treatment for anyone, let alone a 4-year-old.
All of this experience has taken a huge toll on our lives. How to be normal after all of this is a mystery to me. We are staying strong and hopeful. The prognosis is 50/50 that the chemo treatments will work. Let’s pray that it does and that those tumors will shrink and he will be back to running and jumping in no time! He has two spots on his brain and tumors in his spinal column, all of which are inoperable. So the chemotherapy treatments are our only hope. His pain is still there and he is on a Fentanyl pain patch and takes liquid morphine for the pain. He has suffered enough pain in the last nine months to last him and 10 others a lifetime. Please share Adler’s brave story. And do keep him in your thoughts and prayers.
Thanks to you all,
Cancer is a terrible disease, it can and does affect anyone at any time. It doesn’t matter who you are, how much faith you have or how much you have materially. Because of Adler’s condition I have become much more aware of cancer and the many people around me who are dealing with this disease. It is amazing the number of people who are affected. Until now, I never imagined how many children are affected by cancer. Every day in the U.S., 46 children are diagnosed with cancer and seven die. Childhood cancer is the number one killer of all children. It is estimated about 91,250 kids worldwide die from cancer each year. The chemo drugs that were approved for adults over 20 years ago are what they are using on kids today and only 4% of all cancer research funds are used for childhood cancer. It seems to me we can do better than that.
As I said, cancer can affect anyone at any time. Last week I received an email from the Napa Valley vineyard Dalla Valle (I am on their mailing list). They produce two highly rated wines: the Dalla Valle Cabernet Sauvignon and their Maya Red Wine. They also have a new offering called Collina Dalla Valle. It was this last wine that the email concerned. It stated that they were announcing a Special Release of the 2011 Collina Red Wine. The sale of which was for the benefit of three local Napa Valley charities: Clinic Ole, Napa Valley Community Disaster Relief Fund and the UCSF Brain Tumor Fund for Pediatric Brain Cancer Research. Dalla Valle intends to donate 90% of the proceeds from the sale of this special wine release to these three charities. Also available in this release are a number of Collina Red Wine magnums of which 100% of the sales will be donated to UCSF Brain Tumor Fund. Because it is a winery and I believe this is a rather generous offer, I wanted to mention the Dalla Valle offering and call attention to it and the many individuals and organizations that are involved in the fight against Pediatric Cancer.
I called Dalla Valle to ask if it was ok to mention this charitable program in this article. After a series of phone calls, I spoke directly with Mrs. Naoko Dalla Valle, owner of the winery. I learned in the conversation that recently Mrs. Dalla Valle’s 11-year-old nephew had died from Pediatric Brain Cancer. I shared with her Adler’s fight with cancer and further told her that I felt she deserved some recognition for her generosity. She is certainly doing her part to beat this awful disease. It is going to take a lot of generous people like Mrs. Dalla Valle to beat childhood cancer. Yes, I bought a case of wine and a magnum!
As I was writing this story over the weekend I learned that another person I recently met in the wine business, Steve Mirassou of Mirassou Wines, (located in Livermore California south of Napa Valley) was being affected by cancer. Just last week Steve’s wife June was diagnosed with brain cancer. Our hearts and prayers go out to Steve and his wife.
Several months ago several of Elizabeth’s friends approached her about putting on a benefit for Adler. These few friends and others have now grown in to what is referred to as Adler’s Army. The plans for the benefit have come together and it is now scheduled. The information is as follows:
DATE: Saturday, October 11, 2014
LOCATION: FOP Lodge, 1003 Industrial Parkway, Elkhart, IN 46516
TIME: 4:00 – 8:00 p.m.
DONATION: $10.00 at the door, or there are some advanced ticket sales at FIX Salon on Lexington in Elkhart and BuyMeToys.com on Grape Road in Mishawaka
A detailed flyer is attached (to the right) with more information and further details on the auction. I can tell you there will be many items in the silent auction to bid on including, of course, lots of wine. Wines such as Harlan Estates, Caymus Special Selection, Hillside Select, Dominus, Tiedemann Red, Glenwood Cellars, White Oak and some French wines to name a few. As I said earlier, it is my job to come up with all the wine and I have with some real gems for all of you to bid on. You will not want to miss out on this event. As they say: bid high and bid often!
I am very proud of the fact that Elizabeth and her husband Aaron have, and are trying to handle all of the financial responsibilities of their situation in their own way. The two of them are fine; it is Adler’s uncertain future financial needs that are so worrisome, and that’s what this benefit is all about. Adler’s Army has put a lot of hard work into organizing this event and we all appreciate the support many of you have given us to date.
So, if you aren’t doing anything on Saturday afternoon, October 11, stop by the benefit for glass of wine and some great food, being supplied by Lucchese’s Restaurant, and put in a bid on some of the fabulous auction items.
There are also two other media pages that are set up for Adler that you may follow:
We appreciate all of your prayers, thoughts and kindness to date. Our heartfelt thanks go out to each and every one of you.
As always I appreciate your support of our wine blog and encourage you to share it with family and friends. If you care to share your comments on this blog posting or other topics please do so in the comments section below.
Until next Thursday,