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This post is lovingly dedicated to all of our family, friends, neighbors, our TSH Team, the Ladies Prayer Group including the fabulous cooks -all who have made us dinner and prayed for us and offered us positive thoughts and encouragement and the entire Lahey Burlington Liver Center and Transplant Team.
As many of you might know, Tim was diagnosed with liver cancer last Fall. He hadn't been feeling well and had actually voluntarily checked himself into rehab to quit drinking as a present to himself for his sixtieth birthday. (He had been previously diagnosed with cirrhosis and needed some help.) He had successfully completed rehab and when he came home he was hit with this news. Although it was caught early, it was a shock!
At the same time, our business was barely hanging on with PPP loans and the pickup business. We were wondering how we were going to continue. We had laid off most of our Team and were down to a skeleton crew of eight. We were proud of our efforts but were wondering how we were going to continue without being able to cater. Was our business, which we had built for 17 years, going to be ruined by a pandemic?
Sometimes life gives you a lot of blows all at once. You wonder why.
Tim's primary care doctor immediately referred him to the Liver Center at Lahey Burlington for treatment. I immediately started googling to learn about hepatocellular carcinoma and its treatments. I know you're not supposed to do that because there is too much scary information out there about cancer. However, as many of you have experienced, during a pandemic you don't have normal access to the health care professionals you rely on. We needed to know what we were dealing with.
I soon learned that the Liver Center at Lahey Burlington is one of the premier centers in the northeast for the treatment of liver disease. That was reassuring. We are so lucky to have access to the best healthcare here in Massachusetts. We also learned that patients often come from all over New England to Lahey Burlington for treatment. They often have to drive long hours and spend the night. --We are 35 minutes away!
The Liver treatment team at Lahey is exceptional. They treat you with great care and expertise, even during a pandemic. Everyone on the Team from the doctors, nurses, lab technicians, nutritionists, social workers, financial counselors, psychologists is very knowledgeable and caring. We asked some of them what it has been like to work in healthcare at this time. They were all tired, but at the time, the surge was lessening and they were all feeling hopeful.
Tim endured the usual cancer treatments, chemo, radiation, and lots of blood tests & MRIs. He was very brave and open about his experience. I learned that his way of dealing with his diagnosis was the right way for him. He has always been "that guy", the person who is open and honest with his feelings and thoughts, and always eager to help and to listen to others when they were are in trouble. Besides, he was getting sicker every day and wasn't able to hide it.
Here's when things get a bit crazy.
It was winter now, and as we further educated ourselves about treatments for Tim, we learned that a liver transplant might be an option for him. A lot of variables had to come together to make this real. His cancer had to be contained (not metastasized). He had to have shown that he was committed to his sobriety by participating in counseling and drug and alcohol testing. He discussed with a financial counselor how he could pay for it, a $600,000 procedure!! Thank God for our health insurance! He had to have a supportive group of family and friends. (Our doctors were frequently surprised by how much support we have! Apparently, others are not that fortunate. ). He had to be healthy enough mentally and physically to endure the surgery. And last but not least, he had to have a donated liver.
Usually, this comes from a deceased person and is immediately given to the patient at the top of the donor list. Where you rank on the list depends upon how sick you are. 54% of all people who are approved to receive a transplant are still on the list a year later. It is a hard process for both the patients and their caregivers as the patient is usually getting sicker during this time and sometimes is too sick to have the procedure when a liver becomes available.
In the meantime, we also learned that there was such a thing as a "live" liver transplant. This is when a living person who is a "match" donates part of their liver (a graft) to replace the recipient's diseased liver. We discovered that the liver is the only organ that can be regenerated! The donor and the recipient both! We also learned that The Transplant Team at Lahey Burlington does the most live liver adult transplants in the entire United States.
This was all incredible news to us. We relayed it to our family and immediately a distant cousin stepped up to the plate to donate! He lived on the west coast and was willing to stop his life and endure surgery for Tim. Amazing!
Our thoughts then turned to our immediate family. Who could do it the best? Our first thought was Jack, our 25-year-old, who was living out in Aspen managing events for Aspen Ski Co. We called him and told him about his Dad's situation. Without hesitation, he said he'd get this blood tested to see if he would be a match---and it was! After numerous times asking him if he was sure he wanted to donate his liver to his Dad. He said, "Of course, he's my best friend."
All of our kids have a special relationship with their Dad, but Jack and he are the most alike. Jack is kind, generous, and gregarious. He overcame his learning disability of ADD in high school and with hard work got accepted to Johnson & Wales University, where Tim had dreams of going, and received dual degrees, first in Culinary Arts and second in Sports, Entertainment, and Event Management. Like Tim, he also loves tennis and skiing! In fact, Tim worked out in Aspen, for a winter, too!
We told our doctor, Dr. Lin, about Jack. She said there was a whole other team of people who would evaluate him to see if he really was a match. Jack planned to come home in April to start the process.
Now you would think we had it made. Not really, because being accepted as a donor is a detailed and careful process as well. They want to make sure the potential donor is healthy and not being pressured into it by anyone. Of course, the blood and body types have to match as well. (However, I can only imagine what his doctor Dr. Yee Lee Cheah, and the Donor Team thought when they saw our 6 foot 4 inches tall, handsome, "mountain man" walk into their office!) Seriously though, Jack went through many blood tests, MRI, CT scans, Psychological Testing. He was also educated about the procedures which involved taking the lower lobe of his liver and transplanting it to Tim after his diseased liver had been removed. They would be in the operating rooms at the same time. It would take many hours. There would be pain that will be managed. He would have to take a few months off work to fully recover and grow back his liver. His Team functioned with Jack's full interest in mind, separate from what Tim needed.
In the meantime, after much testing, Tim had been approved by the doctors' committee to go on the deceased donor list. A surreal moment came when the counselor told us he could refuse a liver if we thought he could get a healthier one. Huh‽! That was a crazy reality.
It took about a month for Jack to be evaluated. I'll never forget the moment Jack called me at the end of May to tell me he had been approved by the doctors' committee! It was one of the best days of my life.
The surgeries were then scheduled for August. Tim was getting sicker and sicker. He slept most of the day. His skin was yellow. At one early doctor's appointment, his gastroenterologist Dr. M. Valerie Lin asked Tim what was his best quality? He said, "I'm funny!" His sense of humor was now almost gone. He was slowly dying. It was horrible to see.
On the other hand, our catering business "came alive "again as we were given the green light to cater again! (See my last post.) Tim was MIA but our Team was ready to go! We've had a very busy summer despite Tim's being gone. All thanks due to our amazing Team and you, our devoted clients!
Lucky for Tim and Jack, a surgery was canceled and their surgeries were moved up to July 21st. Tim was tested weekly to make sure he was ready. We waited.
On the day of the surgeries, I drove my guys to Lahey for a very early check-in. At that point, they were SO ready to get it done. I was able to stay with them until they were ready to be wheeled in. (There are no waiting rooms during Covid.). Again, I am lucky enough to live close enough and planned to go home and wait in the company of my son Ben and his girlfriend Phoebe, who had come up early from Brooklyn to support me. I was glad I didn't have to wait in a hotel room like so many others.
It soon became obvious to me that the pre-surgery staff knew about Tim and Jack, a son donating part of his liver to his Dad, not the usual surgeries for sure! There was a buzz in the room as nurses, residents, and doctors came over to chat and to wish them well. I believe the guys felt a bit like celebrities the way they were treated! Finally, Tim's surgeon Dr. Caroline Simon came over to tell us it was time for Tim to go in. (She had modestly told us in a pre-surgery meeting that she wasn't good at much but she was really good at putting small things together! She is also an avid Red Sox fan! We loved and trusted her immediately.) I kissed Tim and told him how proud we are of him and how this would make him better! I then went over to wait with Jack.
After about 20 minutes, a nurse came over to tell me that they didn't find any cancer spread in Tim. I was shocked to know that after all of the tests he had, they could still find metastasized cancer during surgery! Apparently, you don't really know anything for sure until you "go in". I'm glad I didn't know this beforehand. It was a big relief of course. Now it was Jack's time to be wheeled in. I kissed him and told him again how proud of him I am, too.
And then as soon as I was dropping them off, I was driving down route 128 back home. Now you might be wondering how I was feeling. My husband and my son were being operated on at the same time! To be perfectly honest, I felt in my heart and soul that all things were leading to this moment. There were just too many things leading us to this day. It was our fate. We were being given this amazing life-saving procedure and I didn't want to feel anything negative about it. As Dr. Lin told me early in the process, "Your job is to stay positive." I never stopped having faith and hope even when Tim was getting very sick.
The operations went very well. Dr. Simon found a blood clot in one of the arteries to Tim's liver which could have been fatal if it hadn't been found any sooner. (Again, you don't know what you will find until you operate.). The doctors called to give me updates and I sat on my porch with my family around me. We celebrated with more family at The Farm restaurant that night.
I felt relieved and very blessed.
Now you've probably forgotten about the "Pie" reference in the title of this post by now. Well, let me tell you, post-surgery we have been showered with the most delicious homemade meals by some of the best cooks on the north shore! (Chef Dave offered up some meals but our business was so busy and we didn't want to bother him.). Word went out that Tim needed to be fattened up (he lost about 40 pounds) and that he liked pie for breakfast. That was all it took! I'm happy to say that with their help he has gained 10 pounds in two weeks! We have also been slathering Kerry Gold Butter on everything and downing it all with whole milk!
He is getting stronger every day, cracking jokes again, and just had a great 7-week checkup. It is so good to hear and see!! He's back! It's a miracle! He has just starting to get out again, taking small local trips with family and friends. Every day is another small step forward. His full recovery should take about 6 months. And the Lahey Team has been with us all the way home with nursing and physical therapy, as well as check-ins with our doctors in Burlington.
Jack just went back to work yesterday. He has good energy and his liver will be completely regrown in about three months. I think he has realized, after the fact, by the reaction of his friends and family what a beautiful gift he has given. He gave it freely and without a second thought. It was a gift of love, pure and simple. There is nothing more beautiful than that.
Jack will be catering a bit, and now has a "side hustle" car detailing business. (Call him at 978-500-5672, if you are local and need your car done!) He's going to Costa Rica in November and hoping to travel to Europe when he can. -- Ah, to be 25 again!
We appreciate all of your prayers, cards, gifts, flowers, and food! We needed it and you were there for us.
Tim remarked lately that in less than a year, he has a new liver, "a new life!" The business he built with our Team has survived a pandemic and his absence. We are so proud of them and grateful for their hard work and expertise.
So much has changed for the better.
We are now happy and hopeful for our future. We are blessed.
With Love,
Chris, Tim & Jack
1. Jack and Tim pre-surgery at the Liver Center at Lahey Burlington. 2. Jack going home after surgery. 3. Tim going home after surgery. 4. Pie for Breakfast. 4. Our dog Bowie, Tim's constant companion, '" on his head." 5. The guys today.