Cancer
I have found that some people are curious about what it’s like to have a child with cancer. Most people can’t imagine what families go through once they hear the words “Your child has cancer”. I have found that it is a rare exception for someone to ask me about it, maybe for fear of upsetting me, or maybe because it’s too painful to hear, and certainly because we don’t know how to talk about. I believe the difficulty of talking about it is what makes life after losing a child so isolating and lonely. But most parents want to tell their story. For me, my greatest fear is that Tessa will be forgotten. So if you’re interested and want to know more about Tessa’s cancer but don’t want to ask, this is our story… (I will add some pictures soon)
With Joy,
Letitia (The Proud Mother of Tessa Joy)
So believe it or not, Tessa got Cancer! One day in December 2013 after a typical water polo practice, Tessa came home and didn’t eat. And she complained about a pain in the center of her chest. We weren’t parents to rush our kids to the doctor for minor things, but something told us to take her to urgent care the next morning. We would get her back to school in time for her English class.
They did a chest x-ray and saw an unusual mass in her mediastinum, sent us to Dominican in Santa Cruz where we could get a CT Scan and some blood work. That was her first experience with needles, not something she was at ease with. By the end of the day we were instructed to stop at home to pack an overnight bag, as we were headed to Lucille Packard to meet with a doctor at the Bass Center for Childhood Cancer and Blood Diseases. We were certain it would all be a mistake and perhaps make for a good essay in the future.
Something like this was very unusual, indeed. The doctors were unsure what it was, so they quarantined her and ran many many tests, many many pokes, many scans, many times to hold hands. A biopsy was needed, so she went in for a pretty scary surgery to biopsy the mass in her lung. Super scary, but still Tessa remains smiling…
The diagnosis was cancer. Specifically, it was Large Cell Neuroendocrine Carcinoma of Pulmonary Origin, Metastasis in her liver and bones.
Lung Cancer. ..seriously? at 16 years old!
I can only say that we were in a state of disbelief and denial. This was our Tessa! Not possible, right? Well, as rare as it was that she had this, she would get rid of it, too. Tessa was healthy; she never smoked, never drank or imbibed in any drugs, she never even drank a soda or ate fast food! Really, never! Too many options for good healthy food. I made her lunch every day and filled her thermos with good food. And she seriously thanked me every day! She never even ate her Halloween candy. She liked milk… (sure, we later tested our house, our water, everything. No radon, nothing bad, no explanation…)
The recommendation was for Cisplatin/Etoposide, 6 rounds. Nasty stuff: side effects could be secondary cancer, sterility, nausea, hearing loss, nerve damage, kidney damage, anemia, etc. What choices did we have? None… There were some new adult immunotherapy clinical trials, but she wasn’t 18, plus a qualification was to have first failed a platinum based therapy.
In an instant, we had a support group like you have never seen! It takes a mountain—you would just not believe what we came home to a week before Christmas. Our support just grew over the year, and it held us up, and Tessa felt so special and loved.
There was never a thought that we might lose her. Not really… Well, we can all access just about anything on the internet these days, and clearly the statistics were grim. But there were no statistics for someone her age. And even dire prognoses have their exceptions. You hear about people who survive the most threatening types of cancer, people whose chances, statistically speaking, seemed to be nil. So we made a conscious decision to never look or dwell on statistics or prognoses, we would defy the odds! We would heal Tessa’s body, mind, spirit! It wasn’t just positive thinking or false hope, we truly believed it. She would be our miracle. Our Joy.
We researched and consumed countless books—Radical Remission, the Power of Belief, Cancer Diet Books, etc. We consulted with many doctors across the country and even in other countries. We did the Foundation One DNA sequencing that looked at 405 genes. No known alterations, not even those common in a typical lung cancer mutation panel: (EGFR, K-RAS, ALK) therefore, no known alternate therapies.
So her amazing doctors had nothing to try except platinum based drugs that have been used without much success since the 70s. , (by the way, funny they always seemed to be wearing purple on days Tessa had appointments. Everyone seemed to know she liked purple)
I didn’t need to be a doctor myself to realize that this was a big deal, and we needed to do everything we could to not just treat the cancer, but we needed focus on Tessa as a patient and compliment the chemotherapy to at least keep her comfortable, vibrant, and strong during treatments. I immediately quit my job so I could be a fulltime caregiver, researcher and master scheduler. We wanted to integrate as many natural therapies as possible to help with side effects such as nausea, weight loss, constipation, pain, anxiety, fatigue, low blood counts. We began immediately with alternative therapies and palliative care. (It’s important to note that palliative care is not the same thing as hospice, although I think people tend to equate the two. )We were assigned a social worker through Lucille Packard, we were always surrounded by friends who kept us smiling and happy—I can’t say enough about laughter therapy, we worked closely with a Naturpath, the best cancer nutritionists at Stanford and UCSF, an Integrative MD who combined western and eastern medicine. We had acupuncturists, acupressureists, massage therapists, bio feedback, we began meditating and going to Qi Gong classes, we did medicinal Qi-Gong, we had a reflexologist, and even 3 energy healers. It was actually a delight meeting and working with all of these people who had a common interest of helping to heal Tessa and keep her comfortable. Tessa and I often talked about all the Silver Linings… the people we met… the new things we were exposing ourselves to…
Tessa was so loved that everyone wanted to help, although I always explained that it wasn’t a money problem, but still our community had what they called a Backyard Bash fundraiser and raised over $25,000 for us. They wanted us to use that money on things that insurance didn’t cover, things like massages, acupuncture, Qi Gong, candles, aromatherapy, furniture, anything. Looking back, it is all the extra therapies, the diet, the laughter, and the relaxed lifestyle we kept that promoted Tessa’s ability to live such a full life while undergoing harsh chemotherapy. We were warned that with the Cisplatin, she would likely need blood transfusions after treatments. She didn’t! She seemed to be thriving. Besides the cancer, she was otherwise so healthy and grounded.
Tessa never cried during any of this. In fact, she embraced this journey in the most beautiful way. Her friends donated hair to make her wigs, but she embraced being bald. She did things like name her surgically implanted Port “Portricia” and introduced Portricia to all the nurses and doctors and often referred to Portricia as her best friend. She brought Joy and laughter to everyone she encountered. We had many celebrations as scans showed tumor reduction.
While she was undergoing chemo, she stayed in school (even though she had to wear this protective mask, took her SATs, applied to colleges, attended water polo games, and tried to carry on with a normal life. Her incredible dedication to nutrition kept her comfortable, vibrant and strong. Cancer nutrition for children is what she became passionate about and wanted to do for her future career. With me, she attended the 2014 ACS CAN breakfast in Palo Alto and planned to one day be a guest speaker as a survivor. She wanted to talk about how nutrition and complimentary therapies kept her healthy and strong. She got to Make-a-Wish, where she chose to go to NY with her 2 best friends to meet her favorite author , John Green, whose book, The Fault in our Stars, was premiering as a movie at the Zigfield. She looked like a movie star, yet this is the new face of lung cancer?
Her cancer came back in summer while we were sailing in Croatia—well it likely never went away. It was aggressive. More treatments, more issues, but we never lost hope. She still never cried. I never cried. But I do now. I think she took care of me as much as I took care of her.
At that point we were getting wiser about how we needed to treat Tessa as a whole person and not just treat the cancer, and scheduling so many outside appointments was becoming tiring and time consuming when Tessa needed rest. So we reluctantly left Lucille Packard Children’s Hospital for an Integrative Oncologist up in San Francisco. We loved our doctors and the care we received at Stanford, but this doctor had unique approach for cancer treatment and Palliative care, as he integrated traditional medical practices with advanced support in Chinese medicine and acupuncture, integrative psychotherapy, oncology massage, nutrition, and body conditioning and fitness. His office and infusion room were more of a spa setting than a clinical setting, and his staff were the most professional and loving group of people I’ve ever encountered. I observed each patient being hugged by the doctor before he personally started each IV. Tessa would either stay in her reclining chair in the infusion room or be gently whisked off to the massage room or acupuncture room and have a treatment literally while she was receiving her chemotherapy. It all reduced her anxiety, calmed her down, made her feel safe and loved. The infusion room looked out over the San Francisco Bay, nice music, healing tea, personal attention from the nurses, massage therapists, nutritionists, and acupuncturists. It actually made us look forward to our appointments. This is, in my humble opinion, is how all cancer patients should be treated. A one stop shop integrating oncology with palliative care. Oh, and if someone didn’t have insurance coverage for the extra services, everything was on a sliding scale based on what you could afford. It was free for many of his patients.
We still had so many great things happen Support and love for her never wavered. She was Homecoming Queen at her high school. We knew there were new issues with her bones and liver, but there was always a positive scan or blood-test or something to keep us looking on the bright side.
The PDL-1 immunotherapy clinical trials that we had looked into early on were still not available to Tessa, as she was not 18. But by now she had failed at a platinum based therapy and we wanted to explore a trial. For any of you who have been involved in clinical trials, you know that they are by design, controlled, very strict, and the pharmaceutical companies can’t make exceptions or change the rules mid-stream. And they can’t hand out the drugs early on a compassionate basis, especially when they haven’t finalized dosing standards. Our far reaching network of friends and Tessa supporters, or Team TJ, somehow got the attention of a major pharmaceutical company and miraculously the wording was changed to allow 17 year olds into one particular trial. We left immediately to travel to interview and test for PDL1 expression, and Tessa’s blood sample was sent to a special lab across the world for the test. We patiently waited for results, but it turns out results were consistent with the previous Foundation One results which showed no expression. We couldn’t pursue a trial any further, but we could potentially wait until FDA approval, as breakthrough status was on the horizon. As a side note, I know immunotherapy is very promising for many patients, and now there are several that have been FDA approved: Keytruda, Tecentriq, Opdivo. But we have to be careful to realize that these aren’t cures and we have a lot more work to do. Just reading the fine print on the new ads shows that the median life span is improved to 13.8 months, just 4 months longer than that of chemotherapy. I know that it’s a statistical improvement and a step worth celebrating, but it is clear that we are not there yet.
Halloween, Thanksgiving, Christmas. They all passed with mainly ups and a few downs. Her plan was to celebrate her 18th birthday in Tahoe skiing with her closest friends. The last picture I have with her was taken December 16th at a theatre production in SF. At New Years we toasted to remission in 2015. However, on Jan 3rd we took a turn for the worse and were admitted to the ICU back at Lucille Packard Children’s Hospital where it all started, basically her liver was failing, and she passed away on January 7th. I lost the love of my life, My Tessa Joy.
I don’t think Lucille Packard has ever had so many people sleeping in the chapel as that night. She was surrounded by the love of so many family and friends. I saw her doctors cry that night. She brought so much Joy to everyone.
If love, money, nutrition, laughter, medicine, and a positive fighting outlook could cure cancer, it would have, indeed, cured Tessa. We simply don’t have treatments available. We urgently need to get better treatment options in the hands of these wonderful caring doctors so they don’t have to watch their patients die. We can’t continue to have family and friends suffer with cancer. It’s all too common.
It’s heart wrenching for me to share Tessa’s journey, and I died a bit too that day, and it hurts to see the huge void so many friends and family have in their lives without Tessa nearby. I miss her so much! But Tessa’s story and others like hers need to be heard. We need to demand that cancer research becomes a national priority and push for legislation to make adequate funding happen. We need to raise awareness and reduce the stigma associated with Lung Cancers, and we need to work hard together to develop new and effective treatments and early detection methods. We need to push for Palliative Care.
Today I will choose Joy knowing that I managed to tell Tessa’s story and maybe, somehow, it made a bit of a difference. Please choose Joy for yourself today!