Who is YALLA?
In the criminal world we live in, the plague of cancer is considered especially heinous, in San Diego, the dedicated patients and doctors who support one another through this disease are members of an elite squad known
Young Adult Leukemia and Lymphoma Alliance (YALLA).
These are their stories. (*Dun Dun*)
My wife, Dani, and I were newlyweds living in New Zealand at the time of my diagnosis. We got married there and waited 6 months to honeymoon in the US during the northern hemisphere summer. What I thought was a lingering cold landed me in a regional hospital in upstate Idaho, three days after arriving stateside. Within an hour the ER doctor returned my blood tests with "You have AIDS or cancer". Chemo started three days later. Two weeks later I got a life-flight to UCSD to continue treatment. As a honeymoon, I don't recommend it.
Obviously our story doesn't end there. Chemo (Cytarabine + Daunarubacin, Fludarabine + Busulfan) led to an allogeneic stem cell transplant. 11 months after diagnosis I returned to work. Cancer nearly stole everything from us, but we persevered. Through love and stubbornness, patience and fortitude, a dark sense of humor and open hearts, we survived. Thousands of people from around the world supported us through this experience and now we pay it forward. Besides YALLA, we're active in the UCSD Moore's Cancer Center community and the San Diego chapter of the Leukemia and Lymphoma Society.
We never made it back to New Zealand, but we did go to Iceland for a second attempt at a honeymoon. Read about our full journey at teamfontanesi.com
I’m Elyse and I’m 25 years old. I was diagnosed with Acute Myeloid Leukemia at age 23 in 2016. I received my bone marrow transplant in April 2016 after a very kind stranger in Germany was found as a match. Through my treatment I had very supportive parents and grandparents that let me live with them and took care of me during the process. I was very fortunate to have a wide network of support from my friends, family, and hometown community. While I cannot say the process was enjoyable or easy, I am now feeling much better and happy to be finding my independence again as I am working and going back to school to become a nurse.
In the months before diagnosis, I had just moved down to San Diego and was adjusting to my life as a new college graduate, finding my bearings in life and figuring out what career I wanted to begin. It was naturally a fairly stressful time trying to navigate life as a young 20 something beginning the next 45 working years of my life. I did notice that my body was doing some strange things, like bruising easily, losing weight, and bleeding from the gums. I took these symptoms seriously but also looked past them as a stressful time. It wasn’t until I went home for Christmas that my family noticed my fatigue and ware and agreed that I should see a doctor. The morning after my appointment, I received a call at 6:30 am telling me to go to urgent care. I arrived at the hospital at about 8:00 and I didn’t leave for over 3 weeks. This time was of course stressful and confusing, filled with information and decisions, and physically enduring. I began my chemotherapy immediately but did suffer complications from the medicine throughout. I experienced serious neutropenic typhlitis, leaky capillary syndrome, and lots of small complications. I don’t look back on this time fondly of course, but I am very lucky that what stands out the most during this time was the support I received from my family and friends. My parents were amazing and I am so grateful for them. My grandparents who live in San Diego didn’t hesitate to let me move in with them, which was incredibly kind. And my other grandparents that live in northern California constantly supported me and my family. I was so lucky to have friends that cared and checked in with me, and family that helped my parents get through everything. My hometown community was so supportive in sending me care packages, taking food to my parents and younger brother when one of them was down here with me, and covering for my mom in her job as a teacher at the elementary school. Without these factors I’m not sure how I would have made it through.
Despite having so much support, however, I found that I still felt somewhat alone. No one could identify with my experience, and I wouldn’t want them to be able to, but it left me feeling like I didn’t know how I could really make it through. Even though people made so many sacrifices for me that I can never truly repay, I was in the end the one who had to give up my new job and future prospects, and truly endure the physical aspects of the disease. As I remained grateful for everything everyone did for me, I couldn’t help but feel like I was still the one who was most victimized.
Joining YALLA, I was really looking for a community that could understand this feeling. I’m so grateful that I’ve found it. It can be challenging to manage your symptoms while also making sure that your support system feels appreciated. It is so nice to talk with a group of similarly aged people who had to go through the jolting experience of losing independence as a young person just beginning their adult life, and relying fully on loved ones and doctors. The feeling of losing control is something that I’ve struggled with, and it’s very nice to be in a community of people that can speak to that feeling as well and be able to identify with my experience.
It is our ultimate goal that this group can form a bond between people all across the country so that there is never someone who feels like they are alone in a particular feeling or experience. I hope to be a part of this great expanding organization that can supply the tools or advice that someone needs to hear.
Hello, my name is Lyndsay Nishioka. I am 32 years old and I was diagnosed with Acute Biphenotypic Leukemia at the age of 22. BAL is a very rare type of leukemia in which both types of acute leukemia (ALL and AML) are present within the body at the same time. It is estimated that only about 5% of those diagnosed with acute leukemia have biphenotypic leukemia. I was told that treating this type of leukemia can be challenging and that I was going to have a pretty aggressive treatment plan.
I was living in Montana when I was diagnosed, getting ready to go on a three month mission trip to Africa. I had been sick all week and thought it might be good to get checked out before embarking on my trip to Africa. So I had gone to the emergency room and was told I needed to stay overnight due to some abnormalities in my blood work. That next morning a doctor came in my room to give me the news that I had a white blood cell count of 59,000 and he was 99% sure that I have leukemia. So I had to make that dreaded call to my family in California and was taken on a private flight straight from the hospital in Montana to San Diego where I would start treatment at UCSD.
Life has never been the same since that day back in 2008. I moved into the hospital for pretty much that entire first year. I underwent high dose chemotherapy for 5 months and still my bone marrow biopsies were showing cancerous cells present. So I then went on to have 2 weeks of total body irradiation (TBI) to wipe everything out and get ready for my transplant. My two brothers were not a match so they had to look in the NMDP and found no one in the states that matched, so finally they broadened the search internationally and found a donor in Germany. He was not a perfect match but the doctors thought that it was going to be the best I was going to get. So on September 18, 2008 I had my bone marrow transplant and have been in remission ever since.
Many times you say remission and everyone is congratulating you and saying “congratulations you beat it”. But quite honestly life has been sooooo much harder post-transplant. I have struggled with GVHD, anxiety, depression, a 90 pound weight gain from steroids, pain, chronic nausea and vomiting, and major damage to my gastrointestinal tract. Just to name a few ;). I am 9 years post-transplant and I definitely thought my life would be great and back to normal by now. The reality is that I still have not been able to re-enter the work force, I still live with my parents, dating has been nonexistent, I usually have some kind of doctor’s appointment every week, and I just feel so alone!!!
That is why I am so excited to have found YALLA. I had been dreaming of a group such as this for 9 years and just after attending my first meeting I felt so connected to everyone because of our shared experiences. It felt amazing to hear that I am in fact not alone and there are others who understand how I am feeling because they too have walked this path. At the time I was going through treatment, there was no one my age and no one I could relate to. The young adult cancer community is really non-existent in most places and yet it is such an important time in our lives. We need support! We need community! I just want to encourage anyone who is going through this difficult journey to connect with others. Know that you are not alone and all the anger, frustration, trials, and emotions that you might be going through we all have probably gone through as well. I just hope that I am able to share any wisdom that I may have gathered over the years and help other patients, while at the same time obtaining the support that I desperately need through the others in the group.