Tawan and I met and fell in love over a decade ago and got married 5 years ago. We had the most amazing baby boy, Valen, last June (2012). We were so happy, still very much in love, and extremely tired…all to be expected. We were both working hard, trying to get things in place so we could buy a home soon and continue our dreams of having successful careers while raising and caring for our beautiful baby and awesome little dog. Then Tawan started noticing some strange symptoms at the end of last year. First, he started having dull (in the background) headaches. Next, he had an eye twitch that wouldn’t go away for the entire month of February. Also in February, he noticed that his vision started acting strangely.
He says it was like someone had turned a bright light on after being in a dark room for a long time. Then he had trouble putting his words together while on the phone with one of his colleagues sometime back in mid-April. Being a communications major and always an eloquent speaker regardless of topic, this was a big concern. He got off the phone, went into the living room with Buddy (our little dog), and tried saying the alphabet. Sadly, he had a difficult time. I came home shortly afterwards and heard what had happened. We made an appointment to see his doctor at Kaiser, our provider at the time. The doctor said it was probably nothing to worry about, but ordered an MRI just to make sure. Once the results came back, they called to tell us he had several masses in his brain. I’m sorry, what???
At first, we were told the masses were “tubers” and that he probably had an extremely rare genetic disease called Tuberous Sclerosis (TS). This was very strange in and of itself, but also because the characteristics of this disease weren’t anything that resembled Tawan. People with TS, first of all, are children. These children typically have noticeable white spots on their skin. They have major developmental disorders and very serious learning disabilities. A lot of the time, kids with TS have autism. None of this was anything close to resembling Tawan. His skin is fine, he is extremely intelligent (really great at Jeopardy, as a matter of fact and, quite frankly, completely amazing in every aspect of his life. No, this didn’t sound like a match. This possible disease was very troubling to us not only because of Tawan, but the genetic nature of it put our son at a very high risk. Valen, who was only 9 months at the time, could definitely be influenced by this diagnosis. He would have a 50% chance of having this disease if we found out that his daddy had it too.
Valen would then be susceptible to all of the awful things I mentioned above – developmental issues, severe learning disabilities, autism, etc. We were scared. After looking at the MRI with the Kaiser neurologists, we found out that he not only had tubers in his brain, but he also had tumors. They were thought to be benign, but they were tumors nonetheless. After seeing many specialists and had, what we found out later to be several seizures (speech problems, unexplained vomiting, extreme fatigue), it was determined that Tawan had a great deal of pressure inside his brain and surgery was imminent. Now we were really scared. Surgery took place on June 6th 2013, but the tumors remained. The large tumor they went in to remove that day looked too much like the surrounding tissue, so they were only able to take out enough of it to send to pathology.
The pressure was released and a shunt was inserted to relieve any possible future buildup of fluid. The doctors told me in the waiting room after the surgery that it was a success, even though they didn’t remove the tumor. The pressure was down and he should be okay. He had several crazy days in the ICU and was released the day before our son’s first birthday. We were SO HAPPY to be home celebrating our baby’s birthday with him and later that week, Father’s Day. Things were really looking up. At least for a little while. Only two short days after Father’s Day, we were back in the Emergency Room.
Tawan was experiencing intense (and still unexplained) stomach pain. Once in the ER, Tawan’s mental status became severely altered. He stopped responding to simple tasks that the doctors were asking of him. The CT scan showed that the tumor was hemorrhaging. This was really bad news. We were taken back to the ICU. That day, June 18th, the Kaiser neurosurgeon who performed the surgery told me the news – UCLA pathologists had determined Tawan’s tumors were not benign like they (Kaiser neurologists and pathologists) had all told us several times already. In fact, they were the exact opposite. CANCER. And not just any cancer – the worst possible brain cancer – glioblastoma multiforme.
Everything went into slow motion for the next 24 hours. Luckily I was surrounded by close family and friends that day/night as Tawan lay asleep in the ICU, because our lives were crashing down around us and I didn’t know what to do. Since that dreaded day, our lives have been a fast-paced race trying to get answers about what is best for Tawan, his health, and our family. Our friends and family have been absolutely amazing. Our support system is large, well-oiled, out of state and out of country. They have been our around the clock supporters on everything from medical, emotional, financial, managerial, organizational, you name it, they’ve done it. We are still trying to keep our heads above water in many aspects of our new “normal” lives. We are doing great considering everything that is going on, and we are proud of ourselves that we’re still moving forward with our heads up high, but sometimes it’s really tough.
Tawan is doing well now just over 6 months (Jan 2014) since being diagnosed. He’s impressively been back to work for 3 months. His current treatment (now at UCLA) consists of bi-weekly infusions, monthly doctor appointments and chemotherapy pills (for 5 days in a row each month), and bi-monthly MRIs. Each follow up MRI has shown slight improvement, which is very hopeful. We are hoping and praying that this trend continues. His next MRI is coming up this Wednesday (Jan. 15th). We are so grateful for what we have and pray for the strength to continue this difficult journey towards my husband’s full recovery. We call it Tawan’s BIG Recovery.