Ameloblastoma 01 (Drafted on 02/23/2019): Discovery

Our son, Elvis, was diagnosed of ameloblastoma on the left mandible (lower jaw) on 02/04/2019. He was 3 months past his 18th birthday when we found this out. A dark cloud looms above us, in his senior year of high school, and the college years ahead.

Why Blogging?

I pretty quickly came to the decision to blog our journey. To start, this is my way to reflect,  organize my thoughts, and leave a written record for our future reference. Our family lives a pretty private and quiet lifestyle, and are not exhibitionists by a long stretch. Later during research, I found we have benefited tremendously from other people's blogs. I can't image us going through the dark tunnel without learning from others. We want to contribute back to the community with these records, in any tiny way possible. Lastly, we want to keep our friends informed, of what is happening with our family. If you ask, "what can I help?"

• Please keep Elvis in your prayers, for the blessing to protect him through this difficult journey, and instill in him with wisdom and strength.

What is Ameloblastoma?

A rare benign tumor inflicting about 0.6 person/million each year (in comparison, 44 cases/million of cancer cases are diagnosed). It is locally aggressive, and has a high rate of recurrence if initial treatment is not thorough.

• It is a tumor, which means it continues to grow if left alone.
• It is benign, so it's not cancer. We feel so lucky it is not malignant. The rarity though, makes it more challenging to find doctors experienced in treating the disease.
• It is locally aggressive, and can cause a lot of damage (even life threatening) if not treated timely and thoroughly

Treatment comes down two basic approaches for Elvis:

• Conservative treatment is basically removing the tumor itself, has high recurrence rate anywhere between 50-90%. Recurrence can also turn malignant, and invading to other organs. Another problem with recurrence is, the tumor could be much more pervasive (and hard to treat) when detected since it may be more in the soft tissues instead bone with clear border. For these reasons, conservative treatment is typically conducted for young patients who are actively growing, and small tumors.
• The standard treatment involves resecting a portion of the jaw bone (anywhere between 5-10 cm), including the tumor and a safety margin (tooth 18, 19, and most likely 20 will be removed, plus about equal length of jaw bone from 17 backwards), followed by/in tandem with, reconstructive surgery. The reconstructive surgery involves taking bone from a donor site (hip or leg) and graft to the jaw. Once the grafted bone has healed and grown to the right volume, dental implants will be followed to make up for the removed teeth. 

What Have We Been Doing Since?

Research

The first thing I started was to google it, anything we could find. By the end of that week, I felt I was pretty much exhausted with research, and didn't think any more research would give us better clarity and direction. It was clear to me that, this is the biggest challenge our family has ever encountered (maybe even ever in the future). The research both educates us, but also helps us decide the treatment plan.

Reading Blogs

One part of the research is to figure out the typical patient experience. The doctors are very much focused on the medical aspect. We need testimonials of patient experience. By googling, we have found other patients, and their treatment lasting from months to years, with one year being the typical in the absence of complications. The variance primarily depends on complications post surgery, which is driven by the scale of the tumor and complexity of treatment, as well as the inherent uncertainty of such invasive surgeries. We took several blogs and began to summarize the extent of the tumor, the treatment method, what complications, duration of recovery, what went well for them, and tips.  We learn from others so we can be best prepared. We found the following blog entries very helpful

• Sandra: Taking My LifeBack: My BATTLE With AMELOBLASTOMA 
• Tina: Renewing Strength- My Journey with Ameloblastoma
• Laura: Amelo... what?
• Bailey’s Story
• Atxameloguy: Ameloblastoma: My Experience

The Revelation

Over the first 2 weeks, we also formulated the following principles going forward.

• We will not hide anything from Elvis, no matter how ugly the reality will be. He is pretty much an adult now, though a young one. It will not be fair for him not knowing the full extent of his health. Also, it is unlikely for him to make the most effective effort without adequately informed and educated.
• On the other hand, we will not overwhelm him. He needs to primarily focus on his school work, and other things he enjoys (like talking to friends, having fun together, running school clubs, video games...). Life must go on, despite of the tumor.
• We started the daily ritual at the dinner table of discussing what we have been doing that day, progress we are making, and plans. It is our daily standup.
• We would be absolutely open to each other of different opinions and views, and work through them. We felt our different views are the strength of our family, and this is the time we need all hands on deck. 
• We MUST enjoy  life, and continue doing the things we like, with more zest since our time is more squeezed. We will not  let ameloblastoma taking any more joy from our lives than absolutely necessary.

The Emotions

I never expected the emotions would be so strong. I didn't remember I was so emotionally moved when I lost my dad at 15. Later I lost 2 brothers (our siblings have always been very close) during the years, and I mourned the loss internally, not with tears. 

• Especially during the first week, my emotion was so raw. Everytime I talked with somebody, I would choke up. At one point, I just burst into tears.  I also broke into tears a few times at home. At the lunar new year, we continued our tradition of having dumplings. It took me several attempts to finish the sentence "you and mom means the world to me, and I hope we can have many, many, new years day with dumplings." The typical mundane days are the best.
• Sometimes, a tiny thing would trigger the emotion, such as saying a quiet prayer. I am not a particularly religious person, but feel more of the urge to pray these days, for the protection. By end of the 2nd week, I was finally able to sit down and play the piano (I started learning last September). There is one particular beautiful tune that is my favorite, and the beauty brought tears to my eyes. 
• I didn't know and still don't know why I was so emotional. I am not ashamed or embarrassed (though totally not characteristic of me) of the tears, but "not knowing why" frustrates me. I guess one of the reason is, it is very hard, as a father, to see his son going through the difficult journey. The aggressive treatment involves major surgery during a 1-2 year period with high risks. The first surgery itself will be a 10-12 hour process.  One friend at work said well "other people don't get it. Not that they don't try or want to, but because they are not where you are". I also knew I worried how the surgery and recovery and possible complications may affect his upcoming college life. I would give everything I have if a miracle can turn his tumor off -- but that option doesn't exist. This burden is too heavy and it wouldn't be good for me, for any long duration of time. 
• By late 2nd week, the emotion has quieted down a little bit, as we sorted out a plan of actions, and kept on working through them. 

Looking Forward

In the coming weeks, we will continue to work on the treatment planning and preparation. Future entries of this blog series will be brief, since we can't afford me taking a few hours writing blogs often. All entries will be tagged "ameloblastoma".

Please, keep Elvis in your prayers, please.