Ameloblastoma 03 (Drafted on 06/20/2019): Surgery and Recovery

We are home safely

The Surgery

We arrived and settled in on June 3rd, one day before the pre-op appointments. The trip was event-less, but there was the great suspense of what to expect.

The pre-op appointments, including a medical grade CT, pre-anesthesia appointment, and talking to the surgeon, went smoothly. The process made us feel "yep, we are doing this". The day after, we arrived at the hospital a little after 6 AM for the 8:30 AM surgery. Being first time in a hospital for surgery, we began to learn the terms such as prep, in ops, recovery, recovery II. We were with Elvis for quite a while in the prep room (with his gown on and even the IV started), until shortly before 8, when he was wheeled into the operations room, and we ushered back to the lounge.

The monitors in the lounge show the status of each patient (of course without any personally identifiable information). The staff give regular updates like "family of who, the procedure has begun..." The surgery was scheduled to finish at 10 AM or so, at that time we were informed everything was going fine, just took a little longer. The surgeon came out around 10:10'ish, and told us all went well.

Since Elvis was taking more time to wake up from anesthesia, we decided to have a quick lunch in the cafeteria. Around 2 PM, we were led to see Elvis in Recovery II -- swollen, ice pack around his jaws, gauze with blood in his mouth, and subdued. A few minutes later, the IV was done, and Elvis wanted to go pee. Called the nurse to take the IV out, and we helped him to the bathroom, then changed clothes, and were discharged. Of course, the nurse went through the discharge notes.

While we pulled the car to the front door, an staff wheeled Elvis out to the car.

The 4th day after surgery was a turning point -- nothing got worse and most symptoms were subsiding. On the June 17th visit, Elvis was pretty much back to normal. The stitches were taken out, and Elvis was re-affirmed to continue 4 more weeks of soft diet.

We had very good experience with the hospital. All the staff were super friendly, and the surgeon and his team are phenomenal.

Diagnosis

We were told that it would take 24 hours after the surgery to know the biopsy results. As you may remember, the exact type of Ameloblastoma is unknown until the whole tumor is removed, so the pathologist can examine the whole thing. We decided not to call ahead to find out. I think both good and bad news can wait, and we should focus on taking care of Elvis. Hui was more afraid of any possible bad news.

When we visited the doctor on June 10th for the follow-up, we were tremendously relieved to learn the final diagnosis: Unicystic Ameloblastoma -- the sub-type with least likelihood of recurrence. While nothing is guaranteed, the diagnosis is the best we have hoped for. The conservative treatment seems to be all that is needed.

Looking forward

Elvis should be back to normal diet and activities by end of July, as long as he follows the proper directions and avoids any accidental injury. Then 6 months later we will have another follow up, and most likely annually afterwards.

Emotions

Hui commented that the trip felt shorter returning home. It makes sense. When we went there, we didn't know what to expect, of anything. After the surgery, the weight of the biopsy results grabbed the central stage in our mind (though it never left our thought before). But after  knowing the diagnosis, and seeing Elvis recovering very smoothly, we traveled back light.

While in the Doctor's office on the 17th, we realized it was the same room we were in, 3 months (plus 1 day) ago for the initial consultation. At that time, we were so much worried, confused by the wide possibilities of unknowns and ramifications. The doctor's experience, rigorous approach, and conviction in long-term cure of the patient with minimum interruption, gave us confidence, hope and clarity. 3 months later, we are ready to call it done. It is a great relief.

Thank YOU for your help

Many times we feel so blessed, for the help we are getting from all of you.

• Many of you pray for Elvis, and our family
• Your thoughtful inquires of how things are going
• Cards and messages
• Kind thoughts and blessings
• The medical professionals. Though we must decide a single doctor at the end, all the doctors were very sincere, patient, in answering our questions during lengthy consultation sessions; and helped us learn the disease, the treatment options, and finally narrowing down an approach.  They paved the stones along the path for us. We are very grateful.
• Most importantly, we are very thankful for the surgeon's phenomenal expertise and professional integrity.

The After Note

The journey over the past 4 months does teach us something. Life throws all sort of things to you, often least expected. I keep on reminding ourselves, "life is not defined by these incidents, but by how we handle them." Like Hui said "treasure every minute, every second with the family." We hope our story can give you more hope for any struggle you may be in. And, we root for the best for you.

Many thanks.

Ameloblastoma 02 (Drafted on 04/04/2019): Search for Cure

First, thank you all for your support.

So what have we been up to over the past 6 or 7 weeks? We have been seeing specialists, both in the St. Louis area and the region, in the search for the best treatment.

What Experts to See?

Since Ameloblastoma is a rare disease, finding doctors experienced in the treatment takes some work. My employer has contract with Consumer Medical, which I engaged early. A nurse was assigned to our case (they call the "ally"), who actually would research on the disease, consult with their doctors, and come up with a list of providers. They provided some research articles electronically, and sent us physical copies of the articles, which are much more friendly to my eyes. The doctor list is a good starting point. Our regular dentist has been very eager to help. Of course, there is always google.

Then I thought, the insurance company must know, and answer the question like "what are the top 5 institutions treating this disease?" It turned out the insurance company can't answer the apparently simple question.

As I started calling the doctors, some of them just don't treat the disease. But I learned to ask the question "who would you recommend?" As the list got groomed, we began to make appointments.

Expert Opinions

The vast majority of the doctors we saw have been very good. Every time we walk out the office, we felt we learned more about the disease and treatments. No matter how much I read or google, that is not the same as talking to a medical professional. We felt very lucky and are very grateful for getting help from these experts. One of the confusion is what kind of specialist to see, there are the OMFS (oral maxillofacial surgeon) and ENT (otolaryngologist). It took some phone calls and a few visits for us to know that often the OMFS focuses on the treatment of the tumor, and an ENT will focus on reconstruction.

Of course, we developed the list of questions, and adapted them for the doctor visits. We also took notes, to compare and put in the computer for later reference.

The experts have different opinions based on experience, believes and assessment of the situation. Initially we were somewhat baffled by the diverse views, but later got better understanding.

• The most important factor driving the treatment approach is diagnosis from the biopsy. The biopsy report is ambiguously stated "this can be considered, ..., but can't rule out ..that". We learned the ambiguity is due to the biopsy being a part, not the whole tumor.  Therefore the discomforting realization -- the tumor is at least as severe as what the pathologist saw.
• Based on the ambiguous diagnosis from incomplete information, the doctor had to make a decision and recommendation.
• In addition, specifics can differ for the same general approach. For example, there is the bone grafting using hip vs. fibular bone vs cadaver bone vs BMP.

At the end, there is no consensus. And, we arrived at the point -- ok, now how do we decide?

The Decision

Our goal was to make a decision by April 1st, an arbitrary date since by then we would have visited all the doctors. It took us a few more days, so we can noodle on the options. One helpful tool is the comparison chart on a whiteboard at the family room.

• 3 rows: Unicystic Ameloblastoma, Solid Ameloblastoma, and Questions
• One column for each treatment
• For each treatment, we note down the advantage (with green sticky notes), risk (red) and possible mitigation (yellow), and simple facts (white).

The idea is to identity a treatment with the least amount of risk that can't be mitigated. 

The key lesson we learned during this process is the importance of seeking multiple opinions, since this is not a common simple disease with singular treatment. Part of the process is also seeking additional pathologist reviews (they call it "look at the slides"), since different pathologist can have different conclusions.

Emotions

We are all much calm now. Part of the reason is, most doctors confirmed there is no need to rush, and we can do the surgery in late May or early June. The time allowed Elvis to finish high school, and take the summer for treatment and recovery.

Also comforting to us are the helps from friends. The encouraging words and wisdom help us more than you know.

Next Steps

The surgery is scheduled for early June, so Elvis can recover during the summer, and be ready for college in the fall.

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.