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My Story

Life's a journey with bumpy roads and all. Luckily, God has a plan for us! Hopefully this site will give you updates and information about my journey and recent diagnosis with Chordoma - a rare form of cancer.

So, welcome to my site where despite the latest bump in my road, "Alicia Smiles." To everyone who visits this site, please read with a faith-filled and joyful heart.



By the time I hit 20 I had a myriad of aches and pains; especially in the lower back. We attributed everything to the yrs of pounding on my bones and joints with gymnastics. Plus, I probably needed to drink more milk! Come to find out there was a different reason all together.

During work in 2004, I started to have an excruciating headache. My physician referred me to a Neurologist just to make sure that nothing out of the ordinary was going on. The doctor revealed that my brain function was normal (some of my friends may disagree). We expected to go home and make sure I relaxed at work instead of hosting all of my stress in my neck and shoulders that led to the tension headache. Instead, the Neurologist pointed out 2 tumors in the Lumbar region of my back called Neurofibromas. He took scans lower because I had also complained of low back pain.

We were then sent to a Neurofibromatosis specialist to confirm the diagnosis. After a clinical evaluation, the doctor agreed. After researching everything we felt that other than a little extra back pain, the tumors were benign and life went on.

Fast forward to 2006-the back pain from the Lumbar tumors began to be more and more painful. I couldn't do as much as I wanted. Removal was not an option because of their placement. I learned through talking with the doctor that an "excision" of the tumors would include removing the nerves that connect that part of my back to my legs and in the end would affect the mobility of my right leg. That thought at age 25 wasn't anything I wanted. Instead I received epidural injections to try and numb the nerves causing the pain.

It worked! Only with increased activity or a long day on my feet does my back really ache in that area. Now getting these injections wasn't exactly fun, but well worth it.

After 6 months I began having pain around the tailbone area which is very near to the injection sites so I went back to the pain clinic twice with the complaint and they kept telling me that it was not related. I thought they were crazy.

In 2007 I noticed it was even more uncomfortable to sit in a chair. I was constantly shifting my weight. In early 2008 I decided to visit my original Neurologist since I hadn't seen him since my diagnosis in 2004 just to let him know what was going on. After a series of MRIs and other testing and an in-person visit, my doctor felt that there was another small mass in the tailbone area. He was actually able to feel it himself so he knew something was there.

From my neurologist, I was referred to a General Surgeon to take a look and confirm that there was a mass there that could easily be removed and solve my problem of discomfort while sitting. The surgeon agreed that based on my past history with NF and the location, it would be fine to remove it.

So, on March 25th 2008, the mass was removed with no problems. The surgeon confirmed that it seemed to be a normal neurofibroma. The incision was about two inches long and after about two weeks I was healed and ready to go back to work. My post op appointment to remove the stitches was April 2nd (the day before my 28th birthday and first day back to work). It seemed that the incision was healing well and each day I was able to do a little more so we were happy with the results. Before we left, the surgeon brought in a pathology report. The mass was not a neurofibroma, but instead chordoma. The surgeon explained that a CHORDOMA diagnosis is a malignant tumor that originates in the bone primarily of the spinal cord; a form of bone cancer.

At first we just listened, but shock set in and I couldn't contain the tears. Nothing would have ever prepared me for a moment to hear that news. The surgeon referred us to a Radiology Oncologist. His initial thought was that I would receive radiation therapy.

My mom went into supermom action and started researching many things about this chordoma. Googling not recommended but I think we all did it. My mom also put the message out to my Uncle who worked many years at Harvard and who may have some colleagues that could lend some advice. Low and behold, within 48 hours we had a contact at one of the premier cancer institutes in the country; the Dana-Farber Cancer Institute in Boston. The Executive Director of the facility responded to my mom's email within 5 mins of receiving it and let her know that they have a research team familiar with this type of cancer who would be very happy to assist us in anyway.

Today I am being treated at Massachusetts General Hospital for Chordoma in the base of the head, lumbar and coccyx with surgery and Proton Radiation. As you can see, they found three primary sites of chordoma along my spine (basically from top to bottom).  I've had 5 successful surgeries to remove the cancer.  Today, the journey continues...


Journal

Notifications

Mar 20, 2012 6:28pm

Joyful exhaustion has kept me away from these journal updates since my last post back in August where I was happy to report that we were expecting our first children ... and they would be twins!

Our little bundles arrived on Thursday, January 26th, 2012 at 7:51pm and 7:52pm.  Of course the journey of their arrival was not without its challenges but makes the blessing that much greater to us.

Around 23 weeks I was threatened with pre-term labor ... not uncommon with twins, but scary nonetheless as the little ones were no where near ready to arrive.  I was admitted overnight in the hospital for monitoring of the contractions and once stable, was able to return home to rest.  I returned to work for about a week, but at 25 weeks found myself back in labor and delivery for slight contractions.

Starting at 25 weeks I was given steroid injections to progress the maturity of the twins lungs in case they came early and was also again sent home but this time to strict bed rest (meaning only out of bed for the bathroom and five minute showers ... this also meant laying in bed, not even sitting) ... little did I know that I'd be on bed rest until the twins arrived ... I must say that bed rest during my cancer treatments was much different as I was heavily medicated and able to sleep A LOT.  But with a giant twin belly, heartburn and overall discomfort ... there was not much rest on "Bed Rest" for me.  That being said, with all of the surgeries on my back, it probably was best that I was not carrying around all that extra weight for the duration.

Through out the pregnancy we were closely monitored by wonderful doctors and were able to see our babies weekly via ultrasound ...  that was the only good thing about being a high-risk pregnancy patient.

For the third time, around 32 weeks, we were sent to labor and delivery for monitoring of contractions and again received the last and final round of steroid injections to help the twins lungs ... they could have arrived at any time after that point.

Every day I thanked God for the additional day He gave us ... and prayed that we be blessed with the following.  To everyone's surprise I carried our twins to 36 weeks and 4 days ... almost full term for twins (37 weeks) ... longer than most expected.  But I know the faithful believed all along that these little blessings would arrive happy and healthy.

Neither twin needed NICU time ... not even our little peanut Kaia born at 4lbs 12oz.  Her sister Mikayla took up most of the space at 6lbs 1oz. Sitting alone in the quiet of our hospital room, Darrell and I saw first hand the miracles of life God had given us. After many years of struggle and fear, He was faithful to us and the evidence is in these two little girls next to me. 

We gave our children names that have great meaning to us ...

Mikayla means "Who is like God" and her middle name is Grace (named after my grandmother who was named that because she was born on a Sunday).

Kaia (pronounced Ky-a) means "Pure" and her middle name is Joy ... what we believe she will bring to our lives : )

So we find ourselves about four years after my diagnosis with cancer and about 18 months past my last radiation treatment in full out VICTORY ... times two.  

Now a new an amazing journey begins for us ... parenthood!  But with our amazing God on our side, We Shall Overcome 3am feedings and 20 diapers a day (between the two of them).

I will probably return to Boston within the next year to have my follow up oncology appointment. Those will go on for the next 5 years, but we plan for them to be uneventful with good reports that I remain cancer free so I can continue to be a mommy to my little angels.

So we joyfully announce the arrival of our baby girls and wanted to thank everyone for their time, prayers, meals, and love through out my pregnancy. It all has helped to usher these new lives into this world.

Be blessed and be happy.

Many Smiles,  
Darrell, Alicia, Mikayla, Kaia and Hero : )


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