Bettina Johnson

On Saturday, April 25th  2015 the family was enjoying a very special time, my sister Althea's Baby Shower. Friends and family came from all over to visit and we are very excited to meet Althea's baby in short of just 2 months away! 

Later that night, however, my mom took a fall and was taken to the hospital. After doing x-rays they determined that she fractured her right greater tochanter bone in her hip. The way it fractured was unusual and so they ran some tests, such as a CAT scan to determine more. We were grateful that they were running a CAT scan because about a month ago my mom lost her voice and after seeing an Ear, Nose and Throat specialist-they determined that her left vocal cord was paralyzed. A CAT scan was already scheduled for Tuesday, April 28th so the doctors decided to scan her hip, abdomen, and throat all at once. This was a blessing in disguise because it determined that cancer was actually causing my mom's hip pain and trouble with her voice. 

It was early Sunday morning when my dad called to tell my sisters and I that mom was in the hospital. We rushed to the hospital first thing, but it seemed all too familiar from about 13 years ago. As some of you may or may not know my mom and sister Althea were in a serious car accident in 2002. Bettina was driving along Route 15, bringing Althea home from a doctor's appointment, when a driver speeding on the wrong side of the road hit my mom's car head-on. My mom was in the hospital for weeks, fighting for her life. I was about 14 years old at the time, and was kept out of a lot of the details in order to protect me from the severity. It wasn't until 2 weeks after the accident I was able to see my mom, but shortly after that time period hospital visits became a usual routine. My mom was on the road to recovery with multiple fractures and other complications but the doctors said she should make a near full recovery. However, when she was in rehabilitation she suffered a stroke. It was misdiagnosed at first  and they didn't catch it in time to reverse the damage quickly enough. The stroke was caused by internal bleeding from the injuries. She was then again, back in the hospital, trying to relearn basic functions such as talking and walking.

It has now been about 13 years since the accident. My mom never did make a 100% recovery. Her left eye is permanently crossed, she can no longer smell or taste, and has numbness in her right arm. One thing about my mom though is that she never gave up or lost hope. She remained optimistic through out and has always been an inspiration to me and everyone around her. At the time of the accident she was completing her Bachelors Degree in social work. She was just a class shy away from getting her degree when the accident happened and post accident she attempted to finish the class. Her professor even offered to come to our home to help her. However, due to the stroke it was deemed too difficult to complete. The point is that she tried and it is better worth trying than giving up. My mom is not one to give up and has always been a positive light in my life and many others.

With that being said, when we learned of the fracture we thought it could be from arthritis or other complications due to previous injuries from the car accident. Unfortunately this was not the case and we now know the fracture was caused by cancer.  From the CAT scan they also found a mass in her left lung as well as lesions in both lungs, adrenal gland, and kidneys. There were also several lesions around the femur where the fracture was. They said the "lesions" were neoplastic cells, basically meaning unusual cells, most likely cancerous, but they could not yet determine what kind of cell tissue or where it was coming from. This could also explain why my mom's voice is hoarse, there are nerves in the lungs that are connected to the vocal cords. They scheduled my mom for surgery Monday afternoon in order to treat the fracture and take tissue of the bone to do a biopsy. The surgery was successful, they inserted a rod through the femur in order to relieve the stress of the fracture and enable my mom to bear weight on her leg. They said she would be able to walk the next day and within a few days be able to come home from the hospital. During the surgery they found a tumor around the fracture and were able to take tissue samples to be analyzed. 

We are now in the process of waiting to hear the results from the biopsy. It has already been ruled out that the lesions are not infections and it is cancer, but we do not know what kind. 

My mom is recovering from the surgery and the doctors think she will be able to come home soon. As usual, she has a perpetual smile on her face and more than welcomes the many visitors she receives. Last night we celebrated my 27th birthday in the hospital room and I couldn't be more grateful for my amazing family and for having a mom that knows how to live life to the fullest and has always appreciated every little moment and all the little things life has to offer. 

We thank friends and family for your continued support and the amazing community that has helped without any hesitation. Please continue to pray and send positive vibes to my mom and our family.

Love,

Cecelia and the Johnson family

UPDATE: The diagnosis is stage IV non-smokers lung cancer. Here is an excerpt from the journal entry by Neena back in 2015, 19 days after Bettina fell on April 25, 2015:

TEST RESULTS: Journal entry by Neena Johnson — 5/14/2015 On behalf of the Johnson family, I want to thank you all for your continuing support.  Your loving thoughts and actions have helped us tremendously through this difficult time. Over the past two days we have had many of our questions answered about……..

Bettina has been diagnosed with stage IV non-small cell lung cancer. The biopsy results confirmed that the cancer originated in the lungs and we know that the cancer is stage IV because it has traveled to other parts of her body, including her bones.  Lung cancer is one of the most common types of cancer among women, regardless of an individual’s history with smoking (Bettina is a non-smoker).  Of the two classes of lung cancer (non-small cell and small cell), non-small cell lung cancer occurs in about 80% of lung cancer patients.  Within the class of non-small cell lung cancer, Bettina has adenocarcinoma lung cancer.  With further tests, the pathologists were able to determine that Bettina’s cancer is the result of a mutation to the Epidermal Growth Factor Receptor (EGFR).  Dr. Ban-Hoefen explained that within a cell, EGFR acts like a switch.  When ‘on’, the cell continues to divide and when ‘off’, the cell does not divide.  In normal cells, this switch is regulated and turns on and off as needed. A cell becomes cancerous when a mutation causes EGFR to be switched continuously ‘on,’ resulting in proliferation of that cell and what we know as tumors. 

Dr. Ban-Hoefen was very glad to inform us that Bettina’s cancer is the result of an EGFR mutation because this type of cancer is not treated with chemotherapy, but rather with a pill called Tarceva. The pill has less side effects than chemo and is taken orally once a day. Tarceva is what doctors refer to as the new generation of cancer treatment. Tarceva is a ‘targeted therapy’ that specifically targets the EGFR mutation in the cancerous cells.  In patients taking Tarceva, there is a 70-80% chance that there will be a reduction in cancerous cells throughout the body.  Tarceva has only been on the market for 4 years, but it is a remarkable improvement to previous treatments of adenocarcinoma lung cancer.  Four years ago, a patient diagnosed with adenocarcinoma lung cancer would have a life expectancy of 5-6 months with chemotherapy having a 20% success rate in reducing tumor size.  Tarceva works in 70-80% of patients and increases life expectancy from months to years.  We feel incredibly grateful for this news.  It brings our family so much hope for the future. 

UPDATE: July 2nd, 2017, 2 years and 7 weeks since Neena's post when we learned Bettina’s diagnosis.  Tarceva worked for several months until the side effects made it intolerable.  She went through two more non-chemo drugs which like the Tarceva worked great at holding back the cancer growth but then each drug in stride would induce side effects that made them intolerable.  She then went through 5 months of chemo which had immediate and very strong side effects with each infusion every 3 weeks and she would only feel better for a few days just before the next chemo and the horrible side effects all over again.  

In my post 17 days ago titled 'WHEN LIFE HANDS YOU A LEMON' I tell of Bettina’s incredible determination since receiving the devastating diagnosis just over 2 years ago and to spend as much time as possible with all those she loves.   I also tell of Bettina’s most difficult decision she has ever had to make and of her character and strength that is so incredibly inspiring.


September 7, 2017, Bettina passed away today.  Please see the posts from that time and beyond.  It's the story of Bettina's never ending spirit.

Love,
Greg