THE STORY OF Chase Lock and Lock Boxes of Love

Chase Marc Lock was born on February 7th, 2008.  Mommy, Daddy and big sister Emma immediately fell in love and our family finally felt complete.  Chase was an energetic and happy baby boy who loved the Wiggles and planes trains and automobiles.  On October 10th, 2010, when Chase was only 2 1/2 years old, our lives changed forever.  Chase and mommy were sleeping in bed together when Chase fell out of bed and hit his head on the wood floor. Mommy quickly checked him over and he appeared okay, and after a few hugs and kisses, back to sleep we went.  An hour later Chase awoke and began vomiting.  I was afraid he may have a concussion so I rushed him to the hospital.   After an initial CT scan 2 doctors and 2 nurses walked in the examination room to report the news.  The look on their faces suggested that something was terribly wrong.  What they said was that Chase had a very large mass in his brain and they had paged a neurosurgeon to review.  At this time I immediately felt my legs go numb,  Looking at the doctors and the nurses I began begging them to tell me that Chase would be okay.  They looked at me sadly and said “we are going to do the best we can”.

I called Marc in the early morning hours of  October 11th 2010,  Mare said I was screaming and he could not understand a word I was saying, but he knew he needed to get to the hospital quickly. He scooped up Emma and when he arrived the neurosurgeon came in to talk with us. He said that he would need to run an MRI to truly see what was going on, but he was concerned about what appeared to be something in Chase’s brain.  After Chase’s MRI was complete, we sat waiting for the results, and each second that ticked by on the clock in the room sounded like the crash of a drum. These seconds and minutes were grueling, tortuous, and horrifying. Finally, the doctor walked in and sat at the edge of the bed, he told us that unfortunately it was a tumor he saw and that Chase would require immediate brain surgery.  As we sat soaking in the news we tried to think about how we could get the “best” care for Chase.  Thinking about our boy requiring brain surgery at his tender young age was dizzying, impossible to comprehend, and surreal.  After the help of friends, God led us to the Barrow Neruosurgical Center in Phoenix,  Az.  We were transferred  via ambulance to The Barrow the very next day.  Dr Kris Smith,  of Barrow Neuosurgical and associates, had a conversation with Marc to “get up to speed” on what to expect, and was waiting for us when we arrived.  He met us with an air of confidence, compassion, and genuine concern. He spent time with us reviewing what he saw in the scans and then delivered the news.  It appeared that Chase had a very rare cancer of the choroid plexus; the tissue within the ventricles that produces the cerebral spinal fluid which nourishes the brain and spine.  The tumor appeared quite large and had to be removed quickly.  He set us up with a time the very next morning.  Marc and I spent the night holding Chase close and telling him how much we loved him, and above all, we prayed.  We prayed that God would hold him when we could not and we prayed that Chase would be okay.  The next morning was extremely difficult. We kissed our beautiful Chase on the head and cried as they wheeled our little angel away and into surgery.  Hour after hour ticked by, and finally, after what seemed like a lifetime of waiting,  Dr. Smith came out to give us the report.  He began by telling us that Chase had done very well during surgery and was in recovery… then he paused, his face looked concerned and a little saddened. He looked at us and continued. He told us that unfortunately Chase’s tumor was in fact a very rare and aggressive tumor of the choroid plexus, and unfortunately, Chase’s was a carcinoma. MALIGNANT. I fell to my knees and sobbed uncontrollably..  Our son, whom we love so much, apparently would now be in a fight for his life. A fight against cancer. A fight against this very rare and aggressive beast.  We did not have much time to absorb the news before we were introduced to a pediatric chemotherapy oncologist as well as a radiation oncologist. Both would repeat to us the severity of what we were up against and began immediately discussing treatment options. It was extremely difficult to focus during this time, but Marc and I both knew this was critical and we had to find the strength to move forward and be strong for both Chase and our dear princess Emma.  Within just a few weeks, after Chase underwent brain surgery, he had another surgery to implant a portacath into his chest. This is how they would begin administering chemotherapy to his little body. Chase would undergo 5 consecutive months of high dose “I.C.E” protocol chemotherapy.  His hair began to fall out, he had a number of adverse side effects, his body ached, and his blood counts would plunge and then recover a bit, only to plummet again. He required a total of 4 blood transfusions during his chemotherapy treatment.  Our family, including big sister Emma, who at the time was 4, would travel back and forth to Phoenix for doctors appointments and chemotherapy treatments.  We spent Halloween, Thanksgiving, Christmas, New Years and Valentines day in the hospital or in isolation. It just didn’t seem right and our hearts ached relentlessly for our precious son and for Emma, who was in this journey with us.  In February of 2011 Chase turned 3, and had completed all 5 months of chemotherapy. Treatment protocols for this rare cancer vary widely and must be watched and monitored for each patient.

We were at a crossroads on whether to try more chemotherapy, move on to radiotherapy, pull back and do nothing, etc. etc. Treatment options varied as we had conversations with our neurosurgical team, pediatric oncologist, radiation oncologist, MD Anderson, St Jude and Boston Children’s. Our pediatric oncologist believed that Chase could not tolerate any more chemotherapy at this time,  After much consideration our family decided to move to Houston in order to take Chase to Md. Anderson for proton beam radiation therapy.  We moved into an apartment and lived in Houston for 2 1/2 months while Chase received his radiation treatment under the excellent care of Dr. Anita Mahajan.  Chase had to fast and be sedated every day to receive his treatments. Of course, our beautiful, strong, and loving Emma was there every step of the way, holding Chase’s hand and making him smile.  In May 2011 Chase finished his final radiation treatment and we headed back to Tucson.  We had to return to Texas 30 days later for his first post-radiation scans and review.  It was after this visit, as we landed back in Tucson, that we were immediately contacted by the Doctors to inform us that his right temporal horn appeared to be entrapped and he may require additional brain surgery to fenistrate ventricle tissue in order to relieve the pressure buildup.  We immediately forwarded copies of the brain scans to our neurosurgeon at The Barrow and waited. We were contacted immediately by his office suggesting that we needed to get to see him immediately. We were back in Phoenix a few days later visiting with Dr. Smith.  Dr. Smith reviewed the scans with us and explained that this situation had the potential of progressing from fine to fatal within 24 hours.  He needed to go back in and try to fix the problem. The surgery was scheduled and I do not think Marc or I slept at all waiting for the surgery. We had to watch Chase very closely for any symptoms that would require immediate emergency surgery.  The day for surgery finally arrived and again we kissed our baby goodbye and put him in the arms of Dr.  Smith.  Once again we watched as our precious little boy was taken away for another very serious brain surgery. Chase did well during his surgery, but the doctor did explain that we would have to watch Chase closely because his temporal horn does run the risk of again becoming entrapped. Today our family continues to travel back and forth to Houston every 60 days, for now indefinitely, so that Chase can receive brain scans, spinal scans, spinal lumbar punctures, meetings with the neuro oncologists, audiologists, and neuro cognitive doctors. This ugly cancer typically comes back and we must be vigilant in our monitoring efforts to make sure Chase is ok.  We believe that Chase is not going to part of the devastating statics that surround this type of cancer, instead we know that he WILL win this fight. Despite all that Chase has been through, he smiles and fights valiantly. He proudly asks “Do I have another appointment today”? And if the answer is yes, he simply looks down and says “OK”.  He endures chest pokes to access his port, sticks in his arm for blood,  surgeries, feeling sick and yucky, the loss of many activities he would otherwise have been able to participate in, yet he laughs, he jokes, he teases, he plays and runs hard, he loves hard, he follows his sister around to be a part of her life. Chase has done remarkably well. Chase is strong. Chase is the most loving compassionate little guy. He is truly a one of a kind.  The only side effects from Chase’s surgery and treatments were the loss of his left peripheral vision in both eyes, and doctors believe he may have slight hearing loss in both ears.  Besides that he is an energetic, amazing, and silly little boy.

June, 2013

We took Chase to the oncologist because we noticed a few things going on with Chase that we felt may be post chemotherapy related side effects.  The oncologist decided to run a few tests such as a PET scan and an MRI.  Then we played the painful waiting game.  One day while driving the kids to a play date I received a call from the neuro surgeon and the moment I heard his voice my heart sank. In the 3 years that we have worked with him he has never called us directly.  Usually his nurse or office staff will call us, so I immediately knew something was wrong.  It is hard to remember his exact words because in those few moments my hands and feet fell numb and my world crashed.  He told me that he was sorry but that there appeared to be a new tumor growing and we needed to get in for an appointment to talk about surgery.  I could no longer hold it together, I crumbled, I weeped, and I a piece of my heart died that day.

The following weeks Chase and our family traveled from Tucson to Phoenix and up to Los Angeles trying to seek out “The best of the best” to help us come up with a treatment plan for Chase.  Chase’s tumor was in a difficult location close to the pituitary gland so it was essential that the surgery went well.  In July 2013 we once again gave our little man a kiss and left him in the hands of our surgeon.  About 5 hours later the surgeon came out for a consult and he said that Chase was doing well post surgery but the preliminary pathology indicates that the tumor was recurrent CPC.  Those were not the words we hoped for but we tried to keep it together so that we could focus on a plan of action.

Chase will undergo 3 rounds of high dose chemo followed by 3 doses of bone marrow depleting chemo and a stem cell transplant.  This treatment will be long and grueling for Chase and we are looking and praying for a miracle. Please continue to pray for Chase.

Lock Boxes of Love

Chase’s sister Emma is only 15 months older than Chase and her life was turned upside down when Chase was diagnosed.  She was only 4 when Chase received his diagnosis.  She was taken out of school and traveled for a year for Chase’s treatment.  She loved him and took care of him every step of the way.  There were many days that Chase would not want to get out of bed but Emma would encourage him to get up and play when nobody else could.  During that time Chase received many care packages and gifts and Emma would stand by and watch and wonder “why didn’t I get a special package”.  When we returned from Chase’s 1st year of treatment Emma went right to work.  She went through all of her toys in her toy boxes and began to ask me to send them to other siblings that had a brother or sister fighting cancer.  She wanted them to feel special too.  That is when Lock Boxes of Love was born.  We began collecting toys for those special siblings and started our non-profit organization.  Lock Boxes of Love is now in full swing servicing siblings of cancer patients all over the U.S.