How we got where we are today.

I just want to thank you for giving your time to listen to our story and to understand what our family and my twins have been going through so that maybe this can have an impact on somebody else and maybe help them with their future illnesses that they may have. This is a journey of their health and wellness, spiritual needs and everything else that will come along the way. I will be posting quite frequently, giving updates on the boys and what’s going on in their daily lives as they endure their battle with what’s called “cirrhosis of the liver” from a genetic mutation that they found. The cirrhosis is not from the commonly known factors that would typically cause cirrhosis of the liver.  This is strictly from the a mutated gene found in the boy’s DNA during its splitting, and somehow this gene is believed to have caused several symptoms and issues, and we are still trying to work all of that out.

Nicholas and Devin were born October 20th, 1999 as healthy identical twin boys, who were beautiful baby boys.  They were a blessing to me when I found out during the ultrasound that I was going to have twins, as my mother has also had twins, so don’t necessarily believe in the myth that it skips a generation cuz it doesn’t!  Haha.

Through the years they have been healthy for the most part besides getting head colds and strep throat and common childhood illnesses that kids get. The diagnosis of the cirrhosis bagan when Nicholas called me from school complaining of his hamstring burning so bad that he could hardly sit in his school desk. He complained about it throughout that night, and I told him it may be just growing pains as my boys were growing inches like crazy.   Now they’re 5’10”!  As we brushed it off as maybe being just growing pains, the following day he called me again in tears and that it was so severe he couldn’t stand it any longer. I left work and brought him to the emergency room . The ER Doctor ran blood work and saw that he had platelets that were really low, but he didn’t understand if that was a correlation with the hamstring burning.  We were then referred to see a Hema-Oncologist at Children’s Hospital for follow-up. You can imagine the scare that I had when I had a doctor tell me to see a Hema-Oncologist.  I instantly thought blood cancer.  I had no idea that that would eventually become a reality.

Through numerous visits to Children seeing different specialist, we were referred to a liver doctor at Ochsner.  Both Nicholas and Devin were scheduled for an ultrasound of the abdomen and that is when they saw some problems with the liver being small and nodular. Following the ultrasound they did a cat-scan and saw more extensive issues and decided to set them up for a liver biopsy.   Both boys went in to have this liver biopsy in March 2017, and were found to have severe scar tissue on the liver, followed by the cirrhosis of the liver diagnosis.

It has been brought to mind that this has been occurring for a long period of time because it takes a long time for the liver to get scarred, but this was something that we didn’t even know was happening. All of this was brought about just by Nick having blood work done due to the burning in his hamstrings. Something that could have been totally unrelated. So from there they were scheduled every two months for blood work, keeping an eye on their liver enzymes and regular routine blood work like Whole Blood Count to check the numbers and keep up with that.

Everything was going good until one night Nick came in from work, where he was working a part-time job at Sonic after school, and he came in bent over in excruciating pain.  I knew something was wrong and rushed him to the ER.  They did a cat-scan and blood work, eased his pain, and felt it was best that he get transferred to Oschner in Jefferson where his liver doctors were so that they can follow up his care. From there he was admitted for one week to observe, run test after test, and try to find what was causing his abdomen to be in excruciating pain.  After another ultrasound and an MRI, they found suspicious lesions on his liver that had grown and decided to do another liver biopsy.

I will never forget August 31st, 2017, when I was told that Nick was diagnosed with Angiosarcoma,  cancer of the inner lining of the blood vessels.  A very rare, incurable, aggressive cancer that formed in his liver.   I felt like my whole world had changed in that moment. So many questions were rushing through my mind and I didn’t know the severity of what he had but all I knew is that my son, a healthy young twin boy, now is battling cancer on top of cirrhosis of the liver.  What do I do now?  How do I accept this?  Why God, why?  All of these questions and so many others flew through my mind.  From feeling angry.  To bitterness.  Why him?  I cried and cried and it was all I could do to not collapse to my knees-completely overtaken with emotion.  But I knew I had to hold strong for my son, even as hard as that is.  To have all of your emotions bottled up but to hold back sharing it with your son, hoping to show strength and reassurance.  Hoping to show him this isn’t the end, other’s receive harder news to handle all of the time.  That everything will be okay, but deep in my heart, I knew it was bad.   Nick is now sitting there in the hospital bed, after being hospitalized for a full week, having a biopsy, undergoing test after test, probe after probe, doctor after doctor.  Observations, conversations, and now results that sent his world crashing in on him.  A High School Senior with a multitude of possibilities ahead.  I remember the doctor walking in and explaining to the family the type of cancer that he has and told Nick, “Nick, what is it that you want to do right now in the near future?”  And Nick said, “I want to walk across that stage and graduate.” The doctor then said that he would see to it that that happens as best as possible.  It’s sometimes little things like that that mean the most to someone that was just given a terminal disease and a death sentence. I cannot even imagine what was running through my 17 year old’s mind at that time.  But I do know that as a mother, I have to give these boys strength, give them hope and give them courage to overcome.  I have always been the strength in the family and the boys continues to expect me to be that way. I am their Rock and as Nick told me the other day, I am his best friend..

Thank you all for following along on our journey of trials, truth and triumph.  We are going to stand and fight, and we know God is with us every step of the way.

 

-Margi

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