Parish Newsletter Piece

I had a small article published in my church's quarterly newsletter-

As some of you know, I had Askin’s tumor (cancer) of the spine-three times over the past 9 years. Prayer has had a monumental part. More importantly, Blessed Chaminade has been an integral part of my healing. Blessed Chaminade’s life and mission have been inspiring to my family and me. The church as a whole and specifically our parish have been amazing in my journey.

The year was 1998 and I was a 15-year-old sophomore in high school. One morning my legs felt numb and my chest was losing feeling too. The doctors found an egg-sized tumor around the upper section of my spinal cord. After emergency surgery, feeling was regained and I suffered no paralysis. I was diagnosed with Askin’s Tumor-a very aggressive, rare and relatively unknown type of sarcoma cancer, found in only 3 to 30 people each year. My oncologist, Dr. Bergamini, became the first miracle in my whole experience. Then came the fact that I did not die that weekend, which was a real possibility. A year of chemotherapy began and 6 weeks of radiation. During this, this parish was the backbone of my family and helped with countless things-meals, visits, prayers, gifts, you name it.

The year of 2000 I was chosen by our church to go to Rome, Italy for the beautification ceremony of Blessed Chaminade, founder of the Marianist community of priests and brothers. He was beautified after a South American woman prayed to him and was miraculously cured of her lung cancer. I prayed to God and Blessed Chaminade for a healthy life. This began my deep connection with Blessed Chaminade. I still remember praying while standing and looking up at the beautifully lit Trevi Fountain.

In December of 2000, cancer cells were discovered again in my bone marrow. For the next 5 months, I was more in than out of the hospital but somehow graduated on time. Healthy cells were taken in May of 2001 to prepare for my stem cell transplant. A stem cell transplant works by successfully killing a person’s entire immune system and bringing the person as close to death as possible. A few days later a syringe puts the previously frozen stem cells into an IV in order to hopefully grow a new healthy immune system. I had some very severe reactions but surpassed all odds and pulled through. Later on, doctors have told me I am one of the sickest kids they have ever seen that did not die! So many prayers were monumental in this miracle.

The following fall came and I started college. The day after Thanksgiving, we learned a new Askin’s Tumor was growing between my heart, lung, pulmonary artery and spine. Medically, there was not much else to do. This was when I asked Dr. Bergamini, “How long do you think I have?” He explained that he did not know, but maybe a week to a few months, at the most, depending on what organ was invaded first. With his strong Catholic faith, he believed in miracles and had even seen some.

I dove into art, traveling, writing and speaking. The following fall, a whole year having passed, I was still alive as can be but was experiencing more pain. To help, I received 3 very low doses of chemotherapy. In December and January, a scan showed little to no activity in the tumor region.

During the entire time, my doctors scoured the globe for options from clinical trials to radical surgeries and new radiations. It seemed the ‘expert’ doctors and researchers were not willing to help or did not feel they could do anything. In any case, I definitely would not be cured in their eyes. No one else had ever survived my cancer after it reoccurred after transplant. Out of everyone, my family and Dr. Bergamini never gave up hope and I pleaded with God and Blessed Chaminade.

By May of 2004, an amazing surgeon, Dr. Blucher, came from the East coast. He wanted to take the tumor out. The surgery removed the entire tumor, which by this time was the size of a small Nerf football. It had grown to capacity and sat snugly against my fragile organs but miraculously had not invaded any of them though! The tumor’s biopsy results showed the tumor had completely died inside me. In medical terms, it is a complete miracle and very unexplainable. I am the only known case to survive a relapse of Askin’s Tumor following a stem cell transplant. ...

I continue to do a lot of art, writing, traveling and national inspirational speaking. I try to balance the cancer-related things (like lots of doctors appointments and side effects) with all the non-cancer things like school. I have accepted that cancer will never leave me. It is embedded in me with what it has left behind - physically, mentally, emotionally and spiritually- for good and for not so good.

Cancer is the absolute best and worst thing that has ever happened to me. Because of it, I am driven to eventually become an art therapist and continue helping others through speaking, writing, art and volunteering. As Albert Einstein once said, “There are 2 ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” I choose the latter and I thank God and Blessed Chaminade for the miracles along the way!

Today, I am grateful for: positive experiences, something new each day, a finished wedding dress!!, friends, family, support, love and God and miracles.



Lori B said...

I like that. I will try to live as if "everything is a miracle". Very inspiring.

Henrike said...

Thanks Rachel- so true. Today is the funeral and we got this bright-coloured bouquet to celebrate his life. He would have loved that.

No words on the summit, yet, but they're supposed to decide til Friday, so I guess I'll find out by then.