September is Pediatric Cancer Awareness Month. At PCFLV, we are committed to spreading the GOLD all year long. However, in September, we truly make it our mission. 30 Days, 30 Stories celebrates the children we know and love and the brave battles they fight and have fought, with their families by their sides. In celebrating these beautiful children and their stories, we hope to inspire you to join us in our mission to SPREAD THE GOLD in September and all year long!
My name is Raechel. Ever since I was young girl, I always wanted to be a teacher and a mom. From the time I was five years old, I used to play school with my only sibling, my older sister, and our friends. When they weren't around, my dad was one of my favorite but more difficult students. I didn't always get to be the teacher but when I was, I made sure the kids in my class were taught their subjects well. We used to have reading time with story books and spelling class, followed by math class.
During class, the children were given special recognition when they did well, most of the time they were rewarded with cookies or stars were placed on their papers. When the rewards came out, I was excited also. My Dad always enjoyed his rewards, and I loved giving them to him because he would really play the part of the excited student and always would try hard to get the rewards.
Math was always my favorite subject when I played school and while I attended schoolâ€¦as I went through my years of learning through elementary, middle school and high school including my period of homebound tutoring. I love math and plan on pursuing a degree as an elementary math teacher. I think I decided to choose elementary math because that is where children need the most assistance. The science behind math is more than repetitiously writing your multiplication / division tables; it is understanding the concept of how math works and why there are many ways to arrive at the answer and how the different ways to make problem solving quicker. My parents always were big on me understanding the concept of math and comprehension when reading. This ethic was always emphasized and practiced in my home.
I mentioned homebound as part of my education because when I was 16 years-old, I was not feeling well. I had just taken a job at a grocery store as a checkout attendant and would always be tired when I got home. I got a lot of colds and was struggling to catch my breath when I would climb the stairs and I slept a lot. My mom, who is a medical office assistant, was very concerned and was running regular blood work on me to check for possible mononucleosis or thrombocytopenia. The reports came back and my cell counts weren't very good.
I recently turned 17 and it was the beginning of my junior year in high school. While I sat in class the school office contacted my teacher and told her I had to leave because my father was there to pick me up. I was taken by surprise by all of this because my parents had been working behind the scenes as a result of my condition. When my dad picked me up he told me a little about what was going on and that my cell counts were down and that was why I was feeling like I was. He told me we were going to see a hematologist and not my regular family doctor. When I met the doctor she asked me how I was feeling and I told her. She felt my gland areas and asked me a lot of questions. She started to speak about my condition and how all my cell counts were dropping. My dad asked her if she thought I had thrombocytopenia, and she said no. She said with the way all my counts were dropping, she suspected acute leukemia and said I needed to get a bone marrow biopsy right away. I was shocked, my mom started to cry, and my dad just sat there and said, "ok." After some more discussion, we got up and the office staff made my appointment. My world was changed forever on this day.
Next came the waiting period and this took about two weeks. The report came back and was normal to some extent but additional samples were sent to a cryogenics lab in Boston for flow cytology. My mom being a proactive woman also reached out to The Children's Hospital of Philadelphia and made contact with a nurse by the name of Nancy Fritz. Nancy said the initial report was good and, as soon as the cytology report came back, to send it to her. Finally the report came back and revealed I had monosomy 7 and possibly Myelodysplastic Syndrome (MDS). We contacted Nancy and she said this report changes everything and she would get us an appointment with a top bone marrow specialist by the name of Dr. Monica Bessler and her team. On September 26th we were greeted at CHOP by Dr. Tim Olson. Dr. Olson was given the deed of breaking the news to us, and I know it was because of his caring and comforting bedside manor why he was given this difficult task. We were taken back to an examining room and he discussed why we were here and that my diagnosis was confirmed by the staff at Children's Hospital. During Dr. Olson's discussion, other doctors entered the room as we were told more about my disease and the only known cure for Myelodysplastic Syndrome is a hematopoietic bone marrow transplant. My parents both were visibly shaken. I sat there and listened to what the doctors had to say and I saw a lot of them that day. I learned real fast about my bone marrow transplant, what kind of treatment I would receive, how long I would be hospitalized and the likelihood that I would become sterile as a result of the treatment.
I was okay with everything I was told up until the part that I most likely would become sterile. I always wanted to have children and now I had to decide real fast about my future. I was told about egg harvesting and the low success rate, also I was told about ovarian tissue preservation and the even lower chance of successful pregnancies. I was also told how I would have to have hormone injections to have my body produce a lot of eggs for harvesting and the decision would have to be made soon because my disease was aggressive and I didn't have a lot of time to think about it. After hearing that, I decided I didn't want to take the chance of my disease getting any worse and the chance that my future child could inherit my disease. It wasn't fair. I decided at that moment I would not carry a child; when I decide to become a mom, I would adopt a child. My parents were amazed at my decision and told me they supported me whole-heartedly. We left the hospital that day and my parents had to contact my sister who was away at college and break the news to her; she insisted during the phone call that she would do whatever she could to help me get better. Over the next couple of weeks, I was at CHOP weekly for testing, evaluating and determining if I was a suitable candidate for the transplant. Finally the news came back that I was cleared for the transplant. Stephanie, my sister, was a perfectly-matched tissue type sibling and would be my donor. The doctors said that I had the best chance for a successful transplant with this news.
The transplant date was set; it would be November 23rd of 2011. I learned the doctors had interviewed Stephanie to discuss her college class schedule prior to setting the date, and the whole procedure was based on her availability.
We only had to have one more meeting, and this one was to discuss the pros and cons of the transplant. We were told by Dr. Olson this discussion would take about two hours and he, along with an attending physician and the BMT social worker, would be present.
During the meeting my parents asked a lot of questions, while I laid on the exam table and listened. At one point while the doctors were discussing the "things that could go wrong, my dad just said "STOP!" The information was coming at him too fast and he needed to absorb what was being said. The doctors looked at me and asked if I had any questions I looked at them and my parents and said "I don't want to die so I'm going to have the transplant. Do whatever you need to do to make me well and let's get going."
I entered the hospital on November 14th 2011 to begin my conditioning regiment. On this first day, I had a small procedure where a surgeon inserted a catheter called a double lumen broviac into a main vein near my heart muscle. The broviac would allow greater amounts of medication to enter my body quickly. The next nine days would be the most grueling days of my life. On November 15th I began three days of total body irradiation with radiation levels so high that if they weren't split up, I would have died in about two weeks. After radiation therapy and for the next four days, I received chemotherapy. Before I knew it, it was Tuesday November 22nd which was my day of rest, and my body was allowed to stabilize. I know therapy is associated with recovery and some discomfort can be expected, but what I received was more than I could imagine. One type of medicine required me to shower every two hours because the residue that exuded from my skin could cause irreversible skin damage. During the other treatment, I was forced to urinate every two hours because the chemicals could damage my kidneys and bladder. All I wanted to do was sleep. My parents never left my side during my treatments. They pushed and talked with me, and their support helped me get through. Chemotherapy in my opinion was far worse than the radiation therapy. As a child, I always had a fear of vomiting; I have now faced and recovered from that fear. I vomited more in that five-day period than I did in my entire 17 years. I overcame my vomiting phobia by understanding that my body felt better after it took the necessary actions to rid it of the poisons the medical team was administering to me.
November 23rd was here. My mom spent time with me while my dad and sister went to the surgi-center where my sister was prepped and donated her bone marrow. The doctors removed about two liters of marrow from both sides of my sisters hip bones. My dad and sister came back to my room, and we waited while the marrow was processed. My sister's blood type and mine were not the same so the red cells were removed from her marrow by a washing process. While we waited we celebrated my "new birthday" because I was getting a new lease on life. Finally the marrow was delivered in a special biohazard container. Once it was placed on my IV pole, I looked and it was a very small pouchâ€¦pale pink in color, containing 10mL of stem cells. The doctors told us the bone marrow transplant was nothing more than a small blood transfusion. The pouch was connected to my broviac and the stem cells entered my body at a controlled rate that took about one hour to complete. Then it was over.
Now the waiting period began again. I received multiple transfusions of packed red blood cells (PRBC) and platelets during this period. I developed reactions to blood products and required medication before transfusions to keep me from reacting and, in turn, the preventative medication knocked me out and I slept for incredible amounts of time. The medical team tested my blood daily for the next two weeks and we waited while my cell counts rose and dropped. During this period, I developed mouth sores so severe I couldn't eat or drink, I was hooked up to IV nutrition and fluids. I received hydromorphone through a regular IV drip and also had a button for demand delivery. I was slowly weaned from medications and nutrition. Finally, as the team said, one day the cell counts just "popped" and they continued to go up from there. When I reached an ANC count of 250 for a period of three consecutive days, my discharge was discussed, and I received an education on the medications I would be taking at home and the care of my broviac.
On December 24th 2011, Dr. Bunin, the head of the CHOP BMT clinic, came into my room and told me "Your sister must really like you." I wasn't sure what she meant, but later learned that my first engraftment study came back and the results indicated the engraftment was taking and I was 100% of my sister's DNA. This is good and as I go through life, I'll have many more studies. As of this essay, I have been through four studies each one showing no signs of failure. My DNA and blood type has changed to that of my sister.
I am now 11 months post-transplant and doing well. My doctor's visits have gone from weekly to monthly, and soon I expect them to become bi-monthly. I will be watched over by my oncology team and continue with routine doctors visits for the rest of my life.
I am grateful for all that I have been given.
A note from Raechel's parents, Minde and Ron:
In January of 2013, Raechel relapsed and fought courageously for that entire year. She sought treatment from St. Jude in Memphis, TN and also went for a trial to the Seattle Cancer Care Alliance in Seattle, WA. Raechel's disease prevented her from participating in the Seattle trial, and she returned home to The Children's Hospital of Philadelphia, where she was placed on palliative care. Raechel was glad to be "Home" and she passed peacefully, surrounded by family and friends, on January 19th 2014.
She is missed very much