Sapphire Lorayne (named in honor of her two Maternal Great-Grandmothers), was born on lucky 7-7-2009, at 38 weeks, a 8 lbs-9ozs baby girl; it was a indeed a special and long awaited day for Pascal and Summar to receive their 2nd child into this world. Though the caesarean birth was without complications, Mom's pregnancy was not so uneventful, as she had insulin dependent gestational diabetes, and high blood pressure, requiring multiple appointments for "fetal monitoring" each week. None the less, Summar truly enjoyed her pregnancies, and counted down the days in excitement to meeting her Baby Girl. Mom's complications ceased after delivery, and there were absolutely no concerns with Sapphire's health at that time. She was a healthy child in the following years, despite chronic ear infections. She was always very daring, a bit developmentally advanced, encouraged in part by her big Brother Jayden, who was 2.5 years old at that time. Sapphire lost the brunette hair which she was born with, and grew beautiful blonde hair which compliments her sparking, blue-mixed eyes. Sapphire was a blessing to the Ruelle family, and she had an extra strong bond with Mom, as an avid nurser for 20 months. Even when Summar returned to work, she pumped her milk religiously and Sapphire nursed in the evening. Mom was ready to wean much sooner, than baby, that was for sure! Breastfeeding requires much dedication, is a selfless and tiresome commitment, but provides for a nurturing and healthy connection with baby when it works for a Mother and Baby; though it seems so ironic, that this ended up being the original, primary site of Summar's cancer.
Up until mid-September of 2012, Sapphire Lorayne continued to excel in Preschool socially and developmentally. She was a happy, seemingly healthy, energetic, silly three-year old. But on Monday, September 17, 2012, she was suddenly, and unexpectedly diagnosed with Leukemia. Two days later, the cancer was further characterized as: Acute Lymphoblastic Leukemia (also known as ALL). ALL is a cancer of the blood, which starts in the bone marrow and spreads to the bloodstream. Leukemia starts when a single, young, white blood cell called a "blast" develops a series of mistakes or mutations, that allow it to multiply uncontrollably. Eventually, blasts take over the bone marrow and crowd out normal blood cells. At the time of Sapphire's diagnosis her red blood and platelet counts were so dangerously low, that according to her Oncologist, she would only survive a few weeks without intense treatment and immediate red blood/platelet transfusions.
The natural questions that immediately come to mind, are how was Sapphire diagnosed, how was a problem even suspected, prompting a doctor visit? Well, a couple of weeks prior, Pascal and Summar started noticing somewhat excessive bruising on Sapphire, primarily on her arms and legs. This little preschooler was not necessarily a pretty Princess dress-up girl at the time but more like a rough and touch, tumble girl. She was the one on the playground on the scooter, on the bike, climbing up and down the slides while her friends were playing dress-up and dolls inside, so Mom and Dad were inclined to think these were the nature of the injuries initially. Sapphire never complained of getting hurt, and this was also confirmed with her caregivers.
As the weeks progressed, it appeared that Sapphire's bruises were getting worse and worse, there were more of them popping up everywhere: on her shins, elbows, back, chin, cheeks, top of feet. She had made complaints consistently at home that she could not walk, that her legs hurt and needed Mommy to carry her, especially up and down the stairs. But with no significant visible injury and no such complaints at school, it was difficult to decipher if this was a concerning symptom, or a typical 3 year old who simply loves her Mommy to carry her. Sapphire had also been running asymptomatic fevers as well over the course of previous weeks, topping 103.5 the evening before her diagnosis. An appointment had been already scheduled to address the bruising for Monday, September 17th, and now there was the fever to contend with.
On the morning of Monday, September 17th, exactly one week after Summar's Stage IV Breast Cancer Diagnosis, Summar and her childhood friend Farrell visiting from out of town to provide support, took Sapphire to the Pediatrician office, while Pascal was at work. Both adults walked into that doctor office with hopes of simple diagnosis' such a vitamin deficiency or anemia for the bruising, and maybe the beginning of an ear infection or strep throat for the fever, to be made that day.
Symptoms were explained to the Pediatrician and the fever was rather quickly dismissed, with instruction NOT to administer Tylenol or Ibuprofin; this was rather disconcerting. Nurses came into the exam room to draw blood and after quick processing of the labs in-house, within minutes the Doctor returned and very briefly and vaguely stated, her blood counts were off, and that Sapphire should be taken immediately to the hospital to see a Hematologist on the 3rd floor who was waiting and that the blood results would be faxed there. The Doctor stated she was unsure of what the numbers could mean, but the specialist could explain. After driving across town, Summar and Farrell wandered the hospital campus with Sapphire on hip, and after some guidance from the Information Desk found the correct elevator at the new Children's building. The elevator doors opened, and to their horror and complete shock, the placard read:
3 - Children's Cancer and Blood Disorders
What happened next was a blur of tears, and shakiness, and nurses, and doctors, and horrendous phone calls to loved ones, and more tears, and bodies heaving with pain.
There still are many "Whys?" but never a "Why us?" Just "Why?" It is an important distinction to make. How could this happen to an innocent child, and at the worst possible time while the child's Mother had just been diagnosed with a life threatening illness herself? How is a Mother to care for her child in this state? Summar, Pascal, Jayden, and Sapphire's lives were turned upside down - not once, but twice - in the span of two weeks. The answers to the question "why" will never entirely be understood. However, the Ruelle Family pushed, on and Sapphire endearingly called herself and Mom, "Super Hero Cancer Fighting Girls". Pascal left his job that first day of Sapphire's diagnosis to meet the girls at the Hospital, and has since been unable to return, due to the demanding treatment schedules and care required for both Sapphire and her Mother. Though Sapphire's cancer was considered in remission by Day 9, her treatment plan has spanned in excess of two years, entailing a port placement surgery, large doses of steroids, daily oral chemotherapy, weekly and monthly IV chemotherapy, and repeated lumbar punctures including administration of chemotherapy, which is flushed into spinal fluid for preventative treatment of spread to this area and her brain. She has had numerous hospital stays (each time she has had a fever/infection, being at high risk due to having low white blood counts, caused by the chemo), countless needle pokes, several instances of anesthesia sedation, red blood and platelet transfusions, and antibiotics. At the young age of 3, Sapphire lost all of her hair; she had a hard time understanding what was happening to her body, and confided in her Nan (Maternal Grandmother) that she was sad, that she would not grow her hair back until she was an adult. Needless to say this was promptly re-explained to her, but some of the other losses and side effects of treatment were not so easily remedied. In the beginning she would not take her oral chemo, making it necessary for Mom and Dad to "force it" on her, which was traumatizing for the whole family. The ravages of chemo and steroids on her body did and continue to, make her feel crummy and act out in frustration, with regret and sadness afterwards, "because she feels yucky." At 5 years old now, she can more easily communicate her feelings, needs, questions, and worries, but at 3 it was much more difficult. During the first year, Sapphire was pretty much quarantined to the house, missing out on the many things Brother got to do, including going to school which was a big loss for her. The Ruelles went from being a very active, outdoors Family, to being separated a large portion of the time at different hospitals, and going a bit stir crazy when at home. As a result of being so immune compromised, Sapphire was unable to have other school aged guests, go into crowded public places (or even stores or restaurants), play in dirt (help in the family's vegetable garden) or sand, or play at a public playground, among many other restrictions. Despite these challenges, Sapphire has been resilient, continuing to care for others including Mommy when she was "sick" and she has become quite the model little Oncology Patient. Sapphire is in the Maintenance Phase of her treatment "Road Map" and the family continues to count down the days remaining on treatment. It is never easy to see a child suffer or to endure such a toxic and lengthy treatment plan, but Summar and Pascal are hopeful and Sapphire's Oncologist is quite optimistic. There is the expectation of and concern for long-term side effects of chemo however. This little girl loves animals, especially dogs and horses, loves dancing, and has big plans of being a Veterinarian when she grows up. She is very much looking forward to not taking her evening chemo, which dictates her eating schedule, and the steroids that make her feel so crummy and emotional. Another reason she is anxious to complete treatment and have her port removed, is so she can finally participate in extracurricular activities like her Brother, including Dance and Soccer at the top of the list. Sapphire brings much joy to her family, and her sweet personality and spirit captures all those she encounters. The love and support provided to Sapphire by friend, family and strangers, to make this journey more bearable, is much appreciated by the Ruelle family and will never be forgotten. The family has also received much support from the Children's Cancer Association and Candlelighter's for Children, thus have reciprocated when possible, by sharing their experience with others during fundraising and awareness events.