Proudly Supporting all Military Families with a Special Needs Dependent
October 31, 2014. A date etched in our minds forever, and the beginning of an uphill battle of apprehension. Four days later we heard the dreaded words, as Isabella our (then) 2 year old, was diagnosed with leukemia. Cancer…the thief that would steal her childhood right out from under her…and suck the very life out of my family. When I heard these words from the doctor; “I’m so sorry, Isabella has leukemia”; I couldn’t even breathe. I wanted to scream but nothing came out. I wanted to run but my whole body went numb with the words. I listened as the doctor continued to talk, but I never heard any of her words. Time stood still yet moved very quickly. Plans were put into motion, most without options. First up was surgery to place a chemotherapy port under Isabella’s skin on her upper chest, and into her main artery. Fear set in quickly…our thoughts ran rampant. Our precious baby’s skin was going to be cut! You tell yourself to wake up but this is not a dream, it’s a living nightmare. The next 9 days of the nightmare we lived in the hospital. When I say lived, I mean it literally…we never left, not even once. The piercing sounds and sterile smells of the hospital became engraved in our brain; we even felt them in our brief shallow sleep. We wore gloves not only to protect Isabella but to protect our own bodies too, as we changed chemo filled diapers. I held Isabella’s terrified little body down while they accessed her port for each treatment. Isabella was and still is being treated with adult chemos that are 30+ years old because of the lack of funding for childhood cancer research. There is no other option for these children! Thankfully, it did put her body into remission on December 10, 2014. Harsh adult chemotherapy for a two year old?! This is not good nor is it fair to our children. The side effects are unforgivable. The long term effects are to be determined.
In the months that followed Isabella’s diagnosis, there was no normal life. It no longer existed for us. We left normal life outside when we walked into the emergency room that night. We lived a new life filled with fear, confusion, and uncertainty all while begging God for answers and to please help us maintain our faith. I imagined selling my soul to the devil just to save my baby’s life. But God always intervened with His sovereignty. There were many sleepless nights for us and Isabella suffered nightmares and night terrors. To her it seemed as though we were the ones hurting her. I fought back the tears as she told me “you hurt me mommy” as I held her tight, forcing the meds down, and also during the blood draws when she was “poked” for each one. We slept, or rather tried to sleep, on the couch for three months because Isabella was afraid of the bed. For reasons of her own, she was also afraid of a bath, band aids, and changing her clothes. During this time Isabella would lose most of her hair from the chemo drugs, the beautiful curls that took her all her life to grow. They were not that long because she took her time in growing hair from the start. So these little curls were very precious to us. I decided that I needed to cut them off before they fell out! I would not succumb to this cancer and let it take those curls, a few strands at a time. They are now safe and secure in a zip lock baggy. Cancer you did not win this round!
Our daily routines begin with oral chemo, some of which smell and taste very bad. Trying to get a two year old to take these “chemicals” was like trying to nail Jell-O to a tree. So we opted to mask the smell and the taste with chocolate syrup! Steroids were the enemy. With them came rage, excessive hunger, and personality changes. All were temporary but yet another contender we had to deal with. The chemos were the worst of all because they brought many side effects. Most common is the nausea, fatigue, constipation, and loss of appetite. It also lowers the body’s ability to fight germs…even the simplest of them. Germs were life threating. Germs and chemo side effects landed Isabella back into the hospital on several occasions, one of which was very life threating. After receiving the chemo called Doxorubicin; or as it is more commonly known, The Red Devil, Isabella’s counts dropped dangerously low. Her own body started fighting against her. She developed Pseudomonas, a deadly flesh eating bacterial infection. This required surgery with little optimism from the doctors. Fear did not even begin to describe our feelings as they immediately took our baby from doing an MRI straight into emergency surgery. I held my breath because I couldn’t breathe anyway. This surgery removed a fairly large portion of skin and tissue from Isabella’s tummy all the way down to the muscle. Two days later another surgery of the same procedure to remove a bit more and make sure they got all of the dead flesh. Now you have to understand a few things about taking chemotherapy and your counts dropping to zero, which is where Isabella was at the time of surgery. Her body had no immune system at all….it was at zero, you cannot physically heal your body without an immune system. The doctors were skeptical of her healing ability to say the least. They placed a wound vac on the area involved and we prayed for the best and a miracle. Exhausted and drained we spent two days in the PICU where we wore gloves, masks, and gowns around the clock. Life hung in the balance in that hospital room, with the training of the doctors and nurses, and in the hands of God. Once again Isabella prevailed. It was neither easy street nor a simple bump in the road recovery either. Isabella’s play time consisted of riding red wagons up and down the halls of the hematology/oncology floor while attached to an IV pole and a wound vac machine. She would be released from the hospital with this wound vac machine which she appropriately began to call her “purse”. She literally had to carry it everywhere with her because it was attached to her tummy! She did this for 11 weeks… Hospital stays unveiled many obstacles and challenges. Heart wrenching allergic reactions to drugs, constipation (chemo side effect), NG tubes, blood transfusions, sleeplessness, and immobility from being in the bed so long, and her food allergies were always an issue.
Isabella’s hair began to fall out for the second time, hard to watch after it seemed to stop and grow back a little. Her pillow was covered in hair again and her little head became slick and shiny. She lost her long beautiful eyelashes along with her eyebrows. Oh how I loved kissing that sticky little bald head of hers while rocking her to sleep. But more than that was the love of seeing “fuzz” for the first time when her hair started to grow back…like a fuzzy little duckling. Isabella is no longer afraid of her doctors or nurses, I no longer have to hold her down; I just hold her hand now. The tears don’t come as easy and she loves to help the nurses when they access her port for blood draws. And she thinks this is all normal and that all children go through this. This to me is sad, very sad. She is strong, courageous, and a very brave fighter. She is my comfort when I hear these sweet words from her “I hold you Momma”.
There were several other occasions of having to be admitted into the hospital; from a simple hang-nail infection, more constipation, and the most resent, a common cold. These are simple for you and me, but deadly to a child whose counts have dropped below the normal range because of chemo treatments. Life gets put on hold; you drop what you were doing, there’s no time for planning out anything. You just STOP everything, put the family dog in the kennel, lock the house and hope for the best. You just get them to the hospital as quickly as possible. Then you do a lot of praying. Until you live it yourself…you just don’t get it!
Isabella is currently in her maintenance phase of treatment. This consists of daily oral chemos, once a month chemo in her port along with pneumonia prevention meds, steroids for five straight days each month, and every ninety days she surgically has chemo placed in her spinal fluid. Every day I am reminded that my child is still fighting cancer. We run a race on a daily basis with each pill I crush and each liquid med I camouflage with chocolate syrup. Each day I send her out into the world, I pray she stays germ free. Each boo-boo, knee scrape, carpet burn, hang-nail, and each bite she takes of her lip or tongue is a reminder. Where is the finish line? When does it all end?
While joining the many other cancer parents, our eyes have been opened to much more than we could ever imagine. Our hearts were stung by watching the other little children in the battle for their lives. Every scar tells a different story. Every little bald head reflects the fight that is within them. Every child lost is tragic and unnecessary. Through the exhaustion of it all we have loved, learned, gained and lost. We lost friends, but gained new, precious ones, placed there by God for a reason. It’s a new circle of friendship; one in which you share a common bond…the bond of cancer, the bond of fighting for your child with every fiber of your being. I can talk medical terms with someone that knows what I’m talking about and yes I use the BIG words, they are common to me now. I talk and listen with friends who understand. We know each other’s heart; how it feels and how it breaks. These friends get me! The hardest part though, is the family members who have distanced themselves from us now, those who do not seem to be there for us for whatever reason. It hurts but you begin to get over it because you do not have time to dwell on it. This is our new life, our new normal…one living with cancer; however we will never ever let cancer define us!
Isabella turned four years old recently. She will have endured 804 days of fighting for her life when her treatments end in early January 2017. But it all never really ends…there will still be doctor visits, checks and rechecks, a life time of wondering if cancer will revisit. There’s a black cloud of fear hovering over our heads which holds the side effects that might show up later in her life. No matter how long she has been in remission, each new bruise will try to convince me that it has returned, a reminder that cancer can come back, rearing its ugly head in our thoughts. But in the face of adversity and doubt we are always reminded of the One who is in control. Psalm 25:1. Courage and strength prevails every time.
This is just the short condensed version of our story, our new normal.
Isabella’s Beads of Courage
The definition of courage for Isabella is “strength in the face of pain”. The definition of courage for her parent’s is “the ability to do something that frightens one”. Isabella’s parents had the courage to do something very frightening after she was diagnosed in Nov. 2014 with ALL Leukemia….there was no other choice for them, she was only two years old at the time.
Isabella did not know the dangers of cancer or the grief this would cause her family. But she knew pain, sickness, aches, and boo-boos; and fear became known to her for the very first time in her life. Her courage developed and flourished from her Momma and Dada’s love and strength, and trusting the many doctors and nurses as she grew to love them too.
The Beads of Courage philosophy provides innovative, arts-in-medicine supportive care programs for children and their families coping with serious illness. Beads signify strength and courage and they’re just right for recognizing and recording the child’s courage as they travel their journey. Each bead is representative of an accomplishment, a treatment, an event, and bravery; all of which show true courageousness. The collecting of the beads helps the child find meaning in their illness and restores a sense of self while they cope. The program also provides something tangible the child can use to tell about their experience during treatment and after. In less than two years, Isabella’s strand of beads is now over 25 feet long and still growing.
Isabella earned her beads through some very hard times and struggles…and through the fear of the unknown. In the beginning there was the fear of pain from needle pokes; strong meds and chemo which caused undue emotions, nausea, constipation, and unrest. Being so young, Isabella does not know how to ask questions, she just sees and reacts to what is happening to her. Sadly, she soon accepted that this was a “normal life” for her and she began to trust that it was OK.
~Isaiah 30:15 tells us that “…in quietness and in confidence shall be your strength”. This is true in the mind of a small wondering child who doesn’t understanding what is really happening to her body. She is quiet, yet she is building confidence from each milestone she reaches. She has achieved many of those but she also has had some significant challenges, each of which she earned a bead. She gets a bead for each day she endures in the hospital; a bead for each poke she gets; and even a bead for losing her hair, both times. There are beads for each x-ray, EKG, ECHO, and test; each blood transfusion, blood draw, ambulance ride, biopsy and bone marrow aspiration. Each bead is brightly crafted in every color under the sun, and there is even a rainbow bead for PT and other therapies. They are made of glass, plastics, and artsy resin and come in all shapes and sizes. There’s a heart shaped bead for being in the PICU. There’s a lumpy shaped bead for each “bump” she hit in the road of her journey, like a dangerous life threatening infection. She earned white beads for each chemotherapy treatment and star shaped beads for each surgery she underwent. Her most prized bead is the big bright beautiful one, which was for reaching remission! Praise the Lord! There are beads for all her acts of bravery, valor, boldness, bumps, grit, heroism, and COURAGE. Isabella is worthy of all of these beads and more with the exception of two….these are the two beads we are elated that she did not receive: Glow in the dark which is for radiation treatments and the dark green bead for stem cell harvesting and dialysis. Not earning these beads is OK with us.
Children, like Isabella, are little courageous warriors, who fight with no other choice, and who deserve an escape from their battle. To them the beads are not a reminder of what they have endured, but a representation of fighting and winning over cancer. It brings back the joy and happiness that children are cheated and robbed of by cancer. When they build that long lengthy strand of beads, it illustrates who the winner is!
“Be strong! Be courageous! Do not be afraid of them! For the Lord your God will be with you. He will neither fail you nor forsake you.” ~Deuteronomy 31: 6.
A few facts: Childhood cancer statics are staggering. Each year around 13,500 children are diagnosed with cancer in the US, that’s more than a classroom of kids per day. Before they turn 20, about 1 in 285 children in the U.S. will have cancer. Every two minutes a child is diagnosed with cancer around the world. The frequency of invasive pediatric cancers is up 29% in the past 20 years. 35,000 children are currently in treatment for cancer in the US alone. Cancer is the number one cause of death by disease among children and about 35% of children diagnosed with cancer will die within 30 years of diagnosis. Because of the treatments they endure, by the time they’re in their 30s or 40s, more than 95% of childhood cancer survivors will have a chronic health problem and 80% will have severe or life- threatening conditions. Childhood cancer survivors are at significant risk for secondary cancers later in life. On average, about 17% of children die within 5 years of diagnosis and 25% of all kids who are diagnosed with cancer die. The average age of death for a child with cancer is 8, causing a child to lose 69 years of expected life compared to 17 potential life years lost for adults. More children die of cancer every year than adults died in the 9/11 event. Childhood cancer research is extremely under funded with less than 4% of all the designated funds going to research for them. The other 96% goes to adult research. In the last 20 years, only three new drugs have been approved that were specifically developed to treat children with certain cancers. Children diagnosed with cancer are mostly treated with adult chemotherapy drugs. And here’s the kicker: Childhood cancer drugs aren’t very profitable for pharmaceutical companies, which is why so few have been developed! BOOM!
This is war on our children.
This is unacceptable.
They “say” childhood cancer is rare.
Our children are our future.
Kids with cancer need us. Two minutes from now, another child will be diagnosed with cancer, and another family will be faced with the very real possibility of losing their child.
Holly Hardwick was born and raised in South Alabama. She has an Associate’s degree in Early Childhood Development. She is a mother of 2 daughters (1 in Heaven). She and Richard have been married for 9 years. Richard is serving in the USCG currently in Illinois. They have been stationed at 4 different units/stations in 3 different states. Currently Holly is a stay at home wife/mother to their daughter Isabella. Holly loves to travel, anything vintage, coffee, and all animals!
Allergy Friendly Family Life
It's serious. It's sarcastic. It's sweet. It's sincere.
A site to discuss and learn about TRICARE Philippines Policies and Issues that are often times implemented in secret by the Defense Health Agency (DHA). Policies that result in payments at about 7.7% and 3.8% of what they should be or $328 per under 65 person instead of the expected $4,261 & $328 per over 65 person instead of the expected $8,650.
words and recipes from my kitchen to yours
LIFESTYLE - by Esther Herrero
living the saga called life....
Vet tech student. Student Naval Flight Officer. Professional napping dog.
finding contentment in the unexpected
Musings from an unsuspecting navy wife
Attempts at Adulthood
Bringing Community Resources Together to Support Families with Special Needs
This WordPress.com site is about the ups and downs of life and autism.
Autism, Parenthood and life...
a fun site for inclusive wellness activities for kids of all abilities
Homeschooling, gardening, parenting, special needs, Buddhism, living, drinking, eating and loving.
Life Is Worth Living