Last trip to Memphis for my granddaughter’s treatment for leukemia at St. Jude’s Children’s Hospital. Rain is pelting the windshield, wipers fighting the force of water and wind then spots of no rain at all. It is a symbolic example of our three year journey coming to a close. We pull into the parking lot of the Tri-Delta House where we have a room reserved for us. We see new people and the familiar ones still fighting and hoping for a cure.
The next morning we arrive for the first of three MRI’s and labs, CAT scans and psychological testing that takes up the entire day. Tomorrow is full of appointments also. Humidity is heavy and it bears down on already stressed out emotions. Parents walk around downtrodden. Eyes vacant, trying to follow directions like good little boys and girls in hopes that a reward of a miracle of life will happen for their child. Robotic migrations from clinic to clinic carrying the all-important daily schedule that can change at any moment and invariably does. Waiting rooms are around every corner because that’s what you mainly do. They are filled with distractions for the child waiting for what they know will be the next painful procedure. Parents hate it too but there’s nothing left now except faith and hope and perseverance. It is an atmosphere of controlled chaos and a test of human endurance as to how many emotions you can shove down internally and keep from your frightened child moment by moment. Your own silent scream must remain that way until the end whatever that brings.
The lodgings are more than adequate. Living rooms, play and game rooms are adorned with beautiful furnishings, toys and up to date technology. Every wall has painted murals of landscape and animals that most of the children will not get to see, for real, for a long time. Some huge temporary houses like McDonald’s House have several big kitchens so you can make your own meals during the long term stays. The compound is gated and ran like a 4 star resort only what you are going to experience has nothing to do with pleasure and relaxation.
Staff does not build false hope even though it’s the only thread left in the fabric of your life to hold on too. You learn to build your own. This is a sub culture of desperation where everyone here belongs. The journey is like a train speeding toward a destination where every rider hopes they can eventually get off and get on with their lives. Some do but some are derailed along the way and never reach that station. This fact lives daily like a virus in each parent’s heart. None of this is St.Judes fault. They try very hard to accommodate but the situation is devastating and personal. It takes a very strong parent to endure and balance the medical control with their knowledge of what’s best for their individual child. Often you find yourself swinging from despair to anger.
We are grateful, relieved and blessed because we reached our train station as all the tests were negative and my granddaughter is cancer free. But, the fight continues there for so many. It is a journey that changes your Soul and lives within you forever. We believe in playing forward every life experience we learn from. My daughter met a grandmother this morning who has just arrived with her granddaughter and daughter. She is lost and she is desperate. My daughter gives her insights, navigation tools and when to take some advice with a grain of salt and which to pay attention too. She tells her the most important tool is research of everything, the drugs, procedures and advice. She has helped so many parents over these years cope during the worst journey of their lives.
My granddaughter started a website called “Freaking Out On Cancer” the first year of treatment. It is a place kids can talk about pain, victories, despair and joy. She intends to continue this website throughout her life. This journey into the valley of death was traumatic for our whole family but we made it through. Playing this experience forward is a way we can repay our incredible miracle. Each one teach one is the golden key of humanity.
The following essay was not written by me. it was written by my 16 year old granddaughter whose strength and depth of character is way beyond her years. It has an important message in it that inspires those who have had to deal with overwhelming trauma and survived. Hope you enjoy.
“Raven I regret to tell you this, but you have Leukemia” These words shattered my world and turned it upside down. All I remember is my mom jumping in front of the doctor looking me in the eyes and telling me “Raven Listen to me You can beat this all you have to do is keep a good attitude!” my doctor tried to interrupt her but she put her hand up and said firmly that she needed to talk to her daughter. He smiled and walk out. My mom then looked back at me and kept telling me that as long as I didn’t give up I would make it through. She said its 10% meds 90% attitude, and that sunk in because I still remember it like it was yesterday. And that’s how I found out I had Cancer
Next thing I know I’m getting sent down to Memphis, Tennessee to go to a special hospital for kids in my position. My position? All I know is that I had to pack up with a duffle bag of clothes leave the only place I’ve ever known and be shipped off without no more than 5 hours’ notice because the ambulance was already on its way. Why me? I know I’ve had bad luck but this is ridiculous. I look out the windows in the ambulance and I see oak trees and wheat fields that are just starting to wither away. Is that going to be me soon? Withering away as the months or weeks go by? I guess we’ll find out in about 4 hours huh?
39787 that’s my new name I guess. That’s what everyone calls me. “Is that 39787?” “Is 39787 hungry?” “39787 is not in her room. Where is she?” This… this 5 digit number is my new identity. In fact, I got so sick and tired of it that, I snuck out of my room just so I could get away from it all. But then everything erupted in chaos. All I was doing was sneaking down to the kitchen to read in peace and quiet. It was bad enough I had to drag around this pole of fluids that was about twice my size. But now i can’t even leave my room without getting lectured about fall risks and white blood cells. I was just trying to get out of this medically induced prison. You’d think they would have some consideration but I guess when you see it every day you get immune to it. I just hope it gets easier because I don’t know if I can do this for….HEY HOW LONG DO I HAVE TO DO THIS FOR?!?!?!?
“No! I will not stay here for 4 months I got plans!!! I got school!! I can’t just up and leave my friends! My FAMILY!! No I won’t do it!!!” They can’t expect me to do this. They can’t make me! Can they?? “We don’t have a choice sweetheart” mom said with sorrow in her eyes. It was then that I realized they were not only taking me from my life but taking her from hers as well.
Then… came the side effects. After getting a Rubber ball attached to my heart, came the meds and the consequences. That had to be the worst part. The Chemo they give you messes with your energy and cells, so to counteract them they gave me steroids.
Yes. I did say steroids. And those steroids came with a nasty price. A price I wasn’t aware I had to pay.
If you have never heard of avascular necrosis, you would not be the only one. Avascular Necrosis is a deterioration of the bones and/or Joints. If you catch it in time they can be saved. for example if you catch it at 30% then you can get a surgery where they place a metal rod in your bone/joint and crush it up to get blood flow through there. I have had this on my knees and ankles, even though they were at 90% my hips and shoulders were too far gone to save, so for those they had to replace them. God It makes me feel like I’m 80 with a hip and shoulder replacement.
Anyways now I have had 6 surgeries in/on my nose, port (rubber ball), shoulder, hip, knees, and ankles. That doesn’t even count the spinal taps. Which for those of you who don’t know are when they stick a needle in the base of your spine and take out fluids or put in chemo. And when it comes to spinal taps I’ve had over….100. But those don’t bother me except for the fact that when you get knocked out for a spinal tap you can’t eat for 7 hours before.
Now there are time that I look back and laugh, which I know does not seem right. And I’m sure you are asking yourself “how can you laugh at something like that?” and I have a way to show you. So I’m going to end this personal narrative on a positive note with a funny story.
I was about halfway through treatment when I had to do a spinal tap on a very busy day for the hospital. So just like any other hospital I had to wait in the waiting room. (Now let me remind you that it was about 2 o’clock in the afternoon and I had not eaten since midnight the night before so I was hungry) I got up to go ask the nurse how much longer we had to wait and she was eating a bag of spicy Cheetos and I wouldn’t have minded if she wasn’t so mean about it. “Excuse me miss?” she looked up with a glare in her eye and said “what?” I didn’t know what to think but I got a little irritated but not enough to say something so I just smiled and asked “would you happen to know how much longer till they can get me back in the operating room?” (now before I go any further it won’t make sense if I don’t tell you they had huge aquariums in the waiting room with little clown fish in them) so she said “ Do I look like I would know?!?” by this time I was ticked off so again I smiled and said “well you look like you would at least know where I can get some tartar sauce” she was confused and said in a tone I rather did not like “ why would you need tartar sauce? I know for a fact you aren’t allowed to eat” I couldn’t help myself I smiled evilly and said “cause I’m about to go eat Nemo. And if you’d rather I didn’t I suggest you Talk to the doctor and see how long till they can get me back!” She looked horrified to say the least. But hey it worked I got called back 2 mins later.
And that’s my story. I would to add that I am 4 months away from being done with chemotherapy. um let me think I believe I covered everything. Oh… If you have a question about any of this just feel free to ask me. I’d rather you know than guess. So I guess the moral of my story is you can find humor in almost anything if you look hard enough…
When I got the call at 5am that my granddaughter and her mom were at the hospital my mind was spinning with panic. When I learned the sudden and unexpected diagnosis was leukemia a silent primal scream of agony tried to escape from my soul. For the next week it was followed with denial, anger, fear and an emotional pain that threatened to sweep my life away. I know other families have gone through this horrifying journey but this was “my” grandchild. All I could think of was her charm, beauty and honor roll mentality and the fact her 13th birthday was just last week. High school was just ahead with exciting opportunities for friendships, proms, dates and preparation for college. Was all that gone in one sweeping diagnosis early one morning?
I’ve learned a lot since those first few months. She is 16 years old now and will be finished with the treatment protocol the first of the year. It was an agonizing three years of pain and sickness complicated by the fact she was allergic to almost all of it and now is left with bone joints that are crumbling from a reaction to steroids. If not for St. Jude’s Children’s Research Hospital in Memphis all hope would have been lost. I knew Danny Thomas started the hospital and research center but was curious about the Saint he named it after so I did some research.
It is named after Saint Jude known as the patron of lost causes and desperate cases, and the patron saint of hospitals. Jude was one of Jesus’ twelve original apostles. His lineage is documented as a direct relative of Jesus, a cousin. There are certainly many sources of shared personal history, for instance any reference in the New Testament to “the apostles” would presumably include him. Thus we can conclude he was in the boat, on the hillside, in Jerusalem, at the Last Supper, etc. He also preached and taught in Turkey, Syria, Libya, Samaria, Judea and Palestine. Saint Jude is also the patron saint of hope. Maybe this is the most important thing he represents as many times it is the only thread left to grab onto. There is something endearing about its endurance when times are bleak. In Emily Dickinson’s “Hope is the Thing with Feathers,” the poet writes about hope as a bird that continues to sing despite not knowing the words, despite being stuck in a storm, despite the worst of conditions.
Hope is the belief that circumstances in the future will be better. It’s not a wish that things will get better, but an actual belief, even when there may be no evidence that anything will change. We held onto that thread with our belief of hope so tight that most times we were exhausted but we never gave up. And now she is in remission. Her joint surgeries almost half done and she has just re-entered high school after two years of treatment. Her charm, beauty and intelligence still in place only now honed with a strength and maturity only a life tragedy can teach you. Hope is not denial, it is faith in the darkest times. Danny Thomas selected the perfect Saint to represent what his heart was trying to give to children and families in dire circumstances with a crisis too devastating to comprehend.
More than 100 years ago it was discovered that if blue dye was injected into the bloodstream of an animal, that tissues of the whole body EXCEPT the brain and spinal cord would turn blue. To explain this, scientists thought that a “Blood-Brain-Barrier” (BBB) which prevents materials from the blood from entering the brain existed.
Because the blood–brain barrier prevents entry into the brain of most drugs from the blood it makes it very difficult to develop new treatments for brain diseases, or new radiopharmaceuticals for neuroimaging of brain. All of the products of biotechnology are large molecule drugs that do not cross the blood brain barrier. Currently, less than five per cent of drugs (made up of very small molecules) are able to cross the barrier.
I found one of the interesting facts about getting through the blood brain barrier with medication. It seems that essential oils can cross easily. It is because of their volatile nature (rapid evaporation) that many oils are able to help in deep healing of the cells and that some oils appear to cross the blood-brain barrier and affect the emotions and the brain. Although most of the components of an essential oil have the power to heal, it is often the lightest chemicals that are able to penetrate first to the cells. Some, like the monoterpenes, carry oxygen, while others such as phenols help improve the functioning of the cells by removing wastes. One of the most important implications of the light, volatile molecules in an essential oil is how it impacts the health of the brain. Most medications are unable to directly affect the brain: the blood-brain barrier filters almost all chemicals in the blood, blocking them from entering the brain. The light, small molecules in an essential oil are different. They are able to cross over the blood-brain barrier and are used therapeutically to help those with memory loss or other brain disorders, Alzheimer’s, depression, ADD/ADHD, heavy metal toxicity, and more.
For years I confused Essential Oils with Aroma Therapy but they are quite different. Aroma therapy are oils are inhaled into the lungs and offer both psychological and physical benefits, they can stimulate the brain and trigger reactions with naturally occurring chemicals. A common one most people use is eucalyptus for congestion.
Essential Oils that are intended to be applied to the skin and can be absorbed into the blood stream. These oils are powerful and concentrated so they are diluted with “carriers” like cold press oils, sweet almond and apricot kernel oil. For those looking for a safe and effective remedy they are worth looking into.
Why, why, why are so many government workers rude? I’ve pondered this question all my life but especially during my 26 years as a disability advocate. I experienced people who conquered obstacles so difficult that the impossibility of it was stunning. They came in with pride not regrets of their condition because they had beat the prognosis. Then these same beautiful souls would get humiliated, ignored and embarrassed by some worker at social security, Medicaid or food stamp office as if they were slackers and loafers instead of incredibility courageous and independent. Why would anyone want to disenfranchise another?
There is no satisfactory avenue to complain about staff. Their jobs are very secure as they are protected under the Federal Government Employee’s Union. It is almost impossible to get fired as long as they perform the essential functions of the job which is correct and timely paperwork and does not include politeness. Performance reviews are based on job duties alone and merely being rude to a citizen needing help apparently doesn’t qualify as dereliction of duty. Essentially you’re in for life unless you want to quit.
There is absolutely no incentive to treat people like human beings. In the private business sector these individuals would not last a day. You wonder if these civil workers are products of lower upbringing and enjoy their temporary power over someone who doesn’t understand the overly complicated system.
There needs to be some drastic changes to a system that encourages efficiency over empathy. The government needs to hold their staff to a higher standard and eliminate the “us vs them” mentality. There are many good staff in these government offices also but they are overshadowed by the ugliness of their co-workers and suffer the same reputation they don’t deserve.
A few things you can do are let the supervisor know how you appreciated a good staff. Complaints never go anywhere but compliments do. For bad situations get in touch with your U. S. Congressmen’s office. Helping constituents cut through red tape is the kind of stuff that makes happy voters.
Seniors traditionally are uncomfortable with change. They resent products and services disappearing and morphing into newer versions or eliminated altogether. For this group it also comes at a time when their synapses might not fire as quickly, memory is becoming harder to retain and even focus takes more effort. The Baby Boomers have been using technology for the last 30 years but did not grow up with it so learning curves are difficult the new improved is relentless. Many of us didn’t even have TV’s during our early elementary school years. Our learning curves involved how to work physical things like bicycles, swimming the breast stroke, skating, sports or creative arts.
Life moves onward so fast now. Like being on a really fast merry-go-round things past by in a blur but as it slows down periodically you begin to recognize the landscape and all of a sudden you notice things are missing since the last time you slowed down enough to notice. There are no pay phones, big blue mail boxes sitting on corners, VHS rental stores, paper maps or full service gas stations to mention a few and on their way out is land lines, CD’s, music stores, small bookstores, classified ads, cameras that use film, wrist watches, yellow pages and DVD players.
There are many I did not get around to mentioning that have already been phased out and much more in the process right now. However, there is an upside to this ever moving, ever changing, momentum of progress. New technology has and will continue to open doors of freedom for all ages. The ability to multi task well into the golden years is made possible by cell phones, web search options and wireless design. Being older or disabled is no longer confining because of the safety of cell phones to stay in contact. As they say “knowledge is power” and web research gives you unlimited power. Entertainment is enjoyed through internet TV which can stream movies as well as offer closed captioning, hearing enhancement and visual settings for low vision.
Social media sites enable seniors to keep in touch with family no matter how distant and web cam opens yet more doors. In my opinion the time spent over coming frustration and fear in order to learn new technology is well worth it. It will literally set you free to enjoy life independently and on your own terms. If you want to age in place be sure to put cutting edge technology in that place. http://www.independence4ever.org
1991 & on –
Life now is all about “bucking up” and getting on with our lives. My daughter and her sister came home two months after I did. She is in complete remission. I can walk with crutches now but can only use my thumbs because of the contractures. I taught myself to drive wearing leg braces and finally kicked my ex out. I am apprehensive on my own in my condition but I have faith I’ve done the right thing. The kids and I are all together again and that will get me through anything. I know someone is still by me from the other side as I can feel the presence at times and when I am conflicted over a decision or direction I want to go the knowledge is there. It is not a voice like it was in the coma rather it’s like intuition only more persistent.
I trusted it whatever it was and knew something was waiting for me to fulfill. During the next year I learned to walk with a cane and do most everything with my hands even though they were still in contractures. We all licked our wounds physically and emotionally and counted our blessings. I knew it was time to move toward my destiny but did not know where that was. My old plan to return to Phoenix didn’t feel right anymore. Then one evening sitting with the kids on the pier watching the crashing waves smash the shore it came to me. We had relatives who lived in Missouri. I had only drove through the town one time but I could not shake the feel of urgency. It was like a divine decree.
There was no way I could ignore this powerful pull. So, I sold the RV dirt cheap and everything in it. I bought new tires for my old 79 Ford pick-up, filled it with gas, three kids, two cats, clothes and one TV and headed north. I understood this was my destiny and I would make it. Within a week we rented our first house in six years. We had finally come full circle. Money was very scarce with just social security disability and a little child support but we were free, together and alive. It was good to be with family again. We had been through so much that the struggle to survive now was nothing comparatively.
But, surely this was not what I was pulled here for. One morning while enjoying a strong cup of coffee that powerful tugging returned. I knew I had to go find a job. My family thought I was crazy with all my complicated disabilities but I could not deny it. I was apprehensive of course. My only transferrable skills was my mind and my life experience. Everything else was braced up, atrophied or contracted. Nevertheless, I trusted this direction of my destiny. I was afraid the job search itself would do me in let alone a forty hour work week but by now I knew how to push through my egos fear.
My second interview was with an organization called Southwest Center for Independent Living. I was hired with a hand written resume in my hand but had no idea why or what they even did. It all soon fell in place as I learned they empowered people with disabilities to live their dreams by removing barriers physically, attritional and mental. All the lessons I had overcome, the struggles, the despair, the determination are now going to be played forward.
I have just retired after 22 years of empowering so many people with disabilities to see their potential and their self-worth, a career I never dreamed of pursuing. It was the most rewarding thing I’ve ever done in my life. I wondered what I’m to do now with all those years of working in the disability field and the intertwining of my life experiences. I had entertained the idea about blogging because I have always loved to write but knew nothing about blogs. About six months before I retired I got an email out of the blue from a blogging site so I looked into it. I created anyoneteachone.com and here I am. I’m still playing it forward and hope I can until I cross back over.
Never give up your dreams, never believe in prognosis and believe with all your heart the enormous power you own when you acknowledge you’re potential.