Hope Reigns Supreme
And yet another wrinkle
By this time I am usually at the tiny Episcopal Church where I worship with a small but loving group of individuals. But today I am communing with God from home and perhaps later from a beach.
As I looked at the title of this article and at the quotes about hope, I still DO HOPE every single day that my precious Stephanie, Jay, and Heston Wayne will find the cure they so sorely need.
Over the years we have been told numerous, no....many many times....that Jay and Stef's time on the planet is very short so party on, party like a rock star. And yet 18 years later....they are both on the planet....and praise God for that.
HOPE has been and continues to be our constant companion....as we muddle through all that comes our way.
Last week my Stef had a massive dose of chemo as they are trying to quell the leukemia that has come on with a vengeance. Her body was already wracked with cancers in many areas and then this new dastardly invader came on board...not quite a year ago. For most of the time she has been 'ok'....as 'ok' as someone can be who has serious medical issues including a very weak heart and tumors too numerous to mention throughout her body. But she soldiers on because her baby boy Heston Wayne needs a match for a bone marrow transplant...
However a new wrinkle is evidencing itself now. The oncologist is telling her she has six months to one year left on the planet. Now....she has been told that countless times for over seventeen years so she laughs in the face of adversity, as we have heard said so many times before. (I shared this information with a precious person here on HubPages and her response was what I really needed to hear that day...and even now....she said ...'had they said she has two weeks to live that would have been very telling'...and that is true. So I needed to hear that and to process all of what has been told to her....at least they offered more time rather than less...does it make sense to you that I find some measure of peace in that?)
But......and yes there is always a but.....she feels different this time....so while we remain ever hopeful, I admit that I find this new 'timeline' if you will, daunting.
Don't get me wrong....I will not miss one single millisecond of any day trying to second guess the future but as her Momma, my heart is heavy at the implications of her early demise.
I don't know what else to say except to ask you to please send positive energy and good vibes and prayers and Angels her way and to her boys and her husband and if you have any left over, I wouldn't mind if you send a few my way. And know that they are returned to you.
*Look at her in the photo below....does she look sick ?? We have heard that so often...."she looks so good...he looks so good....they must be better or cured." This is pretty much what cancer has looked like for her most of her years. It is so deceiving...this horrid disease.
The Secrets she holds ...so well hidden in her photos
She is there even as she fights comforting her Little Man
Adversity will not get us down
Friday night, July 15, 2017, my grandson, Jay, called to tell me my daughter, Stephanie, was been taken to the ER by ambulance. Could I come over to help with baby? Of, course.
And she remained in the hospital a few days...only coming home because baby has surgery today and she had to be there.
The next few weeks were filled with clinic appointments and adjusting to her new normal.
She has been diagnosed with pancreatitis which is trending toward pancreatic cancer....NO ONE wants to hear those words. She has faced off with so many cancers ...this one is a biggie...but HOPE REIGNS.
She also is insulin resistant so is on another medication.
She has an upcoming surgery in which a new ICD is being implanted IF they determine that her heart is strong enough for the procedure. So, in a nutshell, more stuff is on her plate.
The capacity for hope is the most significant fact of life. It provides human beings with a sense of destination and the energy to get started.— Norman Cousins
What is all this talk about HOPE?
The answer to this question is a personal one that each of us will answer in our own way.
For my family and me, hope has brought us full circle through the many years of living with cancer and the devastation it causes.
With hope we begin each day being thankful that a new day has come and that we will make the most of those moments that now present themselves.
Hope is a promise of better things to come.
Jay with his Baby Brother
An Unwanted Odyssey....
About 17 years ago an unwanted odyssey began for our family that we would have never dreamed we would experience. And given the choice, one we would have rather not been a part of.
Those of you who have read my writings know that I have written about my daughter's and grandson's journey these many years with cancer.
To fully understand what has transpired it would be helpful if you read some of the hubs that I have attached to this one. These hubs will provide much background information for you.
... Hope means hoping when everything seems hopeless.— Gilbert K. Chesterton
Facing the Diagnosis
Over the years we have heard words we did not want to hear. Words we wanted to deny and ignore.
Words that made us want to cover our ears to block the sound of those piercing, cutting words.
We would hear that time was short for both my daughter and my grandson.
When my grandson Jay was first diagnosed, he was four. And we were told to prepare ourselves because he would never live to be six. Then it was nine. Surely he would never ever be 13. And, now we are so thankful. So very humbled. For in just a few short days, he turns 21!!!
My daughter was told so many times that she too would succumb to cancer sooner rather than later. As a matter of fact, she was told early on to 'party like a rock star' as she had not much time left on the planet. That was eleven years ago.
Can I just say how thankful we once again feel?
After that time, when my daughter would go in for further treatment or assessment, the doctor would often say, 'You know you really aren't supposed to be here, don't you?"
And she would smile and say, "But I AM."
More times than not, the doctor would reply, "It is nothing short of miraculous that you are!!"
Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.— Dale Carnegie
We Take Nothing for Granted
Jay, grandson who has climbed many mountains, today still has many physical issues and still has chemo.
When he has his chemo treatments, it lays him out for at least three days. And then he emerges, and soldiers on.
And we are so thankful.
Hope...right in front of us....
Hope Keeps Her Going
My daughter has had many low moments over the years. Times when her doctors gave dire predictions and cautioned us that she may not make it through 'this' treatment.
And as the cancers spread throughout her body, HOPE became our constant companion. That seems like a contradiction, doesn't it? But the more difficult things became, the greater our resolve to hold on to HOPE.
Fear had a way of trying to steal some moments but we all refused to allow that to happen.
That is not to say that we have not (do not) do what I call 'crashing and burning' from time to time. For a brief time, and I do mean brief, the reality of the horror of her physical condition and Jay's as well will wash over us and we allow tears to come and to flow.
And then we pick up our pieces and stow away the angst till the burden of it all becomes almost too much to stand and then we allow ourselves the briefest time to be human.
However, we do not live in a place of sadness or sorrow. We made an agreement to not let one moment of any day be lost by trying to second guess the past...no 'what ifs' are allowed.
We embrace each day and squeeze as much joy from each day as we possibly can.
These are a few of the articles written about our journey....reading them may offer hope to you ...
As was alluded to in the previous paragraph cancer has spread throughout Stef's body and the prognosis has always been grim. But Hope Reigns....
Giving up has never been an option. Through the pain, the nausea, the vomiting (even now}, balding head (which was such a small thing in the scheme of things), the bad news every time she went in for a check up..saying "I am defeated" has never been a choice.
Too much to live for...a son who lives on despite the prediction he would not, a baby (who has just turned 8 as is now a 'big boy' he says ) that was predicted would never make it on the planet, and a loving husband who has supported her and continues to even now.
And the baby is ill as I have shared.
No situation is ever HOPELESS unless we allow it to become that way.
Over the years the treatments (chemo, radiation, and clinical trial after clinical trial) have ravaged her already devastated body.
Her heart has been seriously damaged. She has had more than one IED (implantable electronic device) implanted to help cause her weakened heart to function in a way that would allow her, too, to soldier on.
Within the last year her heart has become more and more weak. She has much less energy, is tired most of the time, fatigues easily, and passes out ...too often.
The IED she has now is hooked to a telemetry system that alerts those who monitor her of an issue with her heart even when she is unaware something has happened.
Not Words We Wanted to Hear...
About six weeks ago, she received a call from her cardiologist early one morning asking her to come in and tell her of her visit to the ER in the wee hours of that same morning.
Stef replied that she had not gone to the ER---she had been sleeping.
Through telemetry her cardiologist had been given information that Stef had a heart attack. Thankfully it was not severe enough to waken her or to cause her demise.
However the doctor had her come in to her office and they had discussions about what is next.
One thing for sure is that another, much more serious heart attack is on the way. Not if, but when.
Plans were made to have a new IED put in but after further testing and evaluation it was determined that her heart is too weak for any type of surgery. That includes no more surgery to remove cancer ...surgeries that had been planned before this new wrinkle appeared.
Stef has always wanted complete candor and honesty from her doctors. So her cardiologist told her that she has no more than five years on 'this' heart. And she is not a candidate for a new heart obviously as she would not survive the surgery.
Stef, of course, smiled and said, "You all have been throwing numbers at me for seventeen years and I am still here." So once again, HOPE reigns.
So we live with this new wrinkle. And each day becomes even more precious.
There is one medication that could possibly help her but the side effects are extremely dangerous. Weighing the options is where she is right now with a decision about the medication.
I guess for anyone reading this the temptation is to say, "O, how sad. That poor family...how much can they bear."
But No, not at all. Stuff happens to every family, Unwanted, dreaded STUFF.
And like us, most families soldier on.
Life after all is about making choices. We can choose to make the proverbial lemonade when unwanted lemons appear. Or we can give up....we can say 'it is hopeless, what is the use?'
As for us, we have chosen to remain armored with HOPE and the belief that each new day is indeed a most precious gift and one to be treasured and lived to the fullest.
If you face catastrophic illness, know that trying to live 'down the road', embracing the 'what if's', wasting time asking 'why' is fruitless.
Find your courage and go forth. That is what we do. Easy? No, not at all.
But it has caused us to live our lives as we believe we always should have...in the present.
Reveling in the moments of the now rather than looking back or trying to see tomorrow.
Today is our reality and we are so thankful for it!!!!
HOPE does indeed REIGN.
If you need someone to share with about the challenges facing you, feel free to email me. I have NO answers, but sometimes just unloading is a great help.
My Stephanie....so exuberant as the race kicked off....
Heston Wayne Greeting Runners at the 5K fundraiser
Jay...looking O so serious at the 5K on March 30th for Heston Wayne
© 2016 Patricia Scott