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How One Family Lives With a Terminal Diagnosis
My Sweet Girl (October 2015)...Readying for a Steampunk Event
Stephanie and Her Hunnie Bunnie
Stephanie with Little Heston
Asking for Positive Energy and Good Thoughts
For those of you who have followed the journey my daughter and grandson have taken over the years, I am first of all, thankful, because you have helped to lift them up.
And for those of you who have cancer or other catastrophic illness in your family, you know, all too well, the roller coaster ride it can be.
For most of my grandson's 20 years he has fought to stay on the planet and continues to today. He is presently awaiting new rounds of chemo.
My daughter has fought multiple cancers for 14 years. For many of those years she has been told that she really 'shouldn't be here', that she has defied the odds ...for the cancer has metastasized numerous times and she has rallied each time. This scourge has taken a heavy toll on her body. She is in a great deal of pain almost daily, her heart works furiously to try to provide the needs for her body, and her little body is ravaged with MS (she is told a side effect, if you will, of the chemo she has had so many times).
She has had surgeries, chemo after chemo, radiation, you name it. The last rounds of chemo almost killed her so she vowed never to take it again...but of course, you (almost) really never say never when it comes to a possible HOPE for ending the scourge.).
Now the cancer which has been brewing all of these years has awakened again like the sleeping beast that lurks under the mountain. It has just been waiting to rear its ugly head and claim victory.
Those of you have read our journey know that one reason my girl is on the planet is that she has kept positive thoughts every single day; she has refused to give up and give in.
She gets up every single day and faces the day, walking through the pain, because that is what we do in our family. She has her own precious boys, Heston Wayne, 5, and Jay, who will be 21 very soon, and she has a husband who brings her joy as she brings it to him, each day.
So getting up and LIVING each day is a no-brainer...she does it because she has a hunger for life and sharing her moments with all who come her way.
We are facing new and grave concerns at this time. So I am asking each of you who come to read to please send positive energy and prayers her way. But I also ask that when you do if you will please send the same to any family, anywhere on this planet, who needs to be uplifted. We are, after all, family...No man is an island, as John Donne said.
Thanking you kindly for sharing this new challenge with us.
I can count on one hand how many of my hubs I have shared but I am sharing this one hoping it will reach many.
One thing I do know is that the prayers and positive energy coupled with my Stephanie's resolve have helped her to rally each time.
"Someone should tell us, right at the start of our lives, that we are dying. Then we might live life to the limit, every minute of every day. Do it! I say. Whatever you want to do, do it now! There are only so many tomorrows.— Pope Paul VI
Five Years Ago
Learning to live with illness as part of our daily lives was a bit of a learning curve but it is the path we have taken.
If you have family members who are ill and have been ill for many years, you can relate to this. If you do not, you empathize and that empathy is welcome for sure. But it is difficult to wrap your mind around what it feels like.
In my immediate family there are two such family members, my eldest grandson and my daughter. At present my grandson is doing reasonably well and for that we are thankful.
Currently, my daughter who has spent the last ten years trying to stay on the planet is facing new and more invasive cancer. She has just been told it has spread once again. This weekend is her birthday and her doctors told her to enjoy it. Next week the plan as to how to proceed will be formulated.
Our mantra became and remains~~
Do not miss one minute of today. This day is what you have been given ....embrace every minute of it.
Say what is in your heart...never let the sun set on your anger.
Sometimes you do not get the chance to 'make things right.'
Two miracles---Momma and Baby....
So often we hear...."She looks so healthy....He looks so healthy..."
Please remember as you observe folks throughout the day...Cancer and many other catastrophic diseases does not have a certain LOOK.
Christmas Time 2013
Trying to control the tumors
Our mantra became and remains “Every single minute of every day is a gift. Do not miss one minute of today.”
Treatment after treatment, clinical trial after clinical trial has been used in an effort to stem the tide of this insidious cancer that seems to crave mastery of more areas of her body. Perhaps some of the treatments did some good but we believe that the legalized poison (chemo) that she has been subjected to has done perhaps more damage than good.
One doctor said to her initially, ten years ago, “You got this. You will beat this. You do not need to worry till it comes full circle…if it does.”
Well it did (come full circle). It would actually be easier to say where she does not have tumors than it would be say where she does not. And the reason this happened to her says something about the health care in our nation but that is another story for another time.
LIVING~~~Despite Frightening Prognosis
At this point she has not decided what course of treatment she will seek. And whatever she decides will be respected by each of us. She stopped treatment several times throughout this battle when she was so weak and unable to function that she was near death’s door.
Whatever decision she makes will be one that she chooses . She has tumors in other areas of her body that cannot be treated due to their location.
Her forty second birthday this weekend is a huge reason to celebrate.
. She was told seven years ago to get her affairs in order….and to party like a rock star. The doctors did not believe she would live but a few months at that time.
When she went in for blood work or a check up, the doctor would look at her and shake his head and say:
"You are not supposed to be here you know. “
She would just smile and say, “But I am.”
Februrary 2015...Reunited with a Special Cousin
Another New Day
Not for one moment does she take for granted the years on the planet she has been given.She has been an inspiration to so many of us.
She has gotten up each day with new resolve. Having one more new day to embrace and share her love and smiles and kindness with each of us who come in contact with her is what helps her overcome the pain and begin a new day.
She does have days when the pain tests her to the limits of her endurance. The pain is located in areas where no pain medications can reach. So she has learned to focus her thinking in other areas---sharing moments with both of her sons, taking care of her home and preparing meals for the family, doting on her Man, texting her friends and her Momma, or talking to her Momma over the fence.
One More Miracle
Pain Tries to Steal Her Days At Times
She has had some days when the pain won. She was so crippled by the pain, she would take some medication that would allow her to escape through sleep for a bit. On those days, her big son watches the little son or Nini (me) will take him to her house for a few hours. These times over the years have been very few and far between.
Why? The reason is simple. It is as simple as the reason she stopped chemo. She wants to enjoy the time with her family…she like the rest of us does not know how many moments have been assigned to her life. And she wants to be conscious and aware even if it means she is in pain.
For those of us who watch our loved ones in pain and facing one onslaught after another of new assaults on their bodies, it is a heart wrenching journey. Yes, it is. It is one that no one would ever take by choice.
Yesterday I said these words to my Stephanie....she has to walk this walk as she feels she must....
Asking for Another Miracle
What Can I Do?
There are times when I feel so powerless. I want to fix her. I want to make her pain leave her body. I want the cancer to miraculously be cured.
And yes, I do pray. And I have asked several times…Lord, I am asking for a miracle this time. And I do think along the way He has given us some of them too.
I pray daily for her pain to subside and I ask for her to be held tightly in His arms and protected.
And as her Momma my greatest wish is that she is no longer in pain--that some way to break the pain cycle be found.
She is on the planet. She has a baby son who will be four a few days after her birthday. She was told neither he nor she would survive his birth. And he did and she did. That seems like miracle enough to me.
Another gift we are so thankful for is that my eldest grandson who turned 19 a few months ago is ON THE PLANET. He has a terminal diagnosis as well and we were told he would not live past the age of six…and look at him now.
He is still sick and still has treatment intermittently but he is here and we are so blessed.
We Have Difficult Times Too...
A gift we received through this nightmare has been that we learned to live the way we should have lived all along----treasuring every moment of every day.
We have had some moments when things were not all peaches and cream. We have had times when we were extremely frustrated and angry and we yelled at each other and at the cancer…Really I think that needs to happen at times…you crash and burn and then you pick up the pieces and move forth.
Pretending it is not scary and frustrating and that it can make you angry solves nothing. However being stuck in the dark and scary place solves nothing either. Learning to address the feelings and recognizing that they exist has helped us to remain a bit sane through all of this.
Live with No Regrets
You may be surprised to know that we have never done is to question why this happened to our family.
There is no reason. Stuff happens. It is how you live (not exist) with this albatross around your neck that determines your life’s course.
Give up and give in or L I V E fully wholly and to the fullest extent possible.
I am not a psychologist or psychiatrist but I know some things.
And I know that missing today trying to second guess tomorrow will leave you trapped in the ‘shoulda’, woulda’, coulda’ trap….with regret being your constant companion.
Angels are on the Way
Your loved ones will not tire of hearing how loved they are by you.
Be sure to say what is in your heart to them.
For those of you that are walking a similar path to this one, my thoughts and prayers and many many many Angels are finding their way to you.
Precious Time with Your Loved Ones
Denying your emotional pain is a one way street as well.
Feel what you feel, address it, and move on.
How many times have you heard that life is too short….?? It is and it is so fragile and tomorrow is not promised.
Wrap yourself and your loved ones in today.
Treasure your loved ones and find the real meaning of life is not in things at all but in the precious moments you share with those you love.
Happy time with her love
What Choice Will You Make?
We get up each day and live our lives engaged in the seeming normalcy of most lives. We do the mundane things that are a part of living.
My girl will go to have a pedicure on Friday as one of her birthday presents…another ‘normal’ part of life.
These obstacles that have come our way have tried to rip the life out of us but we refused to let it ‘get us.’ Easy, no? Not ever.
But it is, after all, a life choice.
Find your peace in the face of adversity. Know that you will not be sorry that you faced demons that came into your life and would have stolen the precious minutes you are given.Otherwise you will miss so many moments you can never get back.
And then very simply LIVE.
We are not Alone
For us prayers and Angels still surround us. God is in the house. He is our strength. As I have said many times before---He carries us up over the most difficult times. We are not alone.
Other articles about my grandson and daughter and their journey are here on Hubpages: Look for them ….When Catastrophic Illness Comes Knocking part 1 When Cancer Comes Knocking part 2 When Cancer Comes Knocking part 3