- Diseases, Disorders & Conditions
When Catastrophic Illness Comes Knocking...part 1
As of this date, new cancer ravages my daughter's body...well, perhaps not 'new.' More, maybe that is it...
Being told this right before Thanksgiving and Christmas will not steal one moment from her Thanksgiving or Christmas celebration. For 14 years she has fought the cancers that have chosen to try to steal some part of her life...
She refuses to give up and give in. God is good...we pray for more healing.
My grandson..my heart sings when I see this sweet face...
And There is More....
Usually I do not 'share' my own hubs here as it is not considered in good taste and folks should be able to find my work as it shines like a beacon in the night :D :D :D ...
But it is so important to me and mine that you at least see this one, i am sharing it. And I am going to update it for those who have read it before in this first paragraph:
First, Phyllis Doyle, right here on HubPages had begun a thread a few weeks back to ask for prayers and positive energy; her act in doing that and the response that came is uplifting. And for that reason I wanted to say, Thank you Phyllis...again and again.
As the weeks have moved on the course of the cancer as well as the devastation to my daughter's heart especially have progressed. She has new cancer now. Again. Just when it seemed there was nowhere left in her body that she did not have it. And her heart is struggling to work even with a pacemaker. She will be having surgery hopefully to repair some damage very soon; the date is not set.
The cancer too that is new will possibly require surgery. Surgery for her is always problematic. She is on blood thinning shots each day as she is a candidate for stroke (she had had four) without them. The shots will stop a few days before the procedures which is a catch 22.
Surgery is a time when all can go well and usually does.
We remain hopeful that she will come out of the surgery (Ies) feeling better than ever.
Please join us and the many others to whom I have asked to join us in prayer not just for my girl (who will be celebrating her 43rd birthday in May) who face terminal illness and all that it means to do so.
Positive energy too please is welcome.
And know that I send to each of you, especially those of you who have walked this journey with us, Angels and love and blessings, from my heart to yours.
Keep on Keeping On
My grandson was relatively 'well' for a couple of years. His meds had been reduced some and he had fewer severe outbreaks of the painful lesions on his body.
In the last three months the disease has wrapped itself around him in a full onslaught. He is now on heavy chemo again and is fighting respiratory after respiratory illness. He also has had a very serious ear infection and it is determined he will have surgery due to a ruptured eardrum.
Through it all, he remains undefeated. He has been in bed more than he has been out of it recently but he brushes it off and moves on. Somewhere in these writings, I believe I have told you that he has taught us how to live. And, I reaffirm that. He takes what comes but does not let it pull him down. He is a blessing to our lives in so many ways.
This story is not a new one. Sadly it is one that could have been written by any one of thousands of grandmothers, mothers , daughters, brothers, cousins, friends--across our nation, across the continents of the world. Sadly cancer and other catastrophic illnesses are not selective. They will knock on any door, an unwelcome interloper, who will try to turn lives inside out and rip them apart.
It is a gut-wrenching, pain-filled experience for all involved. These illnesses are about the entire family. Not one family member will go untouched by them.
There is a way to survive. It is a choice. You can choose to LIVE. Or, you can choose to give up and give in. This is the story of a family who has chosen to do the latter.
This is a story for everyone who has chosen to do as we have done. And for all of you still struggling to try to do so, it is about HOPE. Every day your loved ones are on the planet, there is hope. Keep the hope alive by living each day.
Do not miss one minute of any day.
Two precious children together
From the time my oldest grandson was about one and one half years of age, he began to have repeated bouts of respiratory infections which were severe enough to have him admitted to the hospital. While he was in the hospital, he was exposed to other diseases and became sicker rather than well. It became a vicious cycle.He became sick; we took him to the doctor. The doctor put him in the hospital; he became sicker. It was scary and frustrating and each time, he was sicker than any time in the past.
It was not till about two and one half years later that a doctor finally diagnosed his illness Writing these words is a cathartic experience for me. My hope is that all who read this will find a voice given to their thoughts as they have struggled and continue to struggle with diseases that can take over an individual's life and a family's life.
My daughter recently posted this on facebook for me. Wow, the tears flowed.
Pamela99 has written a very detailed explanation of fibromyalgia which I am incluidng here for you to read. It is very well researched and explains many questions you may have. Thank you, Pamela.
My daughter was diagnosed with this and was told it was from the intense chemo she received.
Is your family facing a difficult disease ?
The illness that has taken hold of my eldest grandson is Behçhets Syndrome. That means that the one afflicted with this malady is virtually rendered defenseless. What comes together to comprise this malady is a conglomerate of so many unpredictable and unusual behaviors within a body that medical professionals themselves often do not recognize it and when they do, at this time, are a loss as to how to proceed. It presents and grows in each person differently making it elusive and difficult to understand.
The chronic inflammation that occurs affects the blood vessels throughout the body (vasculitis). Researchers have found that the body will attack its own immune system by mistake.
This is a very simplistic description of a very complex, little understood syndrome. Because the indicators are all over the place, and, because it is rare, it is difficult to diagnose. It does not affect everyone the same way. My grandson is still living with it and still is on treatment (chemo) for it.
The cause of this syndrome is still unknown.
Fear does creep in sometimes
My precious grandson is eighteen now. That is significant and cause for celebration as his Momma and I were told so many times that he would not survive for long. He will never be 6. He will never be 8. He surely will never be 13.
We lived in our minds, way back in those dark and haunted places, with an unwanted fear. But only as a distant fear, tucked away not intruding most days.
We were determined to L I V E and the boy taught us how as you will discover throughout this journey with us. Some of you already are experiencing this as your family member is showing you the way.
A bleak outlook
Doctors have told us repeatedly throughout these remarkable, sometimes tumultuous years:
- He will probably die when he is very young.
- Straightforward, cut and dried, just like that.
- The hard, cold realities of life spat out in a single sentence.
- His arthritis will become debilitating,
- He will be wheelchair bound
- He will need a new liver
- He has congestive heart failure
- He has early Alzheimer's
- His permanent teeth will fall out.
- He will go blind if he lives long enough
- His life will be very short
- Do you want Hospice?
His life will be short…His life will be short…His life will be short, echoing, resounding unwelcome words. Frightening, strangling us.
Heaven is Here
Recently I read in one day...Heaven is Here...which is the account of Stehanie Nielson who almost lost her life to burns she sustained in an airplane crash. She details the frightening journey she unwillingly embarked on but survived and lives today.
It is another story of courage, of not giving up, up believing it is worth to do whatever it takes to survive. You will not be able to put it down as you read page after page describing each step of the way to recovery. It gives you hope even in your darkest hours.
Rise Every Time
“Our greatest glory is not in never failing, but in rising every time we fall.” Confucius
So many Angels in the middle of the torment
Hearing those words cautioning us of days to come that we would find unbearable, made us hug on tight to every minute we could squeeze out of each day.
We know that we are told these things by his doctors and other health care providers because of what the repercussions might be if they did not. We too wanted candor, straight up, honest answers. You cannot face your demons if you do not know what they are.
“You want the truth?“
“Here it is! In your face!" Not said that way, in those words...but rather an explanation of what they thought the progression of the syndrome would be and what they thought the prognosis would be.
Would we in our darkest hour come back and say “why didn’t you tell us? You knew? And you didn’t tell us?"
The truth comes from them. Or what they know to be the truth comes from them. But the truth is, no human on this planet really knows, do they?
One thing we know for sure is that we (and all who care about him and about us) have prayed him here all these years so we know that God’s plan has not been fulfilled for his life, at this time.
Angels have followed us for years. When I went to work in Marion County Florida I found myself in the middle of a sea of Angels at East Marion Elementary School. My East Marion family has prayed with us and for us and over us for many years.It has made so much difference. These Angels helped us financially too. When we struggled, they were there every step of the way, helping us with money to pay bills that would have gone unpaid. Out of this whole journey so many blessings have come.
Our doctors tell us these things that we do not want to hear because they must. Most have done it in such a way that we feel not the sting of those frightening pronouncements. At first. It takes a while to sink in before it reaches the inner recesses of our being, taking hold and grabbing our very life.
Be it understood that our experiences with most of those who care for this precious child have been positive ones because those who have cared for him are sensitive, compassionate people who seem to sense our mind’s need to know but our heart’s unwillingness to receive the finality of the words, the hopelessness, the uncertainty that they offer. They amend and revise their pronouncements periodically as well which is confusing and tormenting.
We refuse to listen to a hopeless pronouncement because we know about HOPE.
It has become our mantra and we have eagerly shared our mantra with the world. So, despite what they say, despite the caution engendered by them, each day we have faced whatever new situation arose and carried on.
A New Brother to Love
And, clarifying again, is important. The cautionary, worst-case scenario explanation of the progression of his disease is the scientific part of being in the medical profession. It is the scientific process we learned in school in action:
«identify the problem
« ask questions (and, ask more questions, and continue to ask questions)
« Form a conclusion
In this way they can remove themselves from connecting too closely with the patient. And, hopefully, be more able to assess, diagnose, prescribe, revise, revisit, and reanalyze, acknowledge what did or did not work, and begin anew.
H O P E is life-sustaining
This whole embracing HOPE thing that we have done is not some head-in-the-sand mantra, not a Pollyanna mantra but an optimistic mantra, a belief that all things come together for a positive result somehow. And that HOPE is life sustaining…to a degree. It certainly offers the cushion against throwing one’s hands up and giving up and giving in.
When the scientists, the doctors research and use the scientific method and unsatisfactory results still occur, the disease continues to progress, answers elude those to whom we have gone for answers. QUESTIONS remain. The disease remains. The what-to-do-next remains. That is a certainty. Nothing is ever HOPE-less. Almost never.
The only time that something will become hopeless is when an individual gives over to that which is strangling, constricting, thwarting efforts to disentangle the pieces and makes sense of the challenge. Surrendering to it makes it hopeless.
Saying What We Feel to Each Other
My grandson is living with this rare disease, classed by his doctors in the cancer family, has been on the planet for almost two decades now. Many milestones have come and gone as we were told that he would never be six, surely never 13, and now....he is here. We have prayed him here all of these years. We meaning my daughter and myself and a whole group of family members and friends.
The day my daughter found out that her son was being classified as terminal left us shaken for a time.“That’s my son you are talking about!,' she said to the person on the other end of the phone. The words caught in her throat and on her tongue as they fell out..
“Oh, m’am, I am sorry. I thought you knew!”
After an uncomfortable few seconds which seemed like years, she disconnected the phone.We had been told things like this but to hear it , this way, gave it a finality we did not want to know or hear or believe.
And you know what ? It changed us in an instant. At that very moment we had an epiphany I guess some term it. That stuff we had clamored for was no longer of importance. The new dishes, the new bathroom rug, the new comforter none of those were where our values lay. Our relationships with each other shot in a second to the top of our list. We are living our bucket list not waiting for some day to arrive.
Our bucket list is probably far different from that of others as our list focuses on the simple pleasures of life: spending time with each other, doing and seeing and experiencing things together, saying the words we want to say to bring joy to each other's hearts.
His first birthday party
Another important change occurred that day. He was now allowed to go out into the world with no mask. He would now be exposed to the same germs that others are.
What’s the point? To shelter him and smother him so that he does not live? We thought not. And for first time, the doctors agreed. He has never attended public school because of his illness. When others were mildly ill with a cold, it is life threatening to him, often.
We had his first birthday party on his 11th birthday. We invited everyone that could be carried, could crawl, or could walk that we know
It was one of God’s most breathtaking days…..the sky was the blue that defies description, that ethereal other worldly blue that makes you drop your jaw in awe. There was a gentle breeze and the air was that warm that made you comfortable but not ‘fan’ hot---, bees buzzing but not stinging, ants crawling but not biting, the trees trembled as the birds serenaded us with amazing musical cantatas. It was one of those days that no matter how much time passes the memory of the feel of it, the sound of it, the smell of it, the taste of it, the sight of it will linger in your mind and in your soul forever...
My sister from Pennsylvania showed up out of the sky; I had no idea she would be here. It was so much fun to have her here. We have always been so close. And nephews and nieces from North Carolina and Tampa and Orlando came; and my eldest sister came from Orlando, too.
Give a party and they will come!
An Unwelcome Journey
On April 20, 2006, my daughter, numerous friends, her son, and I made the short trip from our home to the Appleton Museum in Ocala, Florida.
On this evening my daughter was among 20 who had been selected to be honored for their volunteer service. The accomplishments of all who were presented that evening were indeed worthy of praise and merit:
Hours turn into days, days into weeks, weeks into months, months into years as her service to an organization that was trying to help rid the planet of cancer and to help cancer patients increased year after year. It was empowering.
Unable to fix her little boy, she has set out on a personal journey to spread the word that cancer continues to ravage families as it eats its way through bodies, destroying one body at a time, creating upheaval one family at a time.
Cancer is a family disease.One person may be diagnosed in the family with it but from that point on every life in the family is affected. It is almost as if the others have it too. It is a journey that none would choose to take
Do you need someone to talk to about how you are feeling?
You do not need to face this alone. Whether you are the one who is ill or whether you are family members there are resources available that are probably very close to where you live.
Shands Hospital is only about 25 minutes from my town and Shands offers a number of support groups:
Support Groups for Shands:
If youu are not able to have someone help you locate a support group. There are resources available to assist you.
What does cancer look like?
Cancer looks well. Or, it looks horrid.
It does not have a LOOK. Look to the left and to the right and to the front and to the back of you. One of those people may have cancer. Most of them look just fine. That is only one way that it eats away at lives. Because even the sick person sees someone who looks healthy when they look in the mirror.
When the treatments start, with the legalized poisons, then the body and faces of those you love begin to change.
Often my grand boy looks so well, the picture of health and people will say, 'he looks so good. He must be doing much better.'
That may be the very day that we were up with him all night, petting him, feeding him droppers of liquid, doing whatever we could to make him comfortable…cancer does not have a LOOK.
So, by taking action, my daughter became empowered. She is making a difference one person at a time, one legislator at a time; unabashed about her courage to espouse her conviction that maybe we will conquer at least some of these cancers, her single voice resounded around Marion County. But she was not alone. Others were doing the same.
She was able to take her voice to Tallahassee to be heard before legislators there. One person at a time.
She continued to devote her life to the work of spreading the word that money is needed to research and find a cure. To find a cure for all of the catastrophic illnesses that enter lives, uninvited, unwanted, unwelcome.Until she could no longer do so.
Get up every day and LIVE
My grand boy has taught us how to live I cannot say that enough times. His courage in the face of the knowledge he will essentially miss his youth has been recognized, accepted, and, dealt with.
Just the other day my nephew that I cared for in summers when I was a youth in Virginia told my daughter “you probably don’t know this. But having our family come together at these birthday parties each year has caused a reconnection in family that did not exist for years. Those of us who were not in contact with each other have been in close contact since that first weekend. Even some who did not get to come to the party were touched by the reconnecting event'. The birthday party for a child who had never had one caused others to reach out and reconnect.
We do know this. This boy's life has a special purpose and meaning. The Lord is working through this child to make a difference in the lives of others in so many ways.
His attitude is: “So I really don’t feel great today, so what. I am going to live my life, get up every day, begin anew, face what comes, and get the most out of each moment" which he does. He has taught us to do the same.
We are so thankful for his presence in our lives. God has given us the most precious human to love and care for. We would not have missed one moment of this adventure!!! Would we have wanted it without the illness? For sure, but, we do not get to choose.
Learning How to Live
Each day holds the promise of better things. Yesterday is pressed into the wrinkles of our mind, to be revived and hugged tightly on a day when we need a special boost.
My grandson faces new struggles with his illness often. His lungs have been a source of much concern through the years. His meds have increased .Sores have reappeared which we have not seen for sometime.
Our resolve remains. Our resolve to provide for this young man the opportunities to be, just to be. Just as other families do, we make whatever provisions we need to for trips to the doctor and to the hospital to care for our loved ones.
We question what has been told to us so often throughout the years. Because one of the most frustrating parts of living with this syndrome is that he looks so well. Many times those we encounter say that to us. Often the very day someone is saying that to us is the day after a night when we have sat up all night with him. It is confusing to see this seemingly able bodied child be wracked with pain, denied the normalcy that most his age are afforded.
Despite it all, God has blessed us so. He is teaching us that living with this daily illness could be so much worse than it is. We learned that early on. Traveling to Shands, seeing those who were unable to speak, unable to navigate on their own, seeing those who were barely clinging to life put is all in to perspective for us.
He was in a wheelchair for several years but refused it after a while. He walks through the pain.
We knew and we know that we are blessed. We have often said that if we must wind up at some point carrying Jay around in our arms, we will do it.
Living with a long term illness like this does something to a life….to all of the lives connected to that individual. Priorities are so different………relationships are so different. What is valued soon becomes crystal clear. The coping with this monster that has selected your life to wreak its havoc upon is pretty close to the ultimate challenge.
Hopelessness occurs…….when you give up and gives in.
What does terminal mean?
That may seem to be a really dumb question. However it really is not.
Terminal suggests that whomever is diagnosed should pack up and say goodbye cause the bus taking them to the next life will be coming by soon.
It just ain't so.
Terminal means no cure. It means that the person will live until the illness has completely taken over the life of the person to whom that label has been given. A few months, a few years, longer.
With that knowledge, from our experience it is good to go ahead and plan what you want to happen in the event of your death. You should do that anyway. After that has been taken care of, get on with the business of living.
My child, my daughter, continues her fight as well. She was diagnosed 9 years ago with cancer which has spread throughout her body including to her brain. She was told five years later that the cancers are terminal.
She has had treatment after treatment, clinical trial after clinical trial. The worst was 18 months ago when the chemo almost killed her. She decided no more chemo. She has had some radiation as recently as two months ago.
She had gone off treatment before as it was literally killing her and not the tumors which have spread throughout her body. While she was off, she became pregnant with my now two year old grandson.
One of the most frightening times during the pregnancy was when was diagnosed with a blood clot in her heart and with PAD (peripheral artery disease). Virtually a ticking time bomb. She self-administers (actually my son-in-law gives her the injections) to help thin her blood and keep further clots from forming. She most recently had a stent put in her heart as she now has a inoperable tumor in an artery in her heart.
Many have questioned the wisdom of her getting pregnant. The precious grand boy who now is on the planet (and we were told neither she nor he would make it) makes every day brand new. There is no doubt that the little life that she gave birth to along with his brother are huge factors in why she is still walking around on the earth.
About the Tears
Do you wonder? Do we cry?
Oceans. There are several new oceans on the planet that we have created with our tears.
I did not say we do not cry. I did not say this is not painful.
We do cry and it is painful
We cry our oceans and then get on with the living. That is what it is all about---the living.
You can read part 2
Part two of this journey is at:
Cancer comes knocking
When cancer comes knocking part 3
Every family who faces cancer or a disease equally as catastropic has choices to make about how to live their lives No one can tell another how to live through the upheaval, the uncertainty that comes with such illness.
There are organizations that will help you. There are alternative pain relief techniques including relexology, massage, and biofeedback. Choose something that works for you.
Remember to find help for your children who may see the loved one who is suffering and need help to digest and sort through it. In your area, there are agencies that work specifically with children. If you need help ask your pastor, a family member, or a friend to help you. They are waiting to help.
If you need help with meal preparations and clean up, ask. You probably will not need to look very far. There are probably many who are waiting to love you through it.
All you need to do is ask.
It is a personal family journey. This is the first part of our journey.
There will be more hubs about this in days to follow.
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