I love the warrior class. By that I mean those individuals that I consider to be warriors. Warriors are those who find themselves having to defend themselves and others who are defenseless and unable to help. Warrior are also those that find themselves in a fight that they didn't ask to be involved with but they fight because they have no choice. They do it with great courage and strength of will and character. Sometimes, they are individuals that have taken up the cause of others at great expense and certain peril. Sometimes, they fight for themselves in order to survive. In my Facebook bio I have written the following concerning myself:
“A fan of warriors big and small. Defenders of freedom. Those who are brave in battles of their own”
So I love the military warrior class but I also love kids and people with special needs. As well, I love people and their stories when they show great courage and strength under the fire of life's circumstances. There is a warrior mentality that can often be displayed when a situation calls for that extra amount of drive needed to get through extreme challenges. You don't think about opting out. You just endure and move forward.
There can be nothing more terrifying, in my mind, than serving in a war zone, outside the wire of a Forward Operating Base. Regardless of how a person feels about war and the conflicts we have been involved in as of late, you have to have respect for the men and women that leave the safety of our way of life to put themselves in harms way. There is nothing like being a warrior in battle for your country. They put aside and suppress their fear in order to accomplish a goal and there is nothing like it.
There is however, a scene being played out in cities and suburbs that requires a person to “warrior on” and “do battle” against an enemy that confronts them. It takes place in hospitals and doctors offices. In homes and hospice facilities. Is this a stretch. Well I will leave it up to my readers to decide.
In a couple of my previous entries I talked about a man named Tommy. If you have been following along you already know about him. He is the son of one of my dearest Facebook friends, JoAnn Caudle. He, like my son Benjamin, was a special needs adult who functioned at a level much younger than his actual age. During chats with Joann, we discussed how similar Benjamin and Tommy were when it came to their personalities and habits. How funny they both were in the things they did. How much enjoyment we received from having them in our lives. Tommy, though, had some major health issues beyond what Benjamin has. He had an aneurysm that required immediate surgery. During the surgery, it was discovered that Tommy had cancer and that it was spreading throughout his internal organs. How terribly difficult! After consulting with the oncologist it was agreed upon that he could not endure the treatment for the cancer. Tommy was placed in hospice where he fought the cancer bravely. He battled hard and he exceeded expectations but eventually succumbed to the cancer and gained his wings.
I really felt for JoAnn and her family as they lost the special guy in their lives. It's possible that this could be us someday with our Benjamin. I was heartbroken for them but happy that Tommy was no longer in pain. I was sure that he was in a better place. JoAnn told me that he had been laid to rest with all his favorite stuffed animals including his favorite orange critter friend. When I pictured all that I could feel the tears well up in my eyes. It seemed so unfair that Tommy would suffer like he did, although he is now in a great place. When I look at how much we love Benjamin and how much he brings to our lives it makes me realize how greatly Tommy is missed by his family. Cancer really really SUCKS! Tommy was a warrior of a gentle kind. He fought valiantly and I have no doubt that he has received his reward.
I love little warriors that do battle with the monsters that make up childhood disease. A person's childhood is supposed to be filled with simple lessons and childlike fun and innocence. Their innocent unblemished appearance often give way to the scars created by the monsters these kids do battle with. They are not suppose to be filled with the stress that is involved in fighting a fatal or near-fatal disease. In other words, they should be free to enjoy the early years of life without enduring such things!
There has of course been a lot of progress made in the fight against cancer but there are still some very hideous forms of it that are not getting the attention that they should when it comes to finding a cure. I am new to all this but I have come to find out about a form of cancer, that is especially hideous, called DIPG. It affects mostly small children but adults can get it as well. It affects the brain stem where it becomes intertwined with healthy tissue. Because of the location of the cancer, it is at this time near impossible to treat. Their is no cure and the number of cases is climbing. When it comes to funding research nationally, less than 1% goes to DIPG and only 4% goes to all childhood cancers. More needs to be done. Don't you think?
I “stumbled” across Stephen Pecevich's profile on Facebook because he was a mutual friend of other people that I know who have accounts. I sent him a request for friendship and he accepted. Since that time I have come to know Stephen as a man who I would do well to emulate in my own life. Stephen, as I have observed him, is a gifted communicator through the way he writes, both in word and lyric. He also communicates through the example that he sets as a parent and a human being. Stephen is the parent of three attractive kids. His daughter's names are Sydni and Tari. He also has a son named Tristin. It's the love that exists between him and his children and the bond that he shares with his daughter Sydni that really shows me what type of man he is. Sensitive and caring while also being strong in his character. You see Sydni's life was greatly affected by the cancer she fought from and the results that ensued. She is a warrior of a different kind. Stephen describes the type of struggle that they have been through:
“On January 14, 2005, Sydni underwent a twelve hour brain operation in order to remove an aggressive form of brain cancer called an Immature Teritoma of the brain. Since 2005, Sydni has had 30 brain surgeries in total, she has endured through more than 40 surgical procedures, and she/we have spent approximately 1,000 days in the hospital for one reason or another.”
As a result, Sydni cannot walk or talk. She is feeding tube dependent and has cerebral palsy. Sydni has ongoing seizures and is classified as being spastic quadriplegic. Stephen states that she does have cognitive ability and a most vibrant personality. To me, that's easy to see. She is darling!
Sydni's smile is infectious and I love the ways her face beams when she is looking at Stephen. The pictures that he shares easily portray the love that exists between Sydni and himself. Stephen's life was forever changed by the circumstances that confronted him in his daughter's situation. On a day in March of 2005 when Sydni's survival looked almost hopeless Stephen made a promise to Sydni before God. He describes the scene like this:
“You see, that was the day that changed the course, and perspective, of my life. I now saw the world through altered eyes. For on that fateful day (amidst my extreme heartbreak and gut-wrenching fear … whilst I was cradling Sydni in Room 906 at Children’s Hospital Boston) I whispered in her ear and promised my daughter that if she would just give me an opportunity to be a father; that’s all I asked for – simply the chance to be a loving Dad to her – then I avowed before God in that very hospital room to love her no matter where the fates may take us. I gave my word that, if need be, I would be my daughter’s legs to walk, her eyes to see and her hands to eat.”
And so what appears to be an inseparable bond between Stephen and his daughter was cemented in the circumstances of the battle created by her cancer and subsequent disabilities. Stephan refers to Sydni as his “Earth Angel”. That she is one is easily recognizable by looking at her photos.
I am sharing the link that will take you to the entire article entitled A Father's Promise, so that you can read it in it's entirety:
You might want to keep some tissues handy ladies. If you're all out, you can borrow some of mine!
In the article Stephen says, “…...As the calendar of life continues on, the innocence and purity within each one of Sydni’s smiles reminds me every single day that, despite the all too often stumbling blocks that I have now become accustomed to, life doesn’t have to be picture perfect in order to be experienced as a most magnificent journey!”
Sydni is a precious warrior and Stephen is a warrior father. I look forward to continuing to follow Stephen and his family in their remarkable journey.
I was treated for Hodgkin's Disease when I was 26 years old. The year was 1986. Hodgkin's Disease is a form of cancer that affects the lymph nodes and it spreads to different areas of the body via the lymph channels that run throughout a person's body along with the cardiovascular system. The stage of the cancer is determined by, of course, the distance the cancer has traveled. I discovered lumps on both sides of my neck while I was shaving and decided to go to the doctor. A biopsy was done and it came back positive. The good news was that even back in the 80s, treatment for Hodgkin's had an 80% success
rate. That was good to hear but that would also say that not everyone with this form of cancer makes it. In fact, a friend would tell me that he had lost a family member to the disease.
I had a bone marrow sample taken (that was fun!) and lots of blood work done. I had various tests/procedures done and I had an operation in my abdomen performed to make sure that the cancer had not spread to that area. After all the testing was completed it was determined that the cancer was only in my neck and sternum and therefore I was only at stage II of the disease. So I was treated with two 30 day rounds of radiation. One in my neck and chest area and the second one was follow up radiation in my abdomen. I was young and strong and the side affects were minimal. Thirty-one years later and I am still here. I have had a couple of scares since then and the radiation that I received has had an impact on my total health. However, like most survivors, I am thankful for the additional time I have had on this planet. I got off easy, but there is somebody I know that is in the process of winning a much larger battle.
Stacy Hurt is a 46 year old wife and mother of two boys. She lives in Pennsylvania with her husband Drew and her sons, Griffin (age 13) and Emmett (age 11). She is a special needs parents as her youngest son Emmett has a rare chromosomal abnormality. It is one of only three known cases in the world, so his "syndrome" does not have a name. Stacy was a career woman as well, holding a double Master's degree. She worked in advanced positions that are related to the medical and pharmaceutical fields. If being busy with a career and family was not enough, she also had to care for her son Emmett as he is totally dependent on others for help in every facet of life. She also took the time it takes to maintain her physical fitness. She's athletic.
Stacy's busy life was interrupted by the news that she had cancer. She Had been experiencing pain but initially put off seeing a doctor thinking that she had irritable bowel syndrome (IBS) or internal hemorrhoids. The pain became too much to bare so she sought out her physician. A colonoscopy revealed the most shocking and most unexpected horror imaginable: Stacy had a tumor inside of her so large that a scope could not get around it. A subsequent scan revealed cancer in her liver, 5 spots on her lungs, and 19 lymph nodes. Stacy was diagnosed with Stage IV Colo-rectal cancer on her 44th birthday, September 17th, 2014. She was given a 10% chance to survive 5 years and a treatment plan which included chemotherapy, radiation and ultimately surgery ONLY IF she responded, which was a 50/50 shot in itself. There is more to the story and it includes a mistake in surgery which caused Stacy to lose half her blood volume. She fought for her life in ICU for a week after a 2nd five-hour surgery was performed.
Colon cancer is normally diagnosed in people over fifty years old but this attractive and athletic lady in her 40s was forced to fight a battle that she would have never imagined. Can you imagine the struggle of having to endure an aggressive treatment plan such as this all the while maintaining a household and caring for your family? Stacy has had a lot of help from friends and family along the way.
I personally can remember what it was like to go through radiation therapy for cancer. I was treated for Hodgkin's at Grossmont hospital in San Diego California. I remember that as I would approach the stop light right before the hospital each day, my stomach would become nauseous. It was however, not that difficult. I can imagine the feeling that one experiences when they have to go through a highly aggressive course of cancer treatments. Stacy has endured over 40 treatments of chemotherapy alone so far.
The very good news is that Stacy was declared NED (No Evidence of Disease) in March of 2016. Stacy continues maintenance chemotherapy for life and receives treatments every 3 weeks. Stacy's bio states concerning her victory:
“She credits her faith, family, friends, positive attitude, and integrative oncology modalities for her remarkable recovery.”
Stacy is a WARRIOR!! She is the ultimate inspirational character. She is extremely strong willed and has shown great courage and determination under fire. She has, I'm sure, had her share of very rough days but she remains positive and is an example for any person going through a difficult struggle!
I am sure that she is a life coach and a mentor to many even if just by her example. Stacy is a rock star to many, including myself!
Here is the Web address to Stacy's public Facebook page:
I stand with complete respect and admiration towards the men and women who serve in our nations armed forces. Especially those who have traveled to distant lands to put themselves in harms way. It may seem inappropriate to some to draw a comparison to those who fight a different kind of battle here on the home front. It cannot be denied though that disease is often times the enemy. It does not discriminate based on age, gender, or place of origin. Fighting the battle it creates requires strength, stamina, and courage. I have given you some examples of people that I consider to be of the warrior class of individuals. As for me, I am just happy to be here so that I can share their examples with you. Thanks for taking the time to read my blog. I SO appreciate you for doing so!
Is it them or is it us? Is it the feelings that they produce in us or is it that there is something truly special about them? I think that the answer has to be all of the above. It is them, but they also do something to us. Once you give a little piece of your heart to these kids and their families, they come close to taking all of it. Let it happen!
I would like to welcome to my blog Sanfilippo families, as well as, families in other MPS communities. I am grateful for every opportunity to write about those who battle an MPS disorder. This, of course, alongside their special children. This is a labor of love that is extended to each one of you! Scroll down to see MPS family titles.
Highlighting a previous blog that might interest you:
Forever Royal - The Final Version
One child in a family with a rare disease is a challenge. What if there is two? Heartbreak multiplied you pick up the cause and do your very best to make a difference. That is how a normal family becomes Forever Royal ...
Take the titles listed below and go to month and year listed in the archives.
January 2017 -
*The Story Between The Lines
February 2017 -
*I Know Just Where You Are
*My Kind Of Royalty
March 2017 -
*The Caring Type
*Face to face: A Fairy-tale
April 2017 -
*No Ordinary Love
*A Rare Friendship
May 2017 -
*Tyrell and The Rare Love Story
June 2017 -
*Seth and The Healing
July 2017 -
*Little John and The Reason
*Sands and The Scottish Princess
August 2017 -
*A Rare Kind of Devotion
*The Giggle Box
September 2017 -
*Sweet Montanna and The Status
October 2017 -
*The Blog About My Blog
November 2017 -
*Lydia, I Love You!
*Kayden And The Change In Plans
December 2017 -
*Those That Are Like Them
January 2018 -
*Nora Skye - I Know Just Where You Are
*Brock and The Priceless Memories
*Jamesy Boy and The Treatment
*The Priceless Princess From Beyond
*Forever Royal - Part One
*Forever Royal - Part Two
*That Kind of Love - Conner's Story
*What I See (She is a Butterfly)
*No Longer Alone - Kristiina's Story
*Things We've Talked About - Oscar's Story
*The Reason Why - Hannah's Story
*Kayla's Perfect Princess - Breanna's Story
*Where Do I Go From Here? - An information only blog
*Warriors Unaware - Mia and Kaleb
*Her Little Story
*Someone Like Raelynn
*Forever Royal - The Final Version
*Awfully Beautiful - The Life of Noah and Laine
*A Lifetime of Love - Tegen's Destiny
*Forever Beautiful - Gabi's Story
*The Miracle Baby - Amelia's Story
*Dylan's Life - A Small Town Story
*Princess Grace and the Challenges
*Anything for Tessa - Her Story
*Haley Bug's Battle - A Family Story
*Journey Unexpected - The Rich Family
Sanfilippo Syndrome and other MPS family titles -
*The Beautiful Light of Haidyn Grace
*Any Distance Traveled - Reagan's Story
*The Missing Someone - Kiernan's Story
Archives - Use title listed above with the applicable month and year.
Highlights from the beginning of gregster60.com -
Benjamin's Daddy - March and June of 2016 - Revised May 2017. Titled Benjamin's Daddy Revised.
My Fearless Adventure - April and May of 2016
A Different Type of Warrior - January 2017
Larry - February 2017