Saturday, February 9, 2019

Where has the time gone?

My how time has flown! It has been 6 years since he was first diagnosed and 5 (last summer) since his last treatment. The 3 month scans, x-rays, blood tests became every 6 months. The former adolescent is now a young man of 23, dealing with his own appointments and sharing his results (Cancer Free!!!) with US! We no longer live in fear, but a tiny bit of anticipation as the scan times comes around. 

As he concluded with his last set of scans, we were all set to celebrate the end of Drs. visits, poking needles and big machines! Well, the Doctors shared that "they" now are stretching the all clear to 10 years!! This is for sarcomas, they say, to make sure that survivors are not caught off guard by a relapse! Zack returned home with such disappointment and anger. He shares the news with us and as I begin to tear up, I remember his words early on in the treatments. "It"s not about you Mom, so don't cry!" I start to suck in the tears, he looks at me and says "Mom, I know what I said before, but one of us has to cry this time, and I'm so angry, I just can't!"  We hug, talk for awhile and I'm all of a sudden relieved.  Perhaps for a very selfish reason. For another 5 years we will know that he is OK, we will know that this will not return and I start to see it as preventative rather than a negative. Of course that's easy for me to say, but in all his wisdom Zack understands my feelings and accepts what must be. 

Where once his port was placed, now is a large tattoo with an octopus (which symbolizes regeneration). He plans on a treasure map and X marks the spot! He even had the surgeon removing the port to make another cut across the other! In fact that has been one of his passions, His entire back is covered as well as his arms. He is a walking piece of art! His other is his vehicles. He still has the "bumble bee" but it is now green and black, has a lift kit and new transmission thanks to Make a wish and generous donation of the Charlotte based Dodge dealership. 

He has had relationships, some good, some not so good. He is doing what any normal 23 year old would be doing. Trying to find joy in the simple things in life. A good job, someone that will love him and treat him right, and his biggest blessing other than continuing to be cancer free? His friends!! they are the same awesome young men that have been through the journey with him. They have an unbreakable bond and what more could a mother want for their child?

I am now signing off with best of wishes to all whom have followed our journey. Those who have loved and supported us and those in search of answers. I can be found on Facebook at One of the many faces of Ewing Sarcoma. Love, Peace, Healing wishes and Hugs!! Sabrina
Zack and Dad, Frank                                                

Zack and Me, Mom

Some of his many awesome friends and support system

The Bumble Bee no longer....

Zack with his Meme (grandmother)

Friday, April 22, 2016

Much needed update!

I see there are many new faces visiting our page. Welcome and please accept my apologies for not updating. When we are in the middle of a crisis, we focus on immediate communication to keep posted our friends, family and those deeply connected though the same commonality... Cancer, specifically from my page and blog, children's cancer and even more specific Ewing Sarcoma.

 June 2012 was the day our lives changed forever. Our son has remained cancer free since May 2013 which marked the end of his treatment.

To me at this stage of the game, it's hard to say we are blessed. I'm sure I used that word many times in my posts. But after everything and everyone we have met with this particular journey and many other of life's journeys, why would others who lost their battles be any less "blessed". My son, now 20, said to me the other day, " I'm the only cancer survivor out of five kids in our little town, why did I make it and not them?"  I responded with the only answer I knew, we were lucky and you aren't finished teaching in this world and learning what you must. My feelings may not be politically correct and are by no means intended to insult anyone, it is simply my view and I speak my truth from my heart.

As Zack continues to have, now, bi yearly tests, there is still the anxiety and subsequent relief at the results. There is still the memories of how our lives changed, for the better, as we are able to look back and realise how much he taught everyone around him about being strong, never feeling sorry for yourself, accepting what is and making the best of what life has to offer, good and bad. I am grateful that he is not yet done teaching us, and am eternally grateful for what lessons those young Angels have taught us about their own journeys.

Our journey still continues, as zack, medically won't be considered cancer free until the five year mark, however, in our hearts he was able, for whatever reason, to conquer the beast! And we are grateful!

Sunday, August 18, 2013

Three Month Scans....

Zack and Angie,
One of our fav nurses
The time has come, Zack's three month scans. To most that means nothing, to us, it means constant anxiety as to whether "IT" has returned. I keep repeating Moms words, "it hasn't been there since the tumor was removed". Was I trying to convince myself or being positive or simply stating facts. It didn't matter, that was the only hope I could hang onto. 

We began at the SECU, childrens cancer center. This would be the first time the staff would see Zack since the end of treatment. Everyone is excited to see him and commenting on his growing hair and beard. They are thrilled to see how good he looks, how much color he has. He remarks that he has been working outside with his Dad almost every day, so with that comes the tan.  Angie questions him about his left shoulder which is severely bruised.  He laughs and says "me and one of my friends had a lickin contest, we called it a draw." Angie, who has always been a tell it like it is personality (which I love), yells at him and reminds him of everything he has just gone through. "You can't do that to your body, you have had a blood clot and this could cause another one!!! dummy!!!!" She then gives him a great big hug and tells him he better start taking care of himself or SHE will do it for him!! I explain that we did the very same thing after we saw this, but am glad she too is letting him have it! 

They draw his blood and notice that his liver counts are up. The doctor comes in and asks if he has been drinking? He replies with "just a couple of beers..then whispers and a little bit of shine."   She looks at me and I explain that if we tell our kids no, they are going to do it anyway, at least this way, he tells us what he is doing and we (hopefully) have a little bit of control.. Judge is you will.  She too has a teenager (Zack will be 18 in a couple of months) and understands this theory, however, she explains that the Chemo is still in his system and could have caused some damage to the liver, therefore he really shouldn't be drinking. Maybe a beer every now and then, but they really need to see his levels without alcohol. We both got more of an education, and having not realized this, he decides to be more responsible. She also explains the need to continue taking the Septra, which is an antibiotic. She explains that his immune system is still in healing mode and he is susceptible to pneumonia which could be life threatening. Back to reality!!! Just when you think you can breath again, there is still so much to learn of this diagnosis and  the cure. 

We leave there with his counts in good shape. We are expected at the Reuters Children Center for x-rays and MRI.
"play" MRI 
As we enter, there is new paperwork to fill out, new insurance information to present. It has been three months, but all the faces are familiar as is the building.  First the x-rays are done. This is to check his chest for any sign of the disease . Once those are completed, we move to another section for the MRI. There is an addition to the room, a small mock MRI where the table top moves and children can actually lay on it to see what it's like in preparation for their tests. Zack is called back. The nurse remembers us and quickly mentions he must stop growing or he won't fit on the equipment any more. Once I get settled into my chair, ipad on with a movie, I realize that this is more emotionally draining than expected. It doesn't take long before I'm sound asleep. I have read on my new friends support FB support page for Ewings this is not uncommon. You literally live from one set of scans to the next.  It takes about three hours for all the scans to finish. We finally get out and grab some lunch and head back home. Me for work and Zack to hang out with his friends. 

It was only a couple of hours later while still at work, when we received THE call!!! "Hey Sabrina, everything is crystal clear, no sign of scar tissue, cancer, nothing is showing up!!" Did I already know this? In my heart yes, but in my mind? I start to cry with relief. I call Zack, Frank, Mom and later in the day touch base with Moms best friend (Aunt) Lee. I have made it a point to call her during each milestone, as Lee has been another one of my strong supporters through my at times crazy life. Now, everyone knows the good news. We are all too aware (again) at the path this journey is taking us, as we live our "normal" life in between scans. 
Zack has begun College. He is going to the local Community College to study automotive and is so excited. He has been working (as usual) on his truck, my car and Franks trailer (as proof in pictures). He has attended so many bonfires and pool parties we lost count. 
Having had a great summer with his friends and ready for school. It hasn't taken him long to get back into the swing of life. So, as he starts his new schedule with school and trying to find a part time job, we take everything one day at a time. There are some days I don't even think about it, okay, so I still think about it every day, but maybe not every minute. I can actually go a couple of hours without thinking about it.

Now, when people ask how he is doing, I can gladly say "scans continue to be clear!!!" 

Monday, July 29, 2013

Our Monthly photo album................

View of the lake

Typical teenager....

Danger, 300 foot dam ahead!!! I didn't dare!!!

Kayaking with Kelly at Cascade Lake, July 26

Fishing (well sitting, while he fished) with Frank

At our little pond, below the house

And... he caught one!!!

Garrett aka"Cookie aka Biscuit and Jelly aka Zack"

Meme, Zack and  Garrett... Biscuit (Cookie)

View of Jekyll Island from St. Simmons light house

Garrett at top of light house

Boys being boys, Zack flipping Garrett

Add caption

Meme with "the boys"

Chilling at Jekyll Island Petrified forest

Zack, the poser

Garrett, "I made it!!"

The "thinker" OR "I'm so cool!!!"

Best friends!!!

"Say hello to my little friend!"

Push me Mommy... please......

View from second floor room!! Breathtaking!!

Back to and from the Island...........

So it hits me…. I’m at lunch, my cell phone rings… there in BIG BOLD letters…. CANCER CENTER. I hadn’t REALLY forgotten about “them”. How could I? It’s always in the back of my head. “Three month scans next month,” but until that phone rang, it wasn’t a reality. It was just on my to do list. NOW, it’s Leena calling to schedule the scans. Partially freaked out, I tell her now is not a good time, I will call her tomorrow. I'm not ready to do this, I've just had a wonderfully, peaceful weekend camping and kayaking with my girlfriend who visited from Tennessee and I don't want to be jarred back into reality just yet. What difference is one day going to make.

As you can tell, the blogging has slowed way down. We have been living our lives, as if every day were out last.  Mom, Zack, his friend Garret and I were fortunate enough to make a trip just after July 4th to Jekyll Island, GA. A gift, mom said from “someone”, she is never allowed to share whom. Grateful and eager to get away from the weeks of thunder storms and constant rain, I jump at it. Frank was unable to go as he has several contracts, for which we are equally grateful. I rent a larger car for the trip, as the two “boys” are 17, but each over 6 feet tall. To say we had a blast is an understatement. Mom and I haven’t seen Zack this funny and relaxed in a long time. Garrett (Biscuit to Zack’s Jelly) and Zack have known each other a long time. They have recently re connected through mutual friends. Both like to hunt, trap, fish, work on cars and of course girl watching is a constant with these two.  

Mom could never remember his nickname so she started a new one “Cookie” is how we now address him. He took to it pretty quickly and didn’t seem to mind. With the two together it was an ongoing comedy. This was “Cookie’s” first trip to the ocean, so it was awesome to witness through another's eyes. He immediately fell in love with the ocean. He and Zack spent hours in the water, jumping, diving into and running away from the waves as they were breaking over their heads.  Mom stayed in the room most of the time, it was simply too hot and humid for her, but after two days I arranged for us to move upstairs for a better view of the ocean. All she wanted, was to be away on a break and see the ocean.

View of Mom from above
We would spend the days at the pool or ocean and a couple of times would run out in the early morning to visit the little shops on the Island. Our ultimate adventure was to climb 133 stairs to the top of the light house in nearby St. Simmons Island. This was something on my personal “bucket list”. Having had a fear of heights 

most of my adult life and having conquered it by zip lining two years ago, this was just another challenge I wanted to conquer.  Since the end of treatment, I challenge myself to do new adventures, some think to remind myself that I am alive; mostly I feel it’s to remind myself that I am grateful. Though Zack does have a fear of heights, he climbed to the top and stood at the doorway. That, was something I never would have been able to do before, with my fear, so I’m immensely proud of him for going that far. 
Panoramic View from Light house
Of course a trip to the Island is not complete without our usual fresh off the boat crab legs and shrimp lunch at the Warf. What was wonderful was Cookie announced he was taking us all out and wouldn’t hear no!! THIS from a 16 year old!! It was truly generous of him and we graciously accepted. We stayed a total of five nights, staying one night on the road. It was the perfect way to begin our summer, get plenty of sun, rest and fun all in one, not to mention more memories.

As I sat there on the beach, I couldn't help but remember where we were exactly a year ago. Zack was healing from the surgery that removed the tumor and we all we innocent of the future our life would hold. We "knew" it would be full of appointments, chemotherapy and radiation, whatever THAT meant. We simply guessed at how we would all handle this, how we would make it through the year. Little did we know, we would all become warriors in the fight of our lives. Here we are now. I'm not even sure how we have made it. Zack certainly has made the journey easier than I ever could have at his age. His strength, determination and total lack of self pity has taught many of us a lesson. We have all changed and for the better. Anyone that has come in contact with him, can't help but change. Yes, he has had moments of despair and anger, but when looking at the big picture, he stood strong and in spite of some of the obstacles throughout the year and the many changes he was forced to endure, he made us all proud to be with him.

It's hard to stay in that dark place. He has been cancer free since the removal of the tumor. In many cases, it returns, even during treatment. His has not! Many children have lost their lives this past year to this horrible type of cancer. Many more were diagnosed, with little hope, and yet there were equal amounts of NED (No evidence of disease) and celebrations across the globe. Having become connected with a few intimate sites involving Ewings Sarcoma, we become a unit, a family of Heroes, Warriors and Angels.  Did I ever see myself and my family in this light? No, never, but I am a better person for having this experience. 

The little pleasures mean so much more. Even to Zack, who still is running 1000 miles an hour. After returning from the Island, he has been going to more movies, swimming, hanging out at bonfires with his friends, starting his training at Rescue Squad, working on trucks, "chasing" girls. He is back to working at least three days with Frank and though it's not his perfect idea of a job, he loves the paychecks and what they can afford him. We see him less and less, as he returns home at 10, 11 and when he can really push the envelope, midnight. He reminds us that he will soon be 18 and we calmly remind him of the cost of living away from home and the fact that there are still rules to follow. With the rolling of his eyes he says, "I guess I can take it two more years". Oh the memories THAT brings back to when I was his age!!!

It's breathtaking to witness him coming back to life. His eyebrows full and brushy, his eyelashes the envy of every young girl and woman who would love to have half the fullness and length from a bottle of mascara. His hair is returning with a light blonde color, feeling like a babies hair, so soft to the touch, you can't stop "petting" him. 

He is in the works with Make a Wish to have his truck painted, detailed, new tires and rims and a "lift". Which pretty much means it is going to be higher than it currently is. He is so excited, he can't wait! He starts school in a couple of weeks with a full course load. He is anxious, but since having taken and passed his math entrance test, he's more secure in returning to school. So far all of his classes involve automotive, but the lady who signed him up, didn't realize he was getting his Associates, so that may change a bit. 

Well, having returned from the Island, the lake and any other place I could hide out, tomorrow is another day. I WILL call the Cancer Center, schedule his three month scans and KNOW that everything is going to be just fine!!!! Right?