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?

Monday, July 1, 2013

Surgery 101

It is exactly two weeks since we received the post treatment protocol. We had left the office resigned to leaving the port in until after the three month scans, which weren't until August. Zack wasn't thrilled, but understood the reasoning. He is healing and quickly. He has been able to work with both Frank and our neighbor, earning a weekly paycheck and feeling very much like the "it" guy as well he should! He keeps reminding us that after a year of physical limitations he can't wait for the port to be removed so he can move ahead with his plans.

On Tuesday he went with one of his friends who is a volunteer on the rescue squad and signed up. Through coincidence one of the Captains is my OB's nurse and was already expecting him after I shared his intentions of joining. I had explained the past year to her and with that knowledge she advised Zack of what training he could participate in and what he would have to wait for.  He returned home from the first meeting excited and immediately sat down filling out the paperwork. 

He went to the local community college, signed up and completed his placement tests. He scored well on everything but math and since it has been over two years since taking math, decided to retest after studying a bit. In typical bureaucratic fashion, he had to schedule a meeting to schedule the test. If I had my camera on me that exact moment when he explained this to me, the expression was priceless.  His plan is to go for two years and take all of the automotive courses graduating with his associates degree. He then wants to move on to Nashville, TN and go to Nashville Auto Diesel to complete his education.  We are so glad he is staying close to home for a couple more years as there is still a lot more scans to make it through and having him here will make it easier to monitor. 

We had a special guest from Swedin, our nephew Kahleb (brother Bob's son). Kahleb is five months younger than Zack is a high functioning Autistic and though we haven't seen him in over a year, it's as if we saw him last week. Zack took one of his friends with him to Hendersonville, picked up Kahleb and spent the day with him, showing him his favorite spots in Brevard, mainly the auto shop, the Tractor Supply and later took him to dinner with a couple of friends. Kahleb had such a great time he asked to come and spend a couple of days with Zack. The boys were invited to a bonfire at T-Dubs house and Zack was so excited to introduce his cousin to everyone. They were having such a great time they spent the night, sleeping in the back of the truck (Kahleb slept in the cab). The next day was spent going from one friends house to another. Zack has truly become the social butterfly.

Saturday we finally laid Franks father to rest. His ashes were placed next to his parents (his wishes) in a graveyard in Toxaway. It was a brief service, consisting of two songs from Shawn's Ipad and the burying of a solid brass urn I had purchased as a gift. Kahleb decided to come and found the whole thing very interesting. Once the ceremony was over the boys couldn't wait to go yet again to another bonfire. It was so special to see how much fun they had together and Kahleb wouldn't stop talking about his experiences and how he felt so comfortable around Zack and his friends. He tells me "Aunt Sabrina, you know I feel very safe when I'm with Zack, no one is going to mess with me or him!" Of course Zack loved that!!

Once Kahleb returned to spend the rest of his time with his maternal grandmother, it was life as usual. Zack was back at work as were we. Nancy and I had set a time to get together for pedicures, (a gift card I had been hanging on to since my Birthday in April). Zack and I prior arrangements to meet after and go to Hendersonville together. As Nancy and I are saying goodbye, Zack walks up, gives us both a hug and when Nancy asks how he is feeling, he gives his usual thumbs up. When she asks if he feels more like he did before the treatments, he points to the area where the port is and angrily says to me "I want this fu.....ing thing OUT MOM!!!" He turns to walk away as he waved goodbye to Nancy. As I get into the car, he apologizes for his tone and explains that "he just wants this all done, he wants to work out, train at the rescue squad and be normal!"  I totally understand and explain "message received","If you really want it out now, then we will get it done." I explain, again, that IF they do find anything with the three month scans he will have to have it re inserted. We all agree that he has been cancer free since the removal of the tumor, so the chances are quite good that the scans will continue to come out clear. On the way to town I make a few phone calls to arrange surgery for the following week.  This is actually going to work out better since his insurance changes on the 1st of July and we start with another deductible and out of pocket. 

The surgery was scheduled for Friday at 9 am. The week was spent with us all working. Zack got in as much of his normal activities as possible, knowing he wasn't going to able to do much for at least a week until the area healed. I received a call asking us to come in earlier, 6 am to be exact and still knowing we would have to get up and leave by 5 am, we were game. We arrived at an outpatient surgical center. Zack and I were the first to arrive, so we had all our paperwork cleared and were waiting for the rest of the staff to come in. As I am sitting there, looking around, I realize the room is filled with children. Most of them under the age of three. My curiosity gets the better of me and I ask a few of the parents, "tubes in ears" was the most common response. It was hard for me to keep quiet, but I did. Today was about Zack and I didn't feel like "preaching" to deaf ears (pardon the irony).  "My own nephew didn't have to have tubes put in his ears after several adjustments" would be my usual intro into Chiropractic discussions. But today, my energy is gone, my desire to do or think about anything or anyone but Zack was simply not there.

The nurse calls me over thinking I was having the surgery. She asks for my name,  I tell her Zack Fisher is here for the surgery. She looks me up and down and says "then why are YOU up here?" I simply say "because he is 17 years old and I'm his mother!" as she leans over her desk looking at Zack sitting in the chair by the window, she says "OH MY!!!, " We are called to the back and asked for him to put on the tie in the back gown. They end up bringing him one of the largest they have and bring him a surgeon's cap to wear as well.  Over and over again, the head nurse, anesthesiologist, aide to the surgeon, aide to the anesthesiologist and finally the surgeon all walk in. Each time, they ask the same questions. By the time the surgeon enters the room Zack looks up at him and says "Zachariah Fisher, I go by Zack, I graduated this year and am going into college for automotive, I'm having the port removed from my left side, no I'm not allergic to anything, yes this is my mother, yes I'm only 17, I know... I'm a big kid!" The surgeon looks at him, then me and says "Well alright then, see you in a few minutes". "Oh wait please, can you make a vertical cut over the horizontal? If I'm going to have a scar I would love to tattoo a treasure map over my shoulder and the X can mark where the treasure was" The surgeon can't make any promises, but will see what he can do. When all was said and done, he did make a small incision as requested.

The surgery was not long at all. The staff were all amazing and kind. Zack woke up quite loopy from being put under  and the fun began. He would tell the recovery nurse that he is going to have "your name" tattooed on his butt, so that he could win every bet and make a fortune.  She looked at me as if to question what that meant. Zack then explained "if I have YOUR NAME on my butt, then I can bet everyone that I have YOUR NAME on my butt" It took her awhile, but she finally got it and thought he was hilarious!!! I offered for her to keep him!!

It took about three days of him staying at home and resting for the scar to heal. It is now Monday and just about completely healed up. He missed out on a couple of fun get togethers this weekend, but once I reminded him this was just for a couple of days, he lightened up. His attitude continues to amaze me and everyone around him. He continues on his new path and continues to teach us daily about the true meaning of life. 

Friday, June 14, 2013

Post treatment protocol

Today was the first day of flushing of the port. This is the first time we return to the Cancer Center after completing the treatment protocol. I'm not sure what I expected, or Zack for that matter. We both had the idea that we would go in, the nurse would weigh him, measure him and take his vitals like every other time. We expected his port to be accessed and "flushed" or cleaned out. We did not expect them to take his labs and wait for the results. We were escorted to the "usual" television room and then asked to wait for the results.

We had a post treatment meeting with Anne, whom is a research nurse who works closely with patients, families, and staff. (When a child is diagnosed with cancer, Anne works with the family and the child in the hospital providing them with information that they will need over the next several years. After discharge, she will follow up with them in the outpatient clinic to ensure that their questions and needs are addressed. She works closely with staff addressing questions about the patient and family to help provide a continuum of excellent care. She most recently helped create a smooth transition for the hematology/oncology clinic from Mission Children’s Clinics to the SECU Cancer Center. She took on a leadership role and added responsibilities to make the transition as seamless as possible for staff and patients. As a research nurse, she worked with staff and physicians to prepare for a successful audit. She is also in school. Anne’s dedication and compassion for nursing is displayed everyday in her interactions with patients, families and staff.) 

Anne entered the room with two pieces of paper. She is more serious than the other nurses. She was one of the first we met with to go over protocol, possible trials that are going on around the Country and to ensure we are on target with treatments based on protocol. She sits down and begins to explain our new schedule. The shocker was that Zack will have scans every three months for the next three years, followed by every six months for the fourth year and once a year following. "This is the only way we are going to know if it returns." said Anne .... those words shocked me back into the reality of it all! Walking back into the center was already a reality check. When you are away, enjoying the day to day, you put the past year behind you and try your best to move on. Anne had "offered" for Zack to have the port removed early, to which I was not amused! I firmly pointed out that this was major surgery and IF there are signs of anything, he would have to undergo two surgeries in a matter of months. The port is not affecting his everyday life and waiting another two months is in his best interest. Though Zack was not thrilled, he had to agree with the logic. Anne went on to explain the reasoning behind his continued need for antibiotics. She said there is a special type of infection that he "could" get from the port which could lead to pneumonia. Having had enough "information", we agreed to continue with the Septra. As Anne exited the room, Julia entered with the best possible lab results. She said all of his counts are in great shape and he is free to do as he wishes. His only limitation at this moment is lifting weights, and that is due to the port. 

My plan was to go to the Red Cross and donate platelets, but once we left,  I was so tired and Zack hungry. We had a nice lunch and were on our way home again. The Red Cross has been calling me every other day asking for platelets. One of my main missions is to work with the Red Cross about getting platelet machines in our own town. It is a huge problem as it takes about five hours from the day to drive to Asheville, donate and return back to Brevard. I have spoken with a lot of people in town and those that are able to donate simply say it is too far and too much time to go to Asheville. 

When we returned home, Zack ran up the road to work on a water feature for Frank. I laid on the sofa and before I knew it, I had fallen asleep and continued to do so for three hours. I was emotionally drained. It had snuck up on me and hit me hard.  Frank and Zack both returned about the time I woke up. Zack was getting ready to head up to his friends for a swimming party. Frank ran down to the pond to fish a little with the dog and I continued to process the day.

Zack has pre registered at our local community college. His plans are to continue working with Frank until he can get a job at a local store. He would like to work there in the evenings and go to school during the day. It is a very exciting time for us all. We have been celebrating his end of treatment, celebrating his graduation,  celebrating life in general. We know that we must continue to celebrate each day. As Mom reminds me quite often, he has been cancer free since the tumor removal. THAT is what we will hold on to. To hold our breath each time we have the scans will honor this horrible disease and we refuse to give it any more power. We will know each day, that he is and will continue to remain cancer free. 

Life after graduation.....

  Since Zack's and his friends graduation, we made a quick trip up to Blacksburg Va to see my nephew Nick Ladd be "hooded" which basically means, he is now a Doctor of Osteopath. Zack and Frank opted to stay home, as Frank doesn't travel well for long drives and Zack had multiple parties to go to all weekend. The following weekend, we had decided to throw our own party to celebrate not only Zack, but his friends as well.
 The day was simply gorgeous and we all had a wonderful relaxing time.

  
Frank cooked hamburgers, hot dogs and freshly caught trout.

  

     I haven't seen Zack or Frank this relaxed in a year! It did my heart good to see them have such a great time with everyone and thoroughly enjoy the day, laughing, telling jokes and catching up with old friends and family.