Test Results are in, Surgery Scheduled

I am at work, as is Frank, Zack is hanging out with his friends and going to see his Aunt Jamey. The "protection" starts. I text Jamey "do you or any of the kids have a cold, have been sick or a runny nose, even if it's allergies" She replies, "no we are all healthy, the house is clean but we do have two cats and a dog", I reply "we are even then, I have Frank".... we get a good laugh in and she writes that she totally understands.

We get a call from the Cancer Center and there is no trace of anything in his chest or abdominal area! This is GREAT news!! This means it has not spread. We make it through another huge hurdle.

I get a call from the surgeons office, the anesthesiologist and the scheduling dept. Zack's surgery will be tomorrow ( Friday) at Noon. We are to be there at 10:45 to prep him. The surgery, as with everything else is at Mission Hospital in Asheville, NC. A big (ok I live in Brevard, people) city just 45 minutes away. They will be installing the port and do a bone marrow biopsy on his hip. This is the FINAL test to show that he does not have any more cancer cells in his body. The port will be inserted into his chest on the left side, this will enable them to connect the tubes for his iv for the chemotherapy. This will stay in him through the course of the treatments. Of course I had to make some joke about charging my cell phone through the port, I did manage to get one chuckle... (Humor is my way of coping).

My wish is to start the chemo on Tuesday next week. I am off work and can be there for a day or two to get him settled in. We are to go and meet with the Doctors after the surgery tomorrow to set up the rest of the treatment schedule. 

Glossary: These are all the tests that Zack has had to date.

Cancer: 
Cancer is a complex disease and occurs when cells in the body begin to grow chaotically. Normally, cells grow, divide, and produce more cells to keep the body healthy and functioning properly. Sometimes, however, the process goes astray; cells keep dividing when new cells are not needed. Some types of cells are more prone to abnormal growth than others. The mass of extra cells forms a growth or tumor, which can be benign or malignant.

MRI:
Magnetic resonance imaging (MRI) is a relatively new and painless technique that allows doctors to look at the soft tissues of the body. it is different from regular x-rays like you get in a doctor's office because it does not expose you to radiation. Instead, a radio frequency is used to knock your hydrogen atoms out of line. As they move back to their natural alignment, each hydrogen atom in your cells emits a tiny electric signal. The MRI scanner has very strong magnets in special coils to detect the electric signal. A computer uses these signals to create a detailed image of your soft tissues.
Magnetic resonance imaging allows doctors to see the image of many structures inside joints that cannot be felt by direct touch with their fingers. Some of these structures are ligaments (tissues connecting bones), menisci (tissues absorbing shock in the knee), and tendons (tissues connecting muscle to bone). The ability to look at these structures inside an injured joint has greatly improved patient care because, in many instances, it enables doctors to correctly diagnose and treat the injured structures earlier.

PET scan:  
Positron Emission Tomography (PET) and Computed Tomography (CT) imaging have become essential diagnostic tools physicians use to reveal the presence and severity of cancers. PET/CT imaging helps physicians detect cancer, evaluate the extent of disease, select the most appropriate treatments, determine if the therapy is working, and detect any recurrent tumors.
Before a PET/CT scan, the patient receives an intravenous injection of radioactive glucose. Many cancer cells are highly metabolic and rapidly synthesize the radioactive glucose. Information regarding the location of abnormal levels of radioactive glucose obtained from the whole-body PET/CT scan helps physicians effectively pinpoint the source of cancer and detect whether cancer is isolated to one specific area or has spread to other organs.
From this information physicians can plan an effective treatment strategy. Treatment options include surgery, radiation therapy, systemic therapy, or a combination therapy where one or more of these options are combined.
During the course of treatment, the information from the PET/CT scan allows physicians to monitor the effectiveness of cancer therapies and provides physicians with the opportunity to change the treatment strategy if it is not working, avoiding the cost and discomfort of ineffective therapeutic procedures.
After completing the treatment regimen, a follow-up whole-body PET/CT scan can provide information to assess if the treatment was successful and if areas that were previously abnormally metabolically active have responded. Often, scar tissue at the site of surgical resection or radiation treatment may appear as an abnormality on the CT scan. The PET portion of the PET/CT scan can detect residual disease within the scar tissue and indicate if the treatment was successful or if the tumor has returned.

CT Scan: 
A computed tomography (CT) scan uses X-rays to make detailed pictures of structures inside of the body.
During the test, you will lie on a table that is attached to the CT scanner, which is a large doughnut-shaped machine. The CT scanner sends X-rays through the body area being studied. Each rotation of the scanner provides a picture of a thin slice of the organ or area. All of the pictures are saved as a group on a computer. They also can be printed.
In some cases, a dye called contrast material may be used. It may be put in a vein (IV) in your arm, or it may be placed into other parts of your body (such as the rectum or a joint) to see those areas better. For some types of CT scans you drink the dye. The dye makes structures and organs easier to see on the CT pictures.
A CT scan can be used to study all parts of your body, such as the chest, belly, pelvis, or an arm or leg. It can take pictures of body organs, such as the liver, pancreas, intestines, kidneys, bladder, adrenal glands, lungs, and heart. It also can study blood vessels, bones, and the spinal cord.
Fluoroscopy CT is a special test that is not widely available. It uses a steady beam of X-rays to look at movement within the body. It allows the doctor to see your organs move or to guide a biopsy needle or other instrument into the right place inside your body.

Bone Scan: 

A bone scan is a test to help find the cause of your back pain. It can be done to find damage to the bones, find cancer that has spread to the bones, and watch problems such as infection and trauma to the bones. A bone scan can often find a problem days to months earlier than a regular X-ray test.
For a bone scan, a radioactive substance is injected into a vein in your arm. This substance, called a tracer, travels through your bloodstream and into your bones. This could take several hours.
A special camera takes pictures of the tracer in your bones. Areas that absorb little or no amount of tracer appear as dark or "cold" spots. This could show a lack of blood supply to the bone or certain types of cancer.
Areas of fast bone growth or repair absorb more tracer and show up as bright or "hot" spots in the pictures. Hot spots may point to problems such as arthritis, a tumor, a fracture, or an infection.

It will be just two hours......

Wednesday were the CT and Bone scans. Zack and I head out to Mission after I managed to put in a couple of hours of work. Well... attempted to. The minute I got there my cell phone rang with surgeons, the anesthesiology dept, and whomever else needed Zack's information for the surgery that I kindly informed we were postponing until another opinion is finalized. Drs. Steve and Nancy being who they are, simply said, take the calls do whatever you need to do, you shouldn't even be here, we are here for you. Amazing people and dear dear friends. (Nancy is my bff, but we try and keep that our little secret... NOT!!!!)

The scans were scheduled for 12 Noon, we arrive at 11:30 and within 15 minutes a nurse comes out and says it will be 2 hours. (The two hours turned into 4 1/2 hrs as the nurse was not aware of both scans being performed... Not her department....) Zack agrees to text me when he is done, and I head down the long hall to locate a comfortable waiting area. I am looking forward to a little down time, just sit, breathe,  maybe even play my video games on my phone, (yes still addicted to Majong, Scrabble and Temple Run.. hey stop laughing!) . I locate the only corner in the Hospital right outside the Emergency Room entry where the snacks are ( is there any other place?) and  grab a cappuccino out of the machine. I settle on a comfortable bench near a large window to make sure I have good cell phone coverage for both the Doctor and Zack to reach me.


I lay out the folders with Zack's medical information and start to organize them a little better. I am just getting settled in when a young woman (Miriam) walks up and introduces herself to me as one of the case workers from the Cancer Center. She is sweet and has a very calming voice. I offer her a seat and she starts to apologize for anything that may have happened the day before. We talked for over two hours, I felt very much at home with her, telling her of my fears, concerns and why we felt we needed another opinion and possible treatment that would be covered financially. She pulls out her lap top and we start to handle my questions one at a time, she never once looked at the time, would sit back when listening to me, and just kept reassuring me that she had no where else to be, she would stay until I had all my questions answered. She showed me a sight http://www.inclusivehealth.org/ where you can now ( THANK YOU PRESIDENT OBAMA)... get healthcare, even if you are not insured (us) AND/OR have a pre-existing condition (again us). The coverage is $182.00 a month for a $1,000 deductible 80/20 after $5, 500 they cover 100% up to 1 million. BIG relief!! We then discussed St. Judes as she works with many of the staff there. She told me not to get my hopes up, because in her research they offered the same Trial Protocol that we were turned down (due to the surgery). She said that all Trial protocols must follow the exact guidelines. You would think after years of "Greys Anatomy" I would know this!!! That's how Meredith messed with Mc Dreamy's Alzheimer's research and they almost divorced over it.... but I digress... We talked about (sorry if you are uncomfortable with this) the fact that chemo could make him sterile, so we make arrangements for his future. I look at her and it hits me "WE are the faces on the posters of the Hospital" "When the Hell did THAT happen?" I start to cry and she sits there with comforting eyes, trying to find a kleenex. I reach in my purse and grab my Grandmother's hankie with the big letter "E" for Elvire. I tell Miriam, I have a piece of everyone with me. Including the heart shaped stone from Nancy. She stays a little longer and then I Thank her for all her time. I know feel more in control and better about our prospects.
 

I settle back into my corner, call the insurance company and there is another voice of an angel. She tells me to go online and you will be covered by September 1. She says "you go and take care of your baby, Momma Bear", yes I will... I can do this! I also know who to call for assistance until then (or not).  I decide I am ready to hear from St. Jude's, I call and they know me, know the case but are unable to discuss with me. THIS kind of freaks me out a bit, so I call Dr. P who immediately calls me back with the news.... He discussed Zack's case with a doctor at St. Jude and because he had the surgery, he is not eligible. The good news is, they would give him the exact same protocol as Mission. Mission also consults with St. Jude's in the event something comes up. I call Frank, run everything by him and he feels we got the information we needed. I tell him about the insurance, he is thrilled, I decide to rub the Obama Victory in his face later on.. (LOL) SO...Mission it is!! 


After hanging up from Frank, I get a call from Trish at Brevard High School, she tells me she is working on something for Zack showing that he needs special care. I break the news that Zack will not be returning to school, but will complete his requirements through the school. What do we need to do. She tells me to hang on and she will look into it. Two minutes later the phone rings.. and it is Lisa Chapman, Assistant Principal. She is so upset to hear about Zack, he is family, he is my buddy!!! ( Lisa happens to be Franks, and Zack's cousin on Franks father's side) She tells me she understands him not returning to school, it is too dangerous for his immune system. WELL, don't you worry, you focus and getting him better, we will get him a Chrome Pad, all the kids are getting that this year, and he can do his courses online. I will talk to him and see what online courses he would like to take that would keep him interested, he only needs one semester of English and three Electives to graduate. She doesn't mention the Senior Project, but we have that covered, Zack is going to work with a neighbor to re build something on a car (Ya think???).. She tells me how popular he is, how many people love him, she says to give him a great big hug and tell him he will have many visitors. I seem to loose it most when they talk about his school. This being his Senior Year is a big deal, but I remind him that BEING here for his senior year and the rest of the years to follow are just as important. He will not miss on seeing his friends, or staying in touch with anyone. He won't have to wake up early. Anything I can come up with to help him feel better.


Zack is finally out of the testing, we decide to go to his favorite Long Horn Steakhouse, and just chill. I tell him the news about St. Jude's and he is THRILLED!!! He tells me that he doesn't like to fly, didn't want to be away from his friends, and wants life to be as normal as possible. I am relieved! For the first time I feel like we are doing something right, mind you I KNOW we haven't done anything wrong, but as a parent you still feel some form of guilt. I call the Cancer Center and tell them we are on for the protocol. A few minutes later I get a call from Miriam calls me and tells me she heard the news. She is pleased and KNOWS that we will get the best care, I too am convinced. There comes a point where you have to trust, and if need be I can always take his records to Boston or Houston for information.


We head to Mom and Bobs. Oscar is there and we want to make sure we get a visit in with him. I surprise him on the way and pull into Best Buy. He looks are me and says his favorite word "Question Mark" with a smile. I tell him to go inside and look at the MPs players. I make an executive decision that he needs something to keep him busy if he is going to be in the Hospital for 3 - 5 days at a time. We find the perfect match, he can play games, watch movies, download his own music and go online. He immediately downloads Skype and I then realize that I can "visit" with him on my lunch breaks via the internet, so we download the same on my phone. This makes him very happy. I tell him NOT to get used to being spoiled, that is it! (Yeah right!)

We arrive at Moms and she looks sad, this has been so hard on her. She helped raise Zack ( at the shows and in the shop) until he went to kindergarten. They have an especially close bond and she hates seeing him go through this. She is worried about our choice. At my request so many people have come out with locations for us to pursue. Ultimately this is the best choice we have, given all the factors. With cancer they say it is 2/3 mental and 1/3 treatment. If Zack is not with his support team, that will affect him too much, a risk I am not willing to take. Mom explains that it takes her a couple of days to realize what is going on and she is sure she will do better soon. I want to take the pain away from her, but this is another part of life that sucks, but like the Doctor said it is treatable and curable!!!


We leave there and head home. I get home and have a melt down because of two close calls on the road, a mailbox and dear jumped out at us. ( you figure out which is true... LOL)  Zack runs to the back, punches the dirt bank in the back of our house, gets his hands dirty but not broken TYG, and I call my mentor Bob (brother of course), he is the calmer in the family. Poor Frank comes out to greet us and is met with two VERY emotional people. He takes care of Zack, gives me a hug, takes my purse and leaves me to my phone therapy. After about thirty minutes, I am calm again, Zack is asking if he can go to his friends house, I send him on his way and then fill Nancy in on the days events. We hang up after about an hour and I crawl into bed knowing that it will all start over again soon, but at least tomorrow will be "normal". Zack will be with his friends ( in my car.. YIKES!!), I will go to work as will Frank. We will have a normal dinner, maybe a movie and be ready to face another day....

Take the rugs away from the Doctors

AGAIN the rug is pulled from under us! How many times is this shit going to happen? Frank, Zack and I go to meet with the Doctors at Mission regarding the Protocol Trial. We are introduced to ONE doctor and ONE nurse. He TELLS us that we are going to do a CT scan because "something" is showing in the lymph nodes in the pelvic area. He just wants to make sure that everything is gone? While doing the CT scan, they will do a bone scan as well. Um, excuse me? We were told that it wasn't in any of the organs, that everything was gone and now this?  He then proceeds to tell us that this will happen tomorrow, and the surgery (yes another surgery) will happen on Thursday to install the port for the chemotherapy and while they are in there doing that they will do a bone marrow extraction just in case they need this later on, or was it test the bone marrow. Oh yes, and Zack won't be returning to school this year because his immune system won't be strong enough to fight off diseases that are lurking around the schools, but he can do it all from home including his Senior project. He will be in the hospital for 3 -5 days for the treatment, but there are lots of game systems he can play and a TV and people there to make sure he is entertained. Oh and you are not eligible for the protocol because Zack already had surgery to remove the tumor, but you would have had to pay for that anyway, it wasn't at no cost. He leaves to make all the appointments, the nurse returns with a doll and proceeds to show us how the port is going to be installed.

I text Nick (my nephew and recent graduate as a  DO) and he calls me, just in the "nick" of time... I run out into the hall, I can't breathe, I can't collect myself, he asks if I'm there, I start to cry, his calming voice says It's okay Aunt Sabrina, it's okay. I don't understand? why are they telling us all of this, why not in the trial, why not realize that they just told my son, a young healthy young man that he can't play football, he can't go to school with his friends, he can't go to school in the afternoon to learn automotive (his true love). Do they not have feelings? Do they not realize that all he wants is to live life? He explains calmly why they are doing the tests, it all makes sense when he explains it, but for the life of me I can't remember a word of it. I am calmer, OK, we can do this, he is still in great shape, it still hasn't gone anywhere major, if anywhere at all, they just need to make sure, this could just be fluids... I think.. It's so hard to get excited, they keep pulling the rugs from under us. As I walk back into the room, I see a mother, her young daughter is in one of the treatment chairs, we make eye contact, she sees me wipe away my tears and looks at me with compassion. She was in my shoes not too long ago, she knows what I'm feeling, she is telling me to hang in there with her eyes. OK we can do this!!

I step back into the room and the nurse has finished showing Zack the procedure for the port. The nurse shows me and I am numb. They want to stick THAT inside my son? A boy that has had one surgery his entire life and that was to remove this fucking tumor ( I told you that word will show up).  Why aren't THEY freaking out about this? Oh... They do this all the time, they are used to this, one day, I guess I too be used to this, Frank will be used to this, this will become a part of Zack's life for the next year, he will be used to the chemo, the needles, the tests..... it will be a part of all our lives. Everyone connected to us, we are all on this journey together. . We feel so much love from our friends all around the world. Doors are opening for us all around, and we must trust that the right treatment will be there for Zack.

We tell the Doctor that we will look into a second opinion as well, but will continue with the CT and bone scan tomorrow. We don't cancel the surgery for Thursday, one day at a time. We leave and decided to grab dinner at a local restaurant. From the car Frank calls a client and friend of ours. She says St. Judes... go nowhere else. They took care of her son and her. They can do the protocol, and they cover all expenses.  Frank thanks her and snaps the cell phone closed, announces that we are going to St. Judes in Memphis. Zack and I freak out!!!  We can't move there for a year, what about my friends Dad? My life is here Dad!!! I have to work too so we can pay the bills Frank, are you crazy? have you lost your mind? He steps out of the car to breathe ( I find out later that we scared the Hell out of him, he was trying to help and we are yelling at him in fear), this is all new to us all, we ask questions and get more questions, tests, fears... We are all doing the best we can. He gets back in the car, we can't eat, who can think of food at this time, not even me. We drive home, Zack falls asleep in the backseat, he is snoring he is so exhausted. I call St. Judes and ask what we need to do, she needs a referral from his doctor. I call his doctor, he has gone for the day, the nurse assures me he will call in the morning. I grab Franks hand, tell him we are a team and must be strong together.

We call our dear friend Lee ( family friend since before I was born). Auntie Lee, as I like to call her, is a tough, tell it like it is personality. My kind of people!!! Lee can help us, she knows people, her daughter lives in Boston and knows the hospital there, maybe she knows about St. Judes too.Lee's calming voice answers the phone. I tell her what all has happened, she is on speaker so Frank can hear too. She doesn't know much about them, but said that there is no reason to rush and make this decision in two days.  If this was so urgent why then sent me on vacation for a week?  I'm sure you have a couple more days to figure out the next step, contact St. Judes and see if this is an option. Go home, do research online, find out all you can on them. Frank gives a thumbs up. I am calmer, we will go home and research.

We decide to continue with the CT, but will hold off until we hear from St. Judes about the port insertion. No need to do that if St. Judes accepts us. I make my usual phone calls to Nancy, Mom and Bob. I had asked Nick if he could call his mother (my sister Rhonda) because he explained it all so well to me that he could do that for her. Nancy comes over to give her love and support. We feel so much better and calmer about things now. Somehow talking it out, things are clearer. Steve knows of a pilot that fly's people to hospitals at no charge, he leaves the man a message asking for his help if we have an appointment in Memphis. Mom is sending me tons of research she and her friend Joan have done. Bobby offers me a soft comforting voice of reason and calm if I need him, anytime.

We are exhausted, Frank and Zack manage to eat dinner we picked up at BiLo's on the way home, we have no clean clothes so I start a load of laundry. All I can do is go online, read the research, I find a referral page on St. Judes website where the parents can fill in all the information, I do so and send it immediately, at least that way the information is there before the doctor can call!! I did something!! I helped!! I had some control!!!  I sit down to write my journey in my blog. I received a lot of messages, emails and texts with people asking for details. I am too exhausted to call them all,  too exhausted to eat, I simply write back..... for updates please read my blog, love you!! I don't have any more energy than that.

I visualize us in a year. Zack cancer free and cured!! Watching him cross the stage with all of his friends, and planning his future at Nashville Auto and Diesel school.  I pour myself and glass of milk, goodnight everyone. Enjoy the little things, the little triumphs and miracles that have happened and continue to happen.

The Best Possible Results!!!

I wake up this morning full of extra energy. My hands are shaking, I have been awake since 3 am. I can't sleep. Who could? Well Frank, but with the physical work he does it's easy.  I get ready, staring at all my clothes and don't care what I put on. I find the most comfortable, easiest big black and white skirt. I need to have a no fuss outfit in case there is bad news. Yes, there is such a thing... at least in my mind  (which can be a scary place sometimes).  I go about my business, drop off the tax returns for Ruth to review, drop off the truck payment, I must stay focused on the tasks at hand so as not to go insane. Step one, two, three......

I make it to work just as Dr. Steve pulls in. He beat me to work, something that rarely happens. I am greeted by a warm and loving smile by both Doc and Atlas (our office mascot, a tiny little Pomeranian). I go in, turn on the lights, AC, computer, steps four, five, six..... We start greeting our patients. I smile, step seven..... hand them their folder step eight... and send them to the front room for their adjustments.. step nine... I KNOW I can make it until the Doctors office opens and we get our results from Friday's PET scan.   My best friend walks in (Dr. Nancy) and greets me with her sweet smile, she knows me too well, I can't hide my emotions. I look at her and say "nothing yet", "it's going to be good news, I just know it is" she responds with confidence. I quickly email Mom, with "no news yet", as I know she is already awake staring at the phone waiting for it to ring. By this time I had already called  Dr. Pollock's office for the results, "the nurses are not yet in, but they can tell me the results as soon as they get into the office." 

We are busy, a really good thing, pretty soon I stop counting the steps and just am on auto pilot. It is 9:30, 10:00 I call the office again, The nurse says she hasn't received the results yet, but will call me as soon as she has them. I wait until 11:00 and call the Cancer Center in Asheville where the PET scan was performed. The kind man says, we faxed them over two times to Dr. Pollock. I said " I am a mother, this is my baby, I NEED to know the results", he assures me he understands and said for me to call the Doctor again. "IF they tell you they don't have it, you tell them to call ME!!!" I hang up, call Peggy, Dr. Pollock's sweet nurse and TELL her the she DOES have the results and PLEASE PLEASE tell me... She says she can't but the Doctor will call. I ask when? She says ASAP!! I tell her to call him again and tell him I am loosing it!! Freaking out!! Going out of my mind!!! She calms me and says she will call him again. (Dr. Pollock is VERY good about getting back to his patience, I just don't happen to have any.

Within minutes I receive a call on my cell phone... I run into the Exam room leaving an adorable red headed child at the front desk. I sit on the floor and Doc P. asks how I'm doing. I tell him it depends on what you have to tell me, He says "there is not evidence that the cancer has traveled" "there are a few spot around the incision , but the lungs, etc.. look very good." I shout THIS is a miracle!!! Oh my God!!! So what's next. He says firmly, we are not out of the woods yet, he MUST meet with the team in Asheville and start the chemotherapy protocol. I tell him about my husband reservations and are the Doctors prepared to answer his questions. He assures me they are and tells me he will follow up in a couple of weeks. They will be the primary care givers from this point on. I thank him and he wishes us well.

I am sitting in my full skirt ( told you it was the right outfit) on the floor, sobbing for what seems to be an eternity. This sobbing is relief, I can breath again, I can smile and mean it, My "baby" is going to be alright. We still have a journey ahead of us, but we can handle it. I call Frank and tell him the good news. He says "why are you crying? happy cry" I laugh and say "yes, I can finally cry a happy cry. " I can hear from his voice he is so relieved. He says okay what's next. I remind him that chemo is still on the table and tomorrow's meeting will determine the next step. I call Zack and tell him, he is like "okay, hey can I borrow the car today?" Thank God he doesn't fully realize the impact, or maybe he's just very clever at hiding it. (of course he got the car!)

I finally come out of the room and am greeted by my sweet little red headed patient. She knows about  cancer having gone through this twice with her family. She looks at me and says are those happy tears? I give her a big hug and say "the happiest". She smiles her adorable smile right back at me. I go in the hall, Doc Nancy looks up at me, I give her a BIG thumbs up!! She comes running into her office, followed by Doc Steve and we all just stand there hugging each other with relief and joy!!! Nancy hands me the phone and says call anyone you need to, call your mom (of course I already had, she was out walking her baby Bijou, but when she returned Bobby had the good news for her).  Mom returned my call and was in tears, I swear she was ready to faint, she could barely breathe!! I worry she is taking this so hard, but I can't make her feel better, I can't even do that for myself lately. As Bobby says, we are a family of "fixers" and this one... WE can't fix, so we have to rely on others to take care of Zack. As I come out of the office another sweet face greets me at the front door, it's Jessica my co worker and dear friend. She has come in with her adorable three children for their family adjustment. I tell her the good news and she is in tears, another group hug and the inner office circle is complete. 


Today's modern technology makes it easy for me to reach out to everyone all at once. I text, call, email and FB family and friends during lunch. Docs Steve, Nancy and myself are sitting at our favorite table under the tress at our local Mexican restaurant, looking at each other and smiling. We all know this is a blessing, a miracle !! We are ready for the next miracle.

Weekend without the "C" word!!

I realized with the diagnosis being so fast and us all having to jump on the ride while it is in motion that we ALL need a weekend without the "C" word. I will take the weekend off to be a mother, wife, cook, cleaner and bookkeeper. All the "normal" stuff I LOVE to do. We will  fit a couple of good movies in with the family, and remember what it is like to talk about anything else but.....

My wish for you all, is this kind of weekend too. No worries, no fears, thinking about what show/s to watch, where to go and have fun, and how beautiful the rain has made everything. We are all blessed ( yes for lack of better word, I over use it.. deal!!!) and can make this weekend anything we want it to be.

Wish... and it is so... Have a great weekend! Hugs and Kisses to all!!!

"Remember to breathe"

 I wake up at 8AM, anxious for this day to be over and yet it just started. I try not to "wish" my life away, but I can't help but feel that way today. I get ready for my Doctors appointment, (right now estrogen and progesterone are my friends...and those that live with me are glad..Ha Ha ) sneak a bowl of cereal (Zack has not been allowed to eat since last night) and go in to tell him what to wear for the test. He is grouchy, hungry and asked for more information about the procedure. I tell him the doctor says it is not as bad as the MRI and he did great there so there is nothing to worry about. I tell him they will put in an IV. He then gets mad and buries himself in his pillow. He mutters "I HATE HOSPITALS!!!".  My first instinct is to hold him and coddle him like I did when he was little, but I know I must be tough with myself and him. I tell him that I totally understand his feelings, but he must also realize that these people are here to save his life, and he must see the good in what is being done, not the bad. " We are having this scan to show that everything is gone". He mutters, and assures me he is just hungry and hates needles. I give him a hug and go to my appointment.

When I return to pick him up, he is dressed and ready to go. His mood is better and he is ready to get the scan over with... so he can eat... He says "you owe me MEAT!!!, I want to eat at the steak house in Biltmore",  we both laugh and I promise him linner (lunch and dinner) after the scan. On the way ( a 45 minute drive to Asheville from Brevard),we are joking about the "meat" comment.. I tease him about a nice juicy hamburger and he just laughs. I tell him I have to be my usual obnoxious self or he would think me an imposter. He spots one of his favorite stores, "they have the horn I need for my truck Mom" I again promise to stop at the store on the way back. Just for today, right or wrong, I would promise him the moon.

The PET scan started at 1 PM and ended at 3:45PM. It started (surprise) with paperwork. We find out right away that the results will not be ready until Monday. I ask if there is any way they can do it before, but the technician tells me he is NOT the one that reads the scan. I am resigned and accept, still hoping they will tell me after it is all done. After about 15 minutes a very nice man came to the waiting room and escorted Zack to the back room. Rhonda (my sister) had insisted on staying with me. I am known for being stubborn and I in turn insisted I didn't NEED company, but was glad she didn't listen to me, it helped pass the time and we did have a lot of catching up to do.

The Cancer Center is actually a beautiful new building. With tile floors, fancy comfortable chairs and glass top tables. There is a boutique with nothing but snacks and "cancer" related items. Bandanas, scarfs, "save the ta tas" t-shirts, "we can beat this" hats, anything else you can think of. All of a sudden it hits me, THIS is where we are right now, we are one of "them" . I guess when Mom had Kidney cancer, it happened so fast, the diagnosis, surgery and recovery without Chemo, that it never hit me like this.  As we sit talking, I see women, men and  small children with no hair returning to their cars after their treatments. Is this going to be us? Will we be the family that "others" are looking at with sad eyes? I don't want my son to be pitied, I don't want people to feel sorry for us. We need the Love and support we are so blessed to have. I talk to Rhonda about our future. I know this will not be forever, and yet I know that I have finally figured out where I can volunteer when this is all over. I have been looking for a place to volunteer some of my time to help others, I feel good about where this will lead me, I will not be afraid of this disease, I will be able to offer some type of help to others that will be going through the same experiences. But that.. is for later. Now my son and husband need me 100 percent. This is bringing back so many sad and scary memories for Frank who's mother survived Ovarian cancer only to have lost her battle with Leukemia in 2007.

Zack comes out of the scan all smiles. First thing out of his mouth is "FOOD" .... As we are walking to the car I ask for his experience. Zack tells me he was given an IV ( the guy missed his vein twice, so that part wasn't too pleasant, Zack already hates needles) with  a small amount of radioactive material (tracer). This tracer is given through a vein, usually on the inside of your elbow. It travels through your blood and collects in organs and tissues. The tracer helps the radiologist see certain areas or diseases more clearly. He said that he was given a massage chair, he LOVED that part, he said it was warm and he could set it to whatever settings he wanted. He had to sit for 60 minutes for the fluid to go where they needed to go. He was telling me how wonderful the massage chair was, he was sitting back and almost asleep when all of a sudden the man came in to take him in for the scan. He said is really wasn't as bad as he thought it would be, but was relieved when it was over.

We go out to eat, he flirts with the server as she keeps the wonderful rolls coming. We tell her he hasn't eaten since last night, so he is playing catch up. She offers him more rolls,  I tease and say " I think you just met your future wife", we all have a good laugh (she is probably 20 and too old Ha Ha) and he again thanks me for embarrassing him.  I remind him that's what I'm here for... We say goodby to "Tante", (Aunt in Flemish) and stop at his favorite store. He picks out the horn for his truck, I, of course, find a couple of "gadgets" for Frank and we head home to another surprise. Our dear friends Hans and his wife Andrea are there waiting to visit from Cary, NC. Zack gives his hugs and taking my car heads out to spend the night at his friends house.

All in all it's been a good day. The journey continues, we KNOW the results will be good on Monday, and Tuesday will move forward with the "plan" with the team of Doctors, whatever that will be.  The Love, Positive Energy, Prayers and Support are so amazing I go to bed feeling like we are surrounded by the most wonderful light. Thank you for our many blessings!!!

What is a PET scan?

Zack will have a PET scan this Friday, at Mission Cancer Center in Asheville, NC. 

PET/CT Scans and Cancer
Positron Emission Tomography (PET) and Computed Tomography (CT) imaging have become essential diagnostic tools physicians use to reveal the presence and severity of cancers. PET/CT imaging helps physicians detect cancer, evaluate the extent of disease, select the most appropriate treatments, determine if the therapy is working, and detect any recurrent tumors.  The purpose of the scan for Zack is to determine if anything has traveled anywhere else in the body. The MRI showed that everything was removed where the tumor was located and the blood work also showed that this blood count is very good.

Before a PET/CT scan, the patient receives an intravenous injection of radioactive glucose. Many cancer cells are highly metabolic and rapidly synthesize the radioactive glucose. Information regarding the location of abnormal levels of radioactive glucose obtained from the whole-body PET/CT scan helps physicians effectively pinpoint the source of cancer and detect whether cancer is isolated to one specific area or has spread to other organs. At this time, Zack is more upset about not eating for several hours before. He thinks he will starve by the time this is all finished. He is also a bit apprehensive about being in the small space and having to sit still for so long.

During the course of treatment, the information from the PET/CT scan allows physicians to monitor the effectiveness of cancer therapies and provides physicians with the opportunity to change the treatment strategy if it is not working, avoiding the cost and discomfort of ineffective therapeutic procedures.
After completing the treatment regimen, a follow-up whole-body PET/CT scan can provide information to assess if the treatment was successful and if areas that were previously abnormally metabolically active have responded. Often, scar tissue at the site of surgical resection or radiation treatment may appear as an abnormality on the CT scan. The PET portion of the PET/CT scan can detect residual disease within the scar tissue and indicate if the treatment was successful or if the tumor has returned.
PET/CT scans provide information to help physicians:

• Locate the site of the cancer
• Determine the size of the tumor
• Differentiate benign from malignant growths
• Discover if the cancer has spread
• Select treatments that are likely to be appropriate
• Monitor the success of therapy

The "Outsiders"?

It came to me in the middle of the night like a bolt of lightening. Actually, it was "approprie" as I was awakened by a large thunder storm. I have been running around telling everyone everything was fine, going smoothly, and we had all our angels around us when needed. SO very true, every word of it!! But on the inside? " I'm fucking freaking out!!! sorry, those of you who know me well, are probably surprised that word hasn't shown up until now.

I came to realize that I have been taking my frustrations out on "outsiders".. those whom I do not have a personal relationship with. But are there really outsiders? Not really. We are all trying to survive, battling our own demons, at time just trying to make it through another day, sleep another night without waking up in fear or panic about something we can't control. I yelled at the Doctors nurses because they couldn't get my mothers prescription right for the third month in a row, the pharmacist because he couldn't fix it for me, the cashier because she didn't want to fix it for me, then the insurance agent (three weeks after my initial requests) who was not taking my concern seriously enough when told my house insurance would not even cover my mortgage, the eye doctors staff because they are more busy learning the new computer system than ordering my sons contact lenses, which was requested two weeks ago, only to find out they ordered them and didn't feel a call was warranted.

I knew what I was going through, even know the fear of my husband, son and mother whom adores her grandson and hates that he is even going through any of this. But what are these "outsiders" going through. Just last week I "thought" I was becoming more compassionate, and yet I am so embarrassed at my treatment of others this past week.  Am I justified in being angry and frustrated with their apparent  lack of customer service, yes. But.. Am I justified in treating them as if they were less than human? NO!!! I woke up wanting to send them all flowers and a note of apology. Since that would be overboard, I am simply going to forgive myself, and make sure that my next interactions with "outsiders" is kind and compassionate. Explain in a calm, loving manner what I need and KNOW that they are going to take care of us. If I find the need to yell, punch or scream.. My son has a great punching bag and we live in the mountains so I can yell and scream at the sky!!!

Here's to all the "outsiders" in our lives, may they one day become our friends.

Back to reality...

We had a wonderful relaxing vacation at Jekyll Island, Ga. For a few days we could "forget" what has happened in the past three weeks. Zack's leg is healing beautifully and his energy is back. He was spending a lot of time sleeping, but I know that was more fear based than anything. This kid is healthy. He works with Frank lifting a ton of rocks, rides his bike, swims, does pretty much the "norm" for a typical 16 year old.

I have wanted to hide, stay in bed and hide under the covers until someone told me it was a crappy dream. But we can't, we have to be tough, why do you think my nickname is warrior? It is a name I chose for myself years ago without really thinking about the reasoning behind it. It seemed to suit me, my life and my resolve in what I was here to learn this time around. So I am resolute in not allowing fear to take over. I am done with fear. Thankfully I have been learning how to handle fear and know the difference between my inner voice and fear. I see a wonderful Physiotherapist / acupuncturist. What a blessing he is to be in our lives. He has taught me how to handle what is thrown my way and be grateful for the experience I am being taught. To look at it as part of life's journey. Pain as well as Peace are a part of life and can, if we allow it to, make us better people.

I already see even more compassion in Zack and he is a pretty caring kid already. We just returned from vacation and he discovered while we were gone one of his very good friends was involved in a bike accident. A truck (driven by another friend) struck the front of the bike as it was sticking out in the road, and he was thrown, no helmet. Broken shoulder, head gash and jaw now wired shut, He is looking at months of rehabilitation and facial reconstruction. The first thing Zack did when he found out was go and visit, call me and ask what we can do to help him. He isn't thinking about what he is going to go through, he is more concerned for his friend.

We have the PET scan this Friday and I re-scheduled the Oncologist ( Protocol ) visit for next week Tuesday. It didn't make sense to meet with the team until after we have all of the tests completed. I will of course keep everyone posted as we get information. Thank you so much for all your sweet messages, calls and emails. We feel so loved and always have!!! We have one hell of a support team!!!

Happy Independance Day!

We wake up to a beautiful day. The sun is shining directly into our room and though it is already hot outside, it feels good to feel the sea air and listen to the calmness of the waves. Mom is already out ( at 7 am ) walking her precious little bundle of energy (Bijou). The boys are asleep all over the room (with legs and arms proving a tripping hazard if not careful ). I look around and feel so blessed. Here we are in a nice room at the beach and a chance to have some fun and create more memories.

I wake up thinking about what all has happened in the past three weeks. It hit me late last night, and luckily the boys were out girl chasing (NOT... or ???? YIKES). I lost it, Mom is there to remind me it's okay to loose it and let it go. It's not good to hold it in.

I am reminded of her Journey with Dad, the broken ankle, the kidney cancer she so calmly handled and then 10 days later a broken back. At 80 years old this woman is the toughest woman I know ( I used to think it was my grandmother, but Meme.... you lead a charmed life compared to your daughter I hope you are up there singing her praises). I realize how I "knew" what she was going through and yet didn't have a clue! How could I? It's easy to be supportive, to be there, but the phrase "until you walk in a mans shoes" is so true. I think of my best friends Nancy and Steve. I was there with them when their daughter had her car accident, I have been there all along, to Love, Support, Encourage and yes even get angry at the circumstances life can throw as a result of the accident... But I didn't have a clue, not really. I have a new empathy that was never there before. If this is the one thing that I needed to learn from this, then it will make me a better person. I now look at people with different eyes. What are they going through, are they mean because they are in pain? are they sad because of life's pain? Are the smiling because they survived a tough time and are rejoicing? THAT will be us again. Every time we make it though another stumble, we are laughing with our friends and loved ones. We are blessed because we make it through another day and hope that we have learned along the way,

I am ready to go out there, get a tan (safely of course SPF 70) and play in the ocean with my entourage. I wish you all an amazing day, full of fireworks and fun.

Love and Peace!!

Beach, here we come

Having received the okay from the doctor, and the good news last week, we decided to continue with our planned trip to Jekyll Island, Ga.. ( In 1886, Jekyll Island was purchased to become an exclusive winter retreat for America's most elite families, known as the Jekyll Island Club. For more than half a century, the nation's leading families, including the Rockefeller s, Morgans, Pulitzer s, and Gould s came to Jekyll Island "to secure an escape.")  Now a small community of  300 invites us "tourists" every year. My best friend, Nancy introduced me to the Island five years ago and I immediately fell in love with it's history, charm, turtle sanctuary and peacefulness. Yes, even in the summer.

Zack invited his friend Chris, and Mom brought her beloved Bijou (Frank had to work), so we will partake in a lot of rest, peace and fun. I'm sure the boys (being typical 16 year old) will check out the young ladies in bikinis. Our spirits are strong and though we know next week will be when we find out the next steps, we are ready!

Thank you for all the loving emails, notes and messages. We are so blessed to have such an amazing support system and feel your Love and Positive Energy.

Have an awesome week (will post more photos of our vacation later on). This one is kind of scary, but we did just arrive from a 7 hour trip. LOL. Hugs!!!

Answering your questions

We have been met with several questions and thought it would help to clarify.


The clinical trial  "protocol" ( Novel Combination Chemotherapy for Localized Ewing Sarcoma) is in Phase III. What does that mean?   There are several phases to protocols. You must complete one phase before moving on to the next. Phase I must prove that it is safe. Phase II must prove that it is the same as the treatment that is currently available. Phase III must prove that it is better than the current treatment available.


Why do the trial and not go to a "specialist" ? IF for some reason another surgery is needed, we will indeed go to Boston or Houston for surgery. We will not handle that locally. We are blessed that the surgery to remove the cyst went so smoothly and that the surgeon was able to remove everything, but we won't push our luck. Since the trial offers the same treatment or better as the specialists, we feel comfortable with that course of action.


Why not do alternative treatment  in Tijuana, Mexico, I will have to quote Zack on that one, "the only thing I want from Tijuana is booze and hookers," Like I said he has a sense of humor, twisted at times..... like his mothers. (hey he is a 16 year old with hormones). We totally appreciate alternative treatments, just not in this case.


When does he start chemotherapy? and how long? That is yet to be determined. We will know all the details when we visit the team of Doctors next week, and have the PET scan results. We are hoping that we don't have to have it for the full year since the MRI and blood work came out so well.


How are his friends handling all of this? Zack has an amazing group of friends. They are rallying around him and though he doesn't talk about it much (he's actually tired of hearing about it) they have all come to me or Frank at one point or another and discussed what to expect. These kids remember a young senior girl that passed away from cancer four years ago, and I remind them that this case is very different. Every case is different. 


What are you telling him? We are telling him everything. This is his body, his life and he deserves to know every step of the way. Yes, we still are in charge and responsible for his well being, but it is up to him to understand what is happening and what to expect. "We" tend to forget that he is still just 16, due to his size  (6'5")  but he still has fears, just like any of us would.  We are telling him to keep the language and thoughts positive. You do not HAVE anything... you had... and it is now gone...


What is the best advise he has received? I have to give that one to his Uncle Bob "milk it, milk it for everything you can get out of it", unfortunately Uncle Bob doesn't realize that Zack LOVES a lot of his collectables. HA HA...


What can we do?  Pray, Pray and Pray... I have never stopped believing in prayer. Don't throw religion at us, please. Prayer know no boundaries. Keep the language positive, words are very powerful. We KNOW and FEEL all the love and are so appreciative for your emails, notes, and phone calls. 

And the anger hits us.....

Rough day. I guess we were keeping so busy in the morning we didn't realize what we were trying to avoid...reality.  As the day progresses, we get more and more testy. The slightest thing sets us all off. Everything is overwhelming today.  Frank runs around the house looking for his book, I start to laugh and take a picture of him as it is under his arm the whole time, then I realize he looks confused, how did he not realize the book was there? Simple... we are all in a fog.  I suddenly feel bad about laughing at him and make sure he is okay. He admits he is scared and worried. He hopes that because of the good news they won't do the chemotherapy, but I know they must still do that, even if it's a little bit, there could be something even if it's a tiny bit, and we need to make sure we get it all. I decide not to re -tell him, he will be reminded soon enough when we meet with the team. I was so glad he went fishing this morning, that helps him process things better, and he is sharing with his fishing buddies, which is huge, he usually keeps his feelings bottled up. 
 
I can't concentrate on anything but simple house cleaning. Even the bookkeeping seems to take me forever, so I just stop and give up until after the trip. Zack comes home from spending the night at his friends and is in a bad mood.  He starts to open up a bit, which is huge.. He tends to take after his father and keep his feelings to himself. Some of the realities of what he is in for hit him. What about a future with children? What about loosing his hair? He loves his hair. What about throwing up, he hates to throw up. I try and tell him to take it a day at time, sometimes one minute at a time.  Not everyone gets so sick or looses their hair, there are so ways to have a family. I tell him how special he is to us and so many people. I remind him that we caught this early and as Nick (my nephew) advised me earlier this week, Attitude is 2/3 part of the healing and the treatment is 1/3. Stay positive! It's okay to get pissed off, that too is healthy, but don't stay in that place for very long. We had a long good discussion and I'm hoping that I was could at  least offer a little comfort. I remind him of Forrest, a young man in the extended family that has been through this recently and wants to be there for Zack to help him through the treatments.  He seems to feel a bit better and of course as he does, so do we.

I'm glad this day has ended. It was a shitty day for sure, but there is always tomorrow. Oh yeah, did I mention my glasses flew out the window of my car of my dash never to be seen again. Yeah, well... they're just a pair of glasses and luckily I have a backup pair. Material crap doesn't mean a thing, when your child is in pain. The lessons are already starting, and I feel blessed.

Photo Gallery (WARNING GRAPHIC)

Stitches out

 
MRI AFTER TUMOR REMOVAL
                                                        June 29th, 2012

                       

Good News!!!!

Today we had an MRI. I asked the technician why they don't take an MRI of the entire body, he says that they are not that advanced yet. The PET scan will show the entire body. I recognize the woman behind the counter, she has known Frank and his family her whole life. She remembers me and my sister, as she graduated the year before us. A little more comfort from a small town, you know the people.

This is one of the MRI pictures, you can see where the tumor was removed. An MRI shows "slices" of the area, so this basically looks like it was sliced in half.

Zack is ready, he doesn't like the idea of a needle, but is tough and acting cool. I'm not allowed to go back with him, but he doesn't need me there, He has it all under control. Forty Five minutes later he is finished. We are told to wait for a disc so we can bring it to the protocol doctors. Zack is ready to drop me off at work and go hang out with his friends. He is done with the tests and wants to drive around and be cool.

He drops me off at work, the office is closed and a perfect time to catch up on the work I was behind on.  I am keeping busy while waiting for the phone to ring. I call the office, no news yet but she guarantees that Dr. Pollock will call. He is great at communication and will not go home until we know the news... She is calming and very sweet and understanding. I apologize for calling so many times, with questions.. appointments, etc.. she says I can call her as many times as I like, that's what they are there for.

It is 3:30 - 4:00 I don't even know. Dr. Pollock calls, asks how we are doing so far, I tell him overwhelmed and he tells me he will always be here for us. He tells me that the results are in. the MRI shows that everything was removed. There are no traces of anything. Dr Bridges removed everything. Yes, for the first time I can mention his name, he is vindicated, he took care of my baby and did a great job. Bedside manner aside he did a good job. Of course we found out that he should have taken x-rays or MRI prior to the surgery to see exactly what he was dealing with, but the angels are with us and it all turned out great.

The second part of the good news? the blood work came back negative. Blood cell count is very good and no signs of anything abnormal. I could kiss this doctor, I don't even think his wife would mind. He is my angel on earth. What does this mean? There is a pretty good chance that there is nothing anywhere else in his body. The PET scan will show this for sure. He is still going to need chemotherapy to ensure complete removal of the bad cells if there are any, but that is for the next set of Doctors with the protocol.

I thank Dr. Pollock over and over again. He lets me know that even though another group is taking over, ANYTIME we have questions, he is just a phone call away.

Zack picks me up at work excited about the news, Frank still questions why the chemo and how will they tell if it is gone if they can't see it now? All questions for the next team of Doctors,. 

Next.... A much needed vacation to Jekyll Island, GA with Mom. Meet with the trial doctors on the 11th and the PET scan on the 13th...... then........ the journey continues.....

A community and world unite!!!

Zack insisted on going to see the Coach on his own. He wanted to tell him that he would not be able to play. He told him about the diagnosis and chemotherapy. The Coach asked if he would please keep him posted.

The next morning Zack received a text from the Coach. "I have thought about your situation and we have decided that we would still like you to be a part of the team, we will work around your schedule and see what we can do to help you out." 

I cry (just a little) as I see a community come together again, as they had years ago for my dear friends. There is something about living in a small community, when you need them, they are there.

I dare not forget the people from around the world that have shown their love, generosity , support and time.  We are truly blessed!!!!

Breaking the news...

Hello Everyone,

Please accept my apologies for a group email, I have been on the phone all day and feel this is a better way to reach the masses of amazing friends and family. First let me say that we feel so blessed, we have an amazing support team and feel each and every one of you with us.  Zack has asked that we keep this information within our immediate friends. He doesn't want to be labeled, and we want him to have as normal a time as possible. We also want to keep upbeat and are asking positive words and thoughts. We KNOW this is a HUGE part of his healing.

Zack had a large mass on his left leg.  He had surgery to remove it on June 6th and it has been determined based on a pathology report to be Ewing Sarcoma.  This is considered an unusual form of cancer which has been known to be aggressive. There are few cases around the world (leave it to us to come up with something different...), however there is currently a protocol in Asheville for this specific sarcoma.

Our current plan:  We received the news regarding the pathology report today, had blood work done and tomorrow we go for an  an MRI on the area where the mass was removed to ensure that it was completely removed and no residuals are there.  IF everything was removed (the surgeon is convinced he got it all), we proceed to Asheville for a pet scan (no we are not having our pets scanned...) this will determine if there are any other masses. IF they find another mass or some other areas then another surgery will be the first step. (surgery alone will not cure the sarcoma, it requires both surgery and chemotherapy and in some rare cases radiation.) the success rate is high for a cure and we are confident that this is the way to go. Based on reports once this is cured it doesn't return. Woo hoo!!! The next step will be to start the protocol of chemotherapy in Asheville. There is a clinical trial (like they have in the "big" teaching hospitals all over the US. This is what they call "protocol" ( I'm learning a whole new language).  This trial ( Novel Combination Chemotherapy for Localized Ewing Sarcoma) is being studied in the US, Canada and Australia. They are following the same protocol as a pediatric oncologist with added meds to the "cocktail". the trial is the first COG trial available through National Cancer Institute Support Unit.

Our world as we know it is changed forever....

We are in the surgeons office for the last time. He is going to remove the stitches. I am anxious, but told Frank he didn't need to come, he is after all working very hard to help pay for all of this as we have no insurance. We were only having the stitches out! The surgeon comes to get us, not the nurse, he is all bubbly, I am already suspicious, where is the asshole that was condescending just the other week? He calls Zack buddy, and is smiling. I don't trust him. We walk into the exam room and he says, "let's take these stitches out first, then we'll talk."  SHIT!!!! What the hell is he going to say? He removes the stitches, teases about the nurse being to blame if he hurts Zack, even so the nurse is not in the room. My heart is racing, I can barely breath, "hold it together, practice your relaxation, breath, think positive thoughts, throw out the negative".

The tumor (Tumor??? he has never called it that before? I don't like that word) The tumor, was cancer. It was a type of sarcoma. I ask him to spell what exactly it is, he tells me he has spoken with the pathologist, but hasn't received the report yet. It is on its way from Cleveland.  What is next? Where do we go from here? I wanted out of his office, I wanted to be with someone that knew what the hell they were talking about, someone with feelings. He tells me he brought Zack's paperwork downstairs to the Cancer center. "They are going to lunch, but if you hurry, you can catch them and make an appointment". We leave, not saying another word, We run past his receptionist and tell her I will call later for the bill.  Zack is guiding me down the stairs like he is in charge. He was.. at the time.. he became the adult. Even for just a minute. We go downstairs, there, behind protective glass sit two women. They are calm, sweet faces and ready to handle whatever I throw at them.  I tell them who we are, they are ready for us. They make an appointment for 28th, just two days away. His name is Dr. Gregory Pollock. He is a hematologist, another word I never heard. I ask the ladies "who are you people? what do you do? Why are we here? One of the ladies explains in detail what they do, I hear, but don't hear. Zack later tells me everything that he heard. Again, he is the adult and is calm. He hugs me and tells me " calma, calma Mamma " His Spanish is finally paying off. Ha ha.

We leave, run up the mountain to Franks work site, breaking the news. All we know is we need to meet with this new doctor to find out what the next steps are. I see the fear in his eyes, The trauma that we went through with his mother years ago comes back to haunt us.

Bedside manner be gone....

After many phone calls for the pathology results, I finally demand for the surgeon to check Zack's leg. It looks swollen and I want to make sure everything is OK. Zack's leg is checked out and the surgeon states the report is not back yet. He has spoken to the pathologist several times, but they want to be 100% sure that they know what this is. I ask if this is good news or bad news. His answer? "Well if it's good new then it is benign, if it's bad then it's cancer" After listening to his double talk for several weeks, I finally lost it and reminded him that the "man" he is talking about is right in front of him and is still only 16 years old!!! I told him that I wasn't going to "hold" him to his statement, we just want to have an idea. He responds with the same attitude "I'm not worried, you can't hold me to anything". I told him he was covering his ass and that didn't cut it with me. I EXPECT  the results on next weeks visit when the stitches come out, and will camp in his office until they are there!

We wake up ready to deal with the surgery and move on. Zack has had to postpone football practice until the Doctor says it's OK to go back. He is a Senior and has decided to play football for the first time and see what it's like. Of course, being 16, his main concern is getting his drivers license on Monday. That's all that's on his mind.... Not even the surgery can sway him from his ultimate goal of getting that license. 

He is more relaxed than I can imagine. We walk into the Hospital and are immediately greeted with more paperwork, but friendly welcoming faces too. We go in the back to prep Zack and he is handed a gown with a hole on the side for an vacuum type hose. What the heck is that??? turns out it is either for heat or air to help make the patient more comfortable. Wish I had thought THAT one up!! The anesthesiologist explains that he may have to put a tube in Zack's throat to keep the medicine, they put an iv in his arm for the . This boy has been blessed with good health his entire life. He was calm, in good humor and trying to make us feel good about everything, Typical Zack, with his warm kind heart and of course sarcasm.

The surgery is 45 minutes long. The surgeon comes out and for the first time since visiting his office, he is smiling. He sits down with us and tells us that Zack did an amazing job, He was able to remove the entire growth. It was amazing as it was not attached to anything as he had previously been concerned about. He said it was totally separate and self contained. There is a large incision, and would require rest for the next two weeks so that it can heal. The growth is sent to the pathologist for review. The surgeon still has no idea what it is, he has never seen anything like this.