Who opened the roast beef?

Now THAT'S how I like to start my day. Ask me something simple! I'm at work, it is 7 :30 am, the phone rings. My husband says "did you open the roast beef?" "no", I reply, "well who did?, Zack didn't, I didn't." Okay... "um, why?", "I'm not sure when it was opened and if it's still good". "oh, well, smell it, if it stinks, don't eat it!" "Okay, Thanks".... Nice, easy and simple. Of course me being me, I turned it into the question of the day.  Doc Nancy walks into work "did YOU open the roast beef?".... another thing we can laugh at.

It's the simple questions that I now treasure, where is my coat? do we have dog food? who opened the beef? The tough ones are out there with us every day as a reminder. When is my next appointment? Will I need a transfusion today? Will I be in the hospital for my Birthday? Is he going to wake up tired or energized? When are you paying the medical bills? 

Zack calls me this morning and asks to be adjusted. This is the first time he has felt good enough to do so.  Zack is excited when he arrives. Docs Steve and Nancy haven't seen his new car yet. Once the adjustment is completed, we all run outside to inspect the car. Zack was so proud, he was on his way to get new wiper blades and was going to clean it all out later in the day. He was showing off the front seat upholstery that was his gift from Floyd and Shawn, he was showing off the trunk, the original back seat covering. It was so nice to witness his pride as he was telling them his plans to paint it for his Senior project. 

Father & Son, Savannah  2011

We have answers to everything, well almost everything. This morning Frank wakes Zack up to go for a walk. We were told that he needed to walk more to get the blood circulating and help the cells rejuvenate. Zack is grumpy (he never has been a morning person) and they get mad at each other. I come home (the little peace maker, like all us women tend to be) and Zack immediately starts to complain. "Dad is grumpy today", "why?", "I don't know, but I'm tired of him being grumpy". I go on the porch where Frank is sitting reading his book, drinking his beer and smoking his cigarette. (hey don't judge, wouldn't we all want to be doing that right about now?) I lean over to him and ask "are you grumpy?". He answers with his usual "should I be?", "NOPE".. I go back into the home office where Zack is still sitting in the corner chair. I tell him that Dad is not grumpy, maybe you misunderstood? I ask "what happened?" "well, he came in and wanted me to go for a walk this morning and I don't want to walk in the morning", "Okay, do you realize that Dad is doing this for YOU, he doesn't really need to walk, doesn't really have the time before work, but because that is the ONE thing he can do to help you he does?" " Maybe just get up, go for the walk, then when you are done, come back and rest, if you feel you still need to  OR ask Dad if you can walk with him in the evening when he is back from work". "okay I'll do that"  I explain to him that many times we feel that we have little or no control over what he must go through, so when we feel we can do something that we know will help his well being, we jump on it.  Once done with the conversation, I "report" back to Frank. IF Zack doesn't walk in the morning, then he will go in the evening. He is agrees to the compromise. But not without me telling both of them that THEY need to talk to each other and learn to communicate better. (Yeah right that'll happen! A soon to be 17 year old and his Dad communicate!)

Zack's English teacher, Ms. O. came out to the house tonight and went over all of his work. She showed him how to use the new programs that his class is working with. She brought  him a portfolio to use as an example for his Senior Project.  Zack was all excited and energized when she left. He was telling me that he now understands a large portion of what he has been missing. Ms. Owen said that Zack is actually not behind which is absolute "Music to a parents ears."

We end the day with a wonderful dinner prepared by Frank and Zack. Tomorrow will be just another regular day with work for Frank and I and schoolwork for Zack.  There's just one questions left unanswered. Did YOU open the roast beef?"

I'll take medical questions for 100..

A very dear family friend sent me an email with questions. I'm so glad she did. Her questions are valid and when you are so busy making it through another treatment, another shot and another day you tend to forget the questions or even the answers. The question was based on yesterday's comment that Zack's numbers were "good" and if good why the transfusion?

It was interesting because today I received a phone call from a nurse from a subcontracting Oncology Group working for Core Source ( Inclusive Health Care) which is Zack's insurance company.  What this nurse does is make sure that Zack is having the right treatment, having the right care with regards to his treatment and help with co pay, gas money, pretty much anything to help Zack and us with regards to his diagnosis. One of the first things I asked her (since I wasn't at the clinic yesterday to ask) was about the blood transfusion. Melissa (the nurse) explained that red blood cells rejuvenate every 120 days, they are responsible for the nutrients and oxygen. A "normal" person can reproduce the cells with no problem, but when a person is undergoing  chemotherapy that  kills the red blood cells, and In her words "your son is on a very strong treatment, so his body has to work twice as hard to replenish the red blood cells."  The low blood pressure is also a side effect of the treatment and is a result of low oxygen.

She tells me that part of her job is to look into the treatment he is offered and make sure that it is the right course of action for his type of cancer. When I asked where they stood in that report, she said they were right on target with the treatment. Another part is to make sure that when presented with bills, Zack is actually receiving that type of treatment. She said unfortunately, many facilities charge for items that the patient never receives. I assured her that I too am looking at the bills and comparing what was done. But then again, I have always done that, whether I'm the one paying or insurance, to me there is no difference. She mentioned anorexia ( I know, sounds funny when you think about Zack) but she said that the patient can get to the point where they don't want to eat, so make sure they eat several small meals, no fresh fruits and vegetables because of possible bacteria that his immune system can't fight. 

A lot of this we already knew, but it is nice knowing there is an "outside" source looking out for us.  Melissa said she is going to contact the American Cancer Institute to see if they can help with some of the medical bills for the first month which are not covered by any insurance. She mentioned Zack not making it into the protocol which could have helped with so many things. I told her that we didn't even know about their insurance until Karen (our social worker at the Clinic) brought it to our attention. She said she is sorry that the case workers in both hospitals didn't advise us about them. She was surprised that Mission didn't know about it and is going to look into it. 

Zack's energy came back today. He was setting up his school work so he can get it done. His color is still way off, it's hard to look at him when he is so pale. He is loosing weight, but his spirit is good today.  I wake up each day and can't wait to see the little sparkle in his eyes. He wants to get out of the house, drive his car and who can blame him.  He asks if he can run up to Drake's house to see the new addition to the family and after seeing them all, decides to go with Drake to see Drake's grandfather. The problem is, he "forgot" to tell me he was going to another location. Nancy reminds me that this is what "normal" is, I have to laugh. She is right, We want his life as normal as possible. I tend to keep him in a bubble and though that must be the case at times, he is okay to go and see his friends. Some part of his life must continue as it was.

Tuesday's are my days off, so I made it my mission to get the house back in order. Floors were washed, waxed and now sparkle, laundry completed, I even managed to go through my closet and purge items I know longer need. Frank hasn't worked in a couple of days because of all the rain. It's been nice having the three of us here, running around doing out thing. For a moment, we forget what we are going through, what Zack is going through. The texts, phone calls and emails remind us all that we are not alone and we are so grateful!

Let there be peace on Earth and let it begin with me...

What should have been a thirty minute shot of vincristine today, turned out to be an all day affair. Frank and Zack headed out to the clinic for his 9:30 am appointment. Once there, they gave him the shot, received the results of his labs which all showed that his numbers were good. His blood pressure became very low and all of a sudden he blacked out again, like at the hospital. They determined that he needed a blood transfusion. So, unprepared to stay the entire day they settled in. The blood didn't arrive until 3 pm. Frank ran out and got their lunch (Zack was able to eat only half), later he went out to buy a sweatshirt for Zack as he became very cold in the clinic.

Zack was frustrated, he wanted to get back home. He just left the hospital! He doesn't get mad often, but today, he was pretty much done with it all! After spending the day at the clinic, he and Frank arrive home around 5 PM. Within the hour one of his teachers is at the house going over his psychology lessons. Ms. G. explained how nothing is pressing, however, knowing how he likes to procrastinate she encouraged him to just get his work done. Breaking it down in one class a day, he could finish his work by Friday's and have the weekend to work on his Senior project. Well, it all looks good on "paper". We'll see. I have faith in him and the teachers.

I was able to stay focused at work and know that Zack and Frank had everything "under control." Because it rained all day, Frank's work wasn't affected by taking Zack for the day. It's amazing how easily, we have found the perfect balance with regards to whom can take Zack and when.

Tonight we declare a "fix your own meal" night. as we have left overs from yesterday's wonderful meal. Zack lays in bed, half asleep. He finally comes out to fix a plate , "hey I offered but he said he wasn't hungry". Frank sits at the table eating dinner while reading his book, me? Since I have completed watching the entire "Greys Anatomy"  series, I have moved on to "Damages". I need the distraction and having a series to watch, gives me something to look forward to no matter where I am. I can always "hide" by putting my ear phones in and watch the show. When doing so, no one is around and I am in my own little protected bubble.

The evening ends with me making amends. There has been some family issues that needed to be resolved with extended family.  I finally decided I was tired of being angry, hurt and in turn being hurtful! One phone call and we are back on track. Zack was teasing me about my "conscience", I told him I don't want to go to bed with an angry heart, it hurts everyone involved and that is not a way to live. No matter where my anger comes from, justified, not justified the only solution is to resolve it. Now, having made peace I can go to bed and sleep peacefully. Tomorrow is another day, and I pray Zack's energy will return. I am so glad that we have no where to go, can stay home and get caught up with things, plus rest. 

Home again, Home again

Zack wakes up ready to go home, as am I. Though he didn't have as bad a reaction to the treatments as before, we are ready to be back to our normal routine. Rhonda asked that I meet her at the hospital cafeteria for breakfast and since we don't yet have our "walking papers", Zack tells me he will let me know when we do. We meet in the lobby and walk down the long halls to the Cafeteria.  Rhonda remembers it from when Mom had her surgery, but I think it was in St. Josephs. Hospital halls all seem to look so similar, you forget where you have been before. I don't remember the photos when Mom had her surgery. While eating breakfast I see Chris, he is Zack's day nurse. He tells me that Doc S. has discharged Zack, all he has to do is sign the papers. 

Rhonda heads out to meet her sons at Biltmore House (where she starts back to work on Monday) and  I'm headed upstairs to bring my boy back home. Zack is discharged at 11 am. We are already packed and ready. All we have to do is have Chris remove the IV from Zack's port and head downstairs. On the drive home, Zack was quiet. He wasn't feeling well from the drive and was anxious to get home. The closer we got to the house, the more he talked. It was kind of funny. I knew he was getting excited about being home, seeing his car. Unfortunately it was short lived. We ate lunch and he is ready to head out when I stop him and tell him school work first! This is when I hate to be the heavy, but he knew that was going to happen and as it turns out he "thought" I wouldn't follow through. He went into his room and has been doing his work, well most of it any way. He is also napping in between.n

It's hard to believe that tomorrow is the start of another work week. Frank is taking Zack to the clinic for his Vincristine shot so I won't have to run back to Asheville again so soon. I am hoping for a normal, steady day. I need normal. We all need normal, even if it's just for one day! 

I get a call from Nancy. She, Steve and Allie fixed us a meal fit for a king. They brought it over shortly after the call. It consists of Chicken Parmesian, pasta, broccoli , garlic bread and fresh made peanut butter brownies. How nice it is not to think about dinner. I have been eating out so much my body is screaming for "good" food. Tonight, thanks to the Cagen clan, we will have just that. Too bad Frank and Zack won't get any. I know... I'm a clown!

I will sign off for now, eat the delicious feast and go to sleep in my nice,warm, comfortable bed. We are down one more month of treatments and our boy is still an amazing teacher to us all.

"Good Morning Sunshine"

"Good morning sunshine!"...This is how my son greets me at 7:30 am. with very little sleep and four days in the same room without seeing the light of day. Last night was rough for him. His pulse ox was down  (oxygen levels) so they put a monitor on his pointer finger. Everything he is connected to has wires, every time he gets up to use the bathroom he must disconnect a wire or wrap up a chord. Alarms are sounding all night, one for the fluids being empty, one for the finger, one for the blood pressure cuff. He bolts up out of bed at  2 am, grabbing wires and angry. He says "I need to get out of here, I am claustrophobic and need to breathe!!! Having had panic disorder for many years, I knew exactly what to do. I turn on the light so he can see around the room, unplug his monitors, remove the finger monitor as he stands up. Within a few minutes, he feels better, is back in bed and sound asleep.

A couple of hours later, at 4 am I get a nudge. I wake up and he is up again, asking for a change of clothes saying "I forgot to change yesterday". I get his clothes for him as he tells me "you're snoring is keeping me awake"!  I put layers of pillows on the double mattress' so I am sitting up. Hoping this will allow him more sleep. Within ten minutes he is sound asleep. He barely remembers the incident.

Zack is back sound asleep so I decide I might as well get up, take a shower and head down to the cafeteria for breakfast. While down there I bring back something for him, which he still does not eat. His eating is way off this time around. He doesn't eat breakfast or lunch. He only manages to eat some dinner, which contributes to his weakness. His nausea is not as bad as his previous hospital stay, but enough to keep him from eating. This is the first time that I am staying "in house" to eat. I don't want to run off too far, so I take the elevator down to the second floor. Being a little nervous and anxious about going to a new place, I take my time. The halls are long, but filled with beautiful photos taken by the staff. They are personal, as if the staff are sharing their families with us. There are children in Halloween costumes, a family portrait of four generations, pets covered in mud from playing in the fields, a man holding a large mouth bass he just caught. I can't help but smile at the simple pleasures depicted. What a great idea, this makes the hospital more personal. No cheap prints or tree lined walkways in an unknown location. 

He has slept most of the day, he wakes up for a few minutes, grabs his cell phone texts a few lines and then back to sleep again. I ask the nurse if this is normal, that last time we were here he was so nauseous that took precedence, now the sleeping. She said it is totally normal, the chemo cocktail will make him tired. 

It is 2:30 pm and the chemo has started for the day. Zack gets up to go to the rest room and as he exits his face is white, his eyes start to close and He grabs onto the bathroom door. I stop him from falling by throwing my body in front of him, grab his arms and throw them over my shoulders. He slowly walks back to the bed. I hit the call button and ask for immediate help. The nurse walks in and I tell her what just happened. She tells me she had just given him decadron and probably put the fluids in too fast ( they take two minutes to do so, but for Zack they need to take a little longer or he has a reaction). She calls the doctor who orders an x-ray to make sure his lungs are okay. (the x-ray came out just fine). His oxygen levels were too low. It turns out that he has been so weak that he hasn't been able to walk around, by not walking around and being in the bed for the four days, he doesn't take deep breathes and that's what causes his levels to go down. They put him on oxygen for a little while, then brought in the insentive spirometer which he has to breathe into to build up his oxygen intake. 

I'm sure once we are home he will bounce back. He is tired of being here, who wouldn't? He is ready to be in his bed, with his television, his friends nearby. Frank comes to see us and pick up some of the items we brought for our stay. I see Zack perk up a bit. They talk about the car, how does it sound? why does it leak oil? what can we do about it? How much are you driving it? He tells Frank, "You better put gas in it, if you're driving it around"! we all laugh! I head down for dinner while Frank stays with him. I would love to have dinner with Frank, but we feel more comfortable if one of us is with Zack in the event he must get up and is dizzy. (which is actually just what happened). Frank heads out, so he can care for the animals. I tease him and tell him he better enjoy his "bachelorhood", he only has one more night. About a half hour after he leaves, Amy and Bill stop by after an all day bike ride around the mountains. Amy shares several pictures of their ride and they tell us of their adventures of the day. We live vicariously through others right now, sounds funny but true. They said there was no way they were going to be in Asheville and not stop by. How cool is that! With their visit came more laughter and help passing the time. 

Zack continues feeling sick to his stomach, so I call Will (our night nurse) in and ask for Benedryl to help him sleep tonight. He brings in his shot (which Zack likes to self administer) and gives him the Benedryl,.  Zack motions for me to come and sit next to him, he holds my hand and I snuggle with him for a little while until he is asleep. He may be a giant, but he will always be my little boy.The one the nurses call "an absolute sweetheart." 

Entrance to the Pediatric section of the Hospital

Smile for the camera!

After a fairly restful night, Zack and I awake to cheerful Amy. A talkative, energetic nurse that brings a smile to our faces every time she walks in the room. (even with the chemo cocktail). She loves what she does and loves caring for Zack. Amy is considerate, she makes sure the "beeper" on the IV machine is turned down low so as not to irritate us with the noise. She comes in before it sounds to change the back, organized and consistent is the name of the game with Amy.

Our day was fairly routine. I played Facebook games, caught up on my emails, arranged meetings with Zack's teachers and organized his school deadlines. It is all a bit overwhelming and after a melt down on the phone with the Vice Principal, I'm hoping the meetings with his teachers will help. They can show me how to use Moodle and Chrome book so that I can better understand what Zack needs to get done. He has English Honors, Three elective courses and His Senior project to graduate. All should be completed by December and he will then be able to walk the stage with the rest of his friends, and I will be one less nervous breakdown. Everyone is in agreement Home Bound is not the best option for Zack, but it's the only one at this point.

I run out for about 45 minutes to see if I can locate a student scheduler, but nothing out there is better than what I have already found online. I grab us lunch and return to Zack, who is surprised I was back to fast. I just didn't want to run around while he was stuck in a hospital bed. It was nice to get out for a few minutes, but just as nice to be back with my "little" buddy. Every time I try and take a picture of him, he covers his face or has a serious expression, but I have fun trying! Actually we both have fun trying, I stand there with my phone and giggle until he forms a smile, and what a devilish smile it is. Boy do I love this kid! Going through everything he is, he still manages to have that smile and laugh and be caring. When he was created, they certainly broke the mold.

Tonight I order Chinese to be delivered to the Hospital. Zack has not eaten since yesterday and even the sandwich I brought at lunch didn't seem to excite him, so I try and get him something he might enjoy. I had decided I didn't want to leave him as he still isn't feeling great, not to mention.the parking makes it almost impossible to find a spot until after visiting hours 9 pm. The nurses at the front desk are all plotting to hide our meals when they arrive. I must say for the work they do, the majority of the staff are cheerful and helpful.

We talk with Frank at the end of the day. He was out grabbing himself dinner and was driving Zack's car. While we have been in the hospital, we had new tires and a new exhaust system put on it. Zack is so excited he is ready to go home now just to hear her purr. He is so excited about automobiles that he even has ME looking at them and taking pictures that I then forward to him. I'm even checking out the rims on cars.


It was nice to have the day to hang out with Zack and just relax. Tomorrow will be devoted to "hovering" over Zack to get more school work completed. They have been making the treatments one hour earlier each day so that we can get out Sunday morning instead of Sunday late afternoon. Hopefully we will be home by one or two, in time to catch up on laundry, unpack and have a "normal" evening at home before beginning work the next day.

Changes in latitudes, changes in the attitudes!

"Its these changes in latitudes, changes in attitudes
Nothing remains quite the same
With all of our running and all of our cunning
If we couldnt laugh we would all go insane"  Jimmy Buffett

With three days down and two more to go, Zack's course of treatment is going well. He doesn't get much sleep, but who does when in the hospital? With nurses coming and going, taking pressure, changing IV bags, typing their notes into the computer, open door, close door. Two hours later, it starts all over again. The good news is his new medication is helping to keep his nauseousness away. I had failed to mention in my earlier blog about the nodule under Zack's arm. by Tuesday morning it was half the size, (Doc said the size of a pea now ) so they decided that a CT was not needed. It turns out this is not uncommon, it can happen from antiperspirant, so we have changed him to all natural deodorant. At least something we can "control".

Tuesday was my day and night to stay with Zack. Wednesday morning 7 am, the door opens and a young student nurse walks in. She is shy and quiet. She introduces herself and says she is there to do labs. I am lying on the  "makeshift" double mattress bed situated on the floor in a corner of the room. She looks down at her chart, looks around the room, looks down at me and says "so where is the baby, I'm supposed to see a 5 month old" . I look at her, point to the bed where Zack is laying head nearly touching the headboard and feet touching the extender they had to add. Zack is still half asleep, but manages a wave. She looks at Zack and says "oh".. walks over to the computer, starts to type, looks at her chart again and embarrassed exits the room. A few minutes later she pops her head in the door and says "I had the wrong room".  We burst out laughing!

I head out to work knowing that I won't see Zack again until Thursday night. As I am driving part of me is glad to be away from the hospital, the constant reminder of what he is going through, another part of me wants to start crying because I am leaving my child at a hospital, alone, with only nurses who think he is a 5 month old! I know in my heart he is fine, the daytime is such a routine now with school work and naps. It goes slow for him so by 5 pm he has an attitude about how much it sucks being in the hospital.

Work has been tough the last couple of days, my emotions are on my sleeve (duh) and all you have to do is say BOO and I loose it. Sometimes I cry, other times I get angry, either way.. not with good outcomes. The Big John drama from the previous days stays with me and is all brought to the surface again with a comment during an unexpected phone call.  At a time when everyone should be pulling together, anger, fear, jealousy and frustration take over. I have been down that road before and I don't want any part of it now. I want to spend the rest of the days at the hospital focusing on Zack's care and getting much needed rest.  I am finally at peace with my decision, so I call Frank and Linda and offer my prayers for Big John, but not my time or energy, they both  (of course) are understanding and supportive.

Zack, Nick, Peter and Daniel ( Forrest had not yet arrived )

I arrive at the hospital around 7 pm on Thursday. Zack is surrounded by Nick, Peter (cousins), Forrest (himself a former child cancer survivor and his brother Daniel, both part of our extended family. They are playing Risk Lord of the Rings, a board game with tiny little black, yellow, red and green men. I have not a clue what it's about, but they are having a great time.  Zack tells me that he had so many visitors last night and today. Shawn and Floyd, "Granny" Linda and Billy, Amy, Bill and Drake. Frank of course spent last night with him. Amy wrote to me saying there were so many people and nurses in the room at one time, it was standing room only. My heart was full of joy! How awesome to have so many people rally around him. Not only at the Hospital, but there is not a patient that comes into the office that doesn't hug me, bring me a flower and ask how Zack is doing.  It is 11 pm and the boys are still playing their game. I hate to do it, but will need to "kick" them out soon. The energy in the room is so amazing, he can once again be a kid, having a good time with friends.

Drama, drama, drama, drama, drama....

Zack with his 1971 Ford Galaxie

Zack is floating! and not just a little, we are talking tying him to the largest anchor with the heaviest rope so he doesn't fly away ( or actually his car!). Yesterday he picked up his car from Uncle Floyd. Floyd surprised us yet again and made the necessary repairs so Zack could bring his new baby home. He and his friends surrounded the motor, taking out a couple of parts, cleaning them and then re installing them. This morning, he woke early and drove the car to the local tire shop so they could put on new tires and later install a new exhaust system. They will be working on it while in the Hospital.

We arrive at the Cancer Center at 9:30 am. Once all the usual tests are completed, we get the good news that his counts are very good, so we are a go for the hospital stay. This time they have a bed ready for us by Noon and we head over to Mission. On our way there Lawrel calls us (another friend for years, her son Andrew and Zack have been friends since 1st grade). She says that she would love to bring us lunch, we graciously accept and within the hour she comes into the room with hamburgers, fries and drinks. She visits with us for a little over an hour as we catch up on our kids lives. As she heads back to work she gives me a great hug. I forget to stop and take time to REALLY hug. It's like I will fall apart if I let someone get too close. Note to self  "STOP... ENJOY THE HUGS!"

I head out an hour or so later to stock up on drinks and snacks for Zack's stay. As I walk into Walmart I see a hair salon across the building. I walk in (MY hair stylist Teresa has been cutting my hair for 25+ years) and there sits a young woman, half of her head is shaved and a large colorful tattoo covers her scalp, the other side is long black and pink hair. I ask her how she is with cutting short hair, she says "good", I ask "HOW good!" She says "VERY GOOD!" I reply with "GOOD ANSWER!". I ask her name "Taylor", great name! I sit in her chair and ask her to save what mess I have made of my hair. It turns out the back was an inch longer than the front (I never cut the back so.. that would explain it") Just $7.00 later, I have a great haircut and feel like one more thing is off my list. I simply have not had the time to make it to Teresa.

So I know we are not the Housewives of NY, NJ, Atlanta, Miami.. etc.... I know we are not the American Gypsies.....So WHY do I feel like I am in the middle of a "reality show", More like Survivor....Well let's just say in the middle of trying to get us packed for the next five day stay at the Hospital, having Zack's blood work, port set up, checking his weight, height and temperature, etc... the drama found us. I won't bore anyone with the details, as they have bored me and (God help them) anyone else around us today. The end result is perfect! My father in law, Big John has been relocated from Hospice care to a new nursing home in Asheville (just ten minutes from the Hospital). He likes the facility, he has his own room, can smoke to his hearts (or not) content, and the grounds are equally beautiful to those he just left. I am not being crude, though we all know I have that ability, I simply have been down this road before and have no desire to do so again.

As a favor to Linda, (whom has devoted most of her life to this man and whom we can NEVER repay for her years of care)  I went to make sure that he was settled into the new facility. It made sense, it was only a few minutes drive from my current location. Little did I know the emotions I would feel once I entered the building. The entire time, I couldn't wait to get back to Zack, whom I left visiting with his Cousin Nick, who came to visit with us after working at ICU in the VA Hospital all day. It was time for me to tell Big John about Zack. I enter his room, he is surprised and happy to see me. He looks pretty good (never a surprise for this man, he has a will like no other to live!) I sit down on his bed, he is in his power chair trying to fit his oxygen tank onto the back of the chair. He asks if I am alone, I tell him yes. I tell him that I need to share something with him, he looks at me and says "I can hear, my aides are working really well". "Good, well first let me tell you that Zack is okay," he looks panicked for a moment. I continue "Zack is okay, but he had a tumor on his leg, they were able to remove it, but he must have chemo and radiation for the next year". He tears up a bit and says "do you know how many people I have lost to cancer?" I say "yes, but Zack won't be one of them". "The reason I wanted to tell you this, is,  Zack can not come and see you, he can not play football, he can not return to school his Senior year." He starts to name everyone he has lost, and asks the usual questions, how long, is it really all gone, how is he? I answer them all and tell him we didn't tell him before, because we didn't want to make him weaker by the news. He said that he would not mention it when HE came to visit ZACK... That would be a first, for him to come to us! I'm not sure if that will ever happen, but it was nice to hear from him. I asked him if he knew what a blog was, he said something about computers. I tell him I have written a blog from the first day and asked if he would like to read it. I would be glad to print it out. (A suggestion from Shawn). He said he would. He then went into talking about his ailments and how he was feeling. My mission was complete. I unpacked his things and placed them exactly where he wanted them  and was just getting ready to leave when he asked me to find someone that can show him where to smoke. I walk down the lonely hall and meet a woman who tells me everyone is on the second floor. I go up the elevator and it is a whole different world. Men and women are wandering the hallway in their wheelchairs. I am immediately brought back to the days when my own father was in the nursing home his last six months. One woman stops me, tell me she is Mrs. Rose and could I please tell her where she is supposed to be? I assure her I will find out and return, another woman tells me to push her back to her room, so I oblige as she thanks me over and over only to meet with a male nurse asking if I am family. I tell him "no, I walked by and she needed me to push her", he said firmly "well, we don't want her in her room yet, she will go to bed and fall out", she is upset and just keeps saying "no, no, no". I tell her that this nice man is taking care of her and  he is making sure she is safe. I look at him and say "take care of her!".  I continue to walk down the hall to locate someone that can help me with John. Finally the first nurse that directed me to his room sees me and tells me to send him upstairs and she will direct him to the smoking area. I go back down the elevator and am greeted by him as the doors open. I escort him onto the elevator and show him where to go, he exits and heads down the hall when he is stopped by Mrs. Rose, she looks at him and then me and says "are you taking me home with you?" he laughs and as the elevator door starts to close I hear him tell her "No, that's my daughter in law, she is married to my eldest son Frank.........."  I exit the building and can't wait to get back to Zack, promising myself that I do not need to return. I plug in the Hospital into my GPS ( hey I'm still getting lost here) and half way down the road, realize it is NOT going to take me 7 hours to get back to Zack and I was heading in the wrong direction. The GPS was sending me to a hospital in Tennessee. I was only 2 minutes "out of the way", so it directed me in the right way and within 10 minutes I was back with my Zackman.

He was relaxing in the rocker and on his laptop. He asked how it went, I said "mission accomplished", he said " Good, now can you relax and we have fun for the rest of my stay?" "You got it!!!" I remind him that Frank will stay with him tomorrow night, so he can torture his Dad . He says "I LOVE my DAD"!! HE bought me new tires for my car!!! BRAT!!!! We have a good laugh! We just hang out while the rest of his medicine and fluids are dripping into his IV. He is feeling tired from the Benedryl, so I know it won't be long before he is asleep. I am reminded of my friends quote and it seems to be appropriate for this day, "everything is as it should be".... at least for now.

Wash, Rinse, Repeat....

Today started and it looks like, will end a normal day. Zack woke up late and has been in his room doing his school work most of the day. His throat is still not back to normal so he decided to stay home. His friend that he was supposed to go hunting with tomorrow had to go to Asheville today, when he returned he told Zack he broke his bow, so they won't be going. Zack says he doesn't care, but you can see he is disappointed. He was asked to go to the local football game last night, but that would be asking for trouble, so I had to be the "mean one" and tell him no. He said he knew that would be the answer, but figured he would ask just in case. We did let him go up to Drakes for awhile tonight. He needed to get out of the house for awhile as this is the Hospital week and he will be "trapped" for five days.

His eyes have been bothering him with his contacts in and for the first time I see dark circles under his eyes.  He says that's because he has been wiping his eyes a lot. That makes sense to me, but am glad he will be seen on Tuesday. Looks like we got his glasses just in time. He has been able to wear them while doing his work. The Doctors said that sometimes the eyes are effected by the treatment and it may be hard for him to keep wearing his contacts as much as before. 

Frank spent the morning fishing with Jeff and then had to remove the tree that fell on our driveway yesterday morning. I had decided to bring home the part that makes the popcorn from the office. This isn't just any popper. It was originally in a movie theater and after many mornings of making popcorn I decided to bring it home and give it a good pressure washing. Well, you know how that goes. I already had the pressure washer out so.. I might as well clean the patio, then the furniture, then the house, and when that was all done I was ready to clean and detail my car. We spend so much time in it now driving back and forth to Asheville, I would enjoy it more clean. Okay Okay, as my dear friend Nancy said she saw a car in NY with eyelashes and a tag that read Miss OCD.. and "thought of me". SO TRUE!!! (oh did I mention, I finally put the eyelashes on my car as well?) I know I was "supposed" to rest today, but truth be told, doing what I did makes me happy. It brings me pleasure and isn't life about what makes you happy? Especially in between all this crap that is going on? 

Once everything was completed, Zack asked if I wanted to go and see his car which is still at Shawn and Floyds house waiting for yet another repair before it is running. Since it seems to be "car day", I decide the drive would be good for us both and even though bookkeeping is still waiting for me, time with Zack was more important. We pull up their drive and the car is on the "rack" in Floyd's shop. We get out and Zack is surprised. I had asked Floyd if he could get it running, but thought he was not able to do the work, that we would have to move it to another garage. (Floyd's specialty is transmissions and with a bad back he isn't supposed to bent over or under an engine for long periods of time) The car is huge, it is perfect for him. I peek at the front seat and it is beautiful! This was the surprise early Birthday present from Shawn, Floyd and Darrick. This is also the car that Zack and two of our neighbors are going to paint for his Senior project. Right now he is working on the paperwork for the project. The actual painting will be within the month if I understand correctly. 

We are back home within the hour and once I put in the final load of laundry (they guys did their own YEAH!!!) I head into the home office and complete Franks business billing for the month. I still have to do other bookkeeping for him, but will be able to do that next weekend when we return home. 

I am hoping for a normal day for us all, tomorrow.  I want a normal and productive day at work. A normal lunch. A  normal homecoming to a normal meal with my normal.. okay well.. with my family.  I may be asking for too much, but I'm shooting for the moon  for us all. 

Which way to the Hospital?

Last night, just before bed at midnight, Zack comes up to me and shows me a lump under is right arm. It is the size of my thumb and is like a small ball shape. He tells me that is the only one he  has found, and just discovered it. Frank has been asleep for hours so I made an executive decision and called the Dr. Beatty whom was on call. He promptly returns my call and asks for me to take Zack's temperature. It is 99.5, we fill him in on the last couple of days, his count, the two units of blood. He says it was good for me to call, but feels it is from his deodorant, BUT.. wants us to come in first thing in the morning to the Pediatric Wing where he will be working. After I hang up I check Zack's temperature again and it is now 100.1. We had been advised to take him to the Hospital when it reaches 100, but Zack and I decide we are already going in the morning and there is no need to panic (even more than we already are). Zack immediately begins to hit his pillows, He is pissed! He is tired of the trips, the "set backs", the little things that appear to keep happening to him. I can't help him, I am just as pissed. I wake Frank and tell him what is going on and he offers to talk to Zack. I tell him he just needs to process and try and get some sleep, within two minutes Frank is back snoring... I think he thought I meant HIM!!! (smile) I sit on the edge of his bed and hang out with Zack for awhile, he finally said "you better leave Mom, or you will end up on the floor". I leave his room, pick up the phone and call Nancy. It is midnight and I have never done this before, but I know that she understands and has always offered no matter what time. I tell Nancy what is going on and start to cry, she assures me that it is probably something small from his deodorant but it is good that we are going in the morning. I am calmer after talking with her, I usually call my brother, but knew my mother would hear the phone and didn't want to panic her. I also knew Nancy would probably know what this could be. I went to bed and within a few minutes I was sound asleep.

We wake up this morning and Frank comes to tell me to look up the driveway. There, right across the entire driveway is a large tree. Zack and I were expected to leave in about 30 minutes to head to the hospital so Frank gets out the chainsaw and starts cutting away at the log. He created a large enough path for our car to get out. 

Zack and I head out, drive to Memorial Mission Hospital in Asheville, go up to the third floor Pediatric Wing and ring the bell to enter to unit. The double doors open and there at the front desk are the nurses from our previous stay a month ago. They are all smiles, welcoming us and asking Zack how he has been. Telling him how good he looks. We tell them we will see them next week, but are here to check out a nodule. They are already aware and Dr. Beatty is already there waiting for us as well. He walks us to a small examination room and checks out the area. I ask him if I was too much of an alarmist and he reminds me that "anything" unusual needs to be checked. He is pleased as he feels the area, and says that it feels like a fatty tissue or something that can occur with some deodorants. To be on the safe side, they are going to do a CT scan on Tuesday when he comes into the hospital for his next round of treatments.  Zack is now all smiles, we can leave and he can meet up with his friend and go scout an area to bow hunt for deer on Monday.

I drop him off at this friends, turn right around and go to Hendersonville to see Mom and Bob. When I arrive at Moms house, she is almost in tears. I am in a bit of a mood and realize I am tired and just need a few minutes to nap. After about 10 minutes I get up and am ready to start the fun part of the day. Mom and I go to Main Street and eat at one of our favorite Thai restaurants, the we walk through a couple of stores, head down to Steinmart to see our favorite manager Cathy, whom was off today and then head over to Sams Club for groceries and much needed popcorn for the office. (we have a movie theater popcorn machine and our patients are quite used to having fresh popcorn when they come in for their adjustments). We end the day with a "Belgian" break consisting of a banana split for me and nachos for Mom. We walk into Denny's and there all over the wall are pink ribbons, everyone is wearing pink shirts and asking for donations to the Susan G. Kohman foundation. When we are finished the manager walks up and asks if everything was good. We tell him yes, but have a complaint or maybe just a comment. We explain that it has been declared by President Obama that September is Children s Cancer Awareness month and yet they are supporting Breast Cancer. I explain that I don't have anything against breast cancer research, just that it has already so many supporters and that starts in October. Why are they not doing a fund raiser for Children s Cancer this month. He explains that all Denny's are doing this fund raiser and it is a competition, plus the owners mother or sister or wife had breast cancer so..... I explained that my 16 year old son is fighting Ewing Sarcoma and I'm tired of seeing nothing but pink ribbons all over the place. I want to start seeing yellow or gold for children, or for that matter support ALL cancer research.  He promises he will tell the owners and see what they can do. I pay for our food and leave a donation. He looks surprised and I simply tell him "I'm not against this, we just want equal time". He thanks me and says he will make sure the owner knows!

I arrive home to find Zack, Drake and Frank in the kitchen fixing dinner and smiling. Everyone is in a good mood, Zack looks tired for a day of running around but asks to go up and see Drake's new truck. I tell him he must return by 9 no later. He needs his rest. I "announce" to him and Frank that we WILL be telling Big John of Zack's situation. "He is well enough to bitch about what Zack is NOT doing (according to his opinion), so he needs to know his grandsons REALITY". They know when I mean business and they both look at me and agree. I call Linda (my mother in law) and ask if it's okay to tell him. She says she is fine with that, she said he was brought up to their house today to see his dog and when he handed the dog back to her he gave her the "finger". She said if  he is ornery enough to do that and tell you guys what Zack should be doing, he can handle knowing the truth. You have to know Big John to appreciate what everyone is going through. He is a man we all Love, but is not an easy man to Love. I will not speak too ill of him, but you can get the idea. 

My plan is to go to bed, relax, watch dumb shows on TV and wake up to a new day tomorrow. Frank will be fishing with Jeff, Zack will be scouting some more for deer, then school work, then car and I will be .... well.... I'm not sure, but it involves resting, some cleaning and some bookkeeping. 

Going to the fair in a Hazmat suit?

... Emotions are all over the place. I laugh, I cry, I get angry and throw things, then I am back to feeling "in control".  I wake up and all I want to do is go back to sleep and wake up a couple of days from now. Yesterday took any strength I had left for the week. I "thought" it would be routine, I "thought" no big deal, we go, we get blood and we come home. The reality hits me over and over again. Logically I think about a year from now when all the treatments are completed and we go every six months or so for checkups. But it's hard to be logical in the midst of all of this.

My sons friends are busy living their lives. The week days are hard, they are in school and he is stuck at home, in the clinic or at the hospital. Tonight being Friday is a busy night for his friends. He doesn't hear from them. He starts to get angry, not at his friends, they are doing what they "should be doing, what I would be doing" he tells us. He is angry because he can't be out there with his friends at a football game or the State Fair. We drive by the State Fair site every time we go for treatment, looking sad he stares as the rides are being set up and says "I can't go and I really want to go this year". It may not be that he WANTS to go as much as he CAN'T. Short of putting on a suit of armor he simply can't take the risk. As a Senior the "pressure" to have an amazing year is a tradition. The first thing out of anyone's mouth is "wow, he's a Senior, this is such an important year".  We try to get him to re focus on upcoming events he can participate in and remind him of his Hunting trip on Monday. We can't take the pain or frustration away and as a parent  that is torture. 

His color is coming back today, as is his energy. He has started to walk with Frank daily in order to get in better shape. He noticed that he gets winded sooner than before and decided to do something about it. We had a meeting with one of his teachers. Mrs. McCall came to the house and went over everything involving her class (personal finance) with Zack. He now understands how to use the various websites at his disposal to make homebound easier. I also discovered a new android app called myhomework. I installed it on my phone as did Zack on his, we also signed up for the website, so now he has a list of all his work and their due dates, once completed he marks it and both phones and website are synced. That way I know what he is doing and when it is finished (or not). It is the fourth week of school and I am finding out that it has taken the entire school awhile to get used to the new computer system, so he is not as far behind as I originally thought. 

Our "other" child Sidi

Tomorrow is fun day with Mom and Bob. I have been to the clinic, to work, sending out billing , paying bills, arranging homework, sending emails, making phone calls, arranging doctors appointments, cleaning house, doing laundry.... Super Woman wants the day off! (Ego much?). I am going to go an hang out with them, make a trip to Sams to get stuff for office and home, and maybe even get in a few thrift stores. Anytime I hang out with them is a good time. Everyone needs their Mamma every now and then. Zack will be doing his thing, preparing for the hunting day, school work and chores. Frank hopefully will go fishing after he takes Sidi to the groomer. Sunday will be chill time at home, maybe even a good movie with the family. 

"Life is like a box of chocolates"

Waiting for blood work

You never know what you're gonna get when you wake up in our house!
Zack is scheduled for more blood work today at 10:30 am to determine whether he needs a blood transfusion or not. We arrive promptly (well okay 10 minutes late) are greeted by Melanie who does the usual routine (weight, pressure, temperature). She asks Zack how he is feeling, he replies with "tired and don't want to be here, no offense". She looks at Zack and says "well I hope you won't need blood, but your lips are white and your color is pale too", and if your tired, that's a sign of low blood. She walks us to the back exam room and asks if Zack wants her to access the port or take blood from his arm. He tells her to go ahead and use the arm, just in case they don't need to give him the transfusion.

The transfusion begins

We are escorted to the next room to wait for the results and the doctor. About an hour and a quarter later the labs are back, his numbers are low. He will need two units of blood. We "kind of knew" this would happen from the beginning, but it doesn't mean when it DOES happen that we are prepared any more than when the words were first spoken. Zack noticed this morning that I was "edgy". I don't like the words they use, I don't like other peoples blood going into my kid, I don't LIKE ANY of this.. but it is saving his life and I am grateful for those that have donated the blood so that he can get healthier. Zack too has been shorter with me or maybe he is his usual self and I am just so much more sensitive today. I am on the verge of crying all day, but I have to hold it together and be the tough broad I am known to be. Of course, I want to be the whiny cry baby that is inside.

Holding the tube

Melanie orders the blood and tells us to go and have a quick lunch, in an uncrowded place and return by one for another blood test for his blood thinner. Dr. B comes in and checks Zack out. She says that we are doing the two units today and he should feel much better by tonight. In fact, he may have problems sleeping tonight. We are advised to keep a close eye on his temperature, if it reaches 100 we are to call them immediately and head to Mission Hospital. (They told this last week, but reminded us again today). Dr. B said that the blood clots are a genetic condition that Zack inherited from one of us. Knowing that both Frank and I have a family history of blot clots, I just tell Zack this is another reason to be aware of his body and do his best to stay healthy.

YUP... I am asleep!!

We return from a thirty minute lunch and are ready to start the transfusion. Melanie tells us it's going to be about two to three hours. I make myself comfortable on the long bench, as does Zack in his bed. I lay on my stomach and turn on the lap top with Grey's. As it turns out I fall asleep for about an hour and wake up a little more rested. Zack has managed to take a picture of me sleeping and is laughing at my position. At least I got him to laugh a bit.  He tells me we have visitors, it's Amy and Bill. They were in the area and couldn't go back to Brevard without seeing Zack. We had a nice visit, full of laughs for about an hour and shortly after we wrap up the infusion and are off until next Tuesday. Melanie tells us not to come in until then so that we can take some time off. We Love seeing them, but welcome the "normal" for a couple of days again before the Hospital stay.

As we head home my emotions are taking a hold of me. I am angry, tired, overwhelmed and just plain done!! I offer to bring home KFC and Frank says, "No that doesn't agree with me anymore, it's okay you guys get what you want, I'll find me something here at home", all I can think is.... OLD MAN!!!  I don't see that he is grateful and is looking out for what "WE" may want, I just get grumpy and tell him to get over the grump old man gig!! Funny thing is? I'm the grumpy "old" woman... Well maybe grumpy tired woman. But either way the whole conversation was silly. We opt out of KFC and just decide to grab fast food ( I know.. bad girl) and eat in car of the way home. We arrive at home after picking up his shots for the next three days (with insurance it is now $10!). It's about 7:30 pm and we are greeted by two smiling faces, Frank and Sidi (our shitzu). Zack's energy is picking up already. He received his stereo speakers for his car that he bought with his Birthday money from Mom (Meme) and can't wait to get to the car to install them.

I lay in bed, write my blog and find a new app for mine and Zack's phones where you can enter all of his homework and mark it as completed. This also syncs with the computer. I enter all of his work into the system and he is ready to begin. I think I'm more excited than he is about the app, but if it helps me keep track of his school work then it is well worth the time I spent putting in all the information.

My friend and her daughter are back home. They actually came home late last night and now it's just a matter of getting her energy and strength back and a follow up visit with a couple of doctors to see what is next for them. For now the family is back together and we know that has a lot to do with healing! The Love and positive energy in that house is boundless.

Big John is status quo.. "No news and all".......

How could I forget?

I guess under the current circumstances one could understand why I would forget one of the most important days in my life. It wasn't until I saw Mom blog and FB picture that I "woke up". Two years ago today , the best man in my world lost his 13 year battle with Alzheimer's... my Daddy. We were visiting "Auntie" Lee for much needed rest. I knew if I didn't take my mother out of town for a few days that it wouldn't be long before she would join Dad. We were told he could go in an hour or three weeks. The nurses at the home came to me and said "Your Mom NEEDS to go, she needs to get out of town or she will not be far behind him." That's all it took for me to grab her and run. We received  THE call from my sister who was with him. It was the day after my brothers Bobby's birthday and the day before we were to leave to return home. Dad is finally at peace. As much as I miss him, I know that he is at peace and looking at use with pride. He knows that we are following a lot of his words by keeping positive, knowing that Zack is a child of God and is perfect! I can remember when I would be sick, Daddy would put his hand on my forehead and I would immediately feel calm and at peace. I now do that to Zack when he is having a bad day, and can feel my Dads energy flow through my hands. I am grateful for every blue butterfly and penny because I know it is Dad telling me it's all just fine!

My BFF Nancy is back from her visit with her mother, we had a nice relaxing lunch catching up on everything. We had an awesome day helping many people that missed us on Monday, so we stayed pretty busy until closing.  As each patient walked in, they would ask how Zack was and telling me of their prayers and good thoughts for us all.  It was nice to be back at work, Lord knows I thrive on routine!

After work I go to the grocery store to pick up bread and salad. I am greeted by Bill and Amy (Zack's "other" parents.. he has many amazing people that claim him). I get yet another great hug! Bill (Drake's Dad) offers to help more with Zack's car, I tell him that he has already done so much and won't let us repay him. He says "I don't know what you're talking about, what ??" Again, could we be more blessed? Zack has touched so many more lives than he realizes.

Zack has had a headache all day, it dawns on me that he hasn't had caffeine in a couple of days, so I tell him to have some tea and see if that helps. By the time I return home he is bouncy and feeling so much better. He is at his desk working on his school work (I emailed the Vice Principal and asked for deadlines for Zack to complete his work, without self motivation he just sits and waits to do his work). The entire day we were flooded with emails from his teachers, offering their help to come out to the house to get him on track and offering deadlines with the idea if Zack is having a rough day / week, I would contact them for an extension. Zack just found out the his Senior project (painting his car) has been approved "hands down!", so he is back on the motivation train and excited! Our backdoor neighbor is going to work with him on that with him so he is going to be close to home for the majority of the prep work.

We are scheduled to go to the Center tomorrow for more blood work, we will then see if he needs a transfusion. If he does, this will be another first for us. With each "first" we know what to expect the next time and we have less anxiety.

Proud Mom and daughter! 

My friends daughter is not coming home yet today. I am pleased as I think the hospitals tend to "push" their patients out too soon. Her counts are better, but they wanted to do another EKG to see if there is any change in her heart. I want to go to the Hospital and just hug them and "fix" everything! But again.. all I can do is make sure they know we are here for them!

 Big John... well, God bless him! The man is tough!

"No Kitchen Patrol" Doctors orders!

Today was "Vincristine" day.  Zack started a soar throat yesterday, has been having headaches and is pretty much tired of not feeling well. We are greeted by Ms. Perky herself, Angie. She is always so cheerful, even with her father undergoing chemotherapy and not doing well. She always manages to have an awesome greeting, smile and hug waiting for us. When we walk in the door, it is just like coming home to family, only with lots of needles, bags full of fluids, a scale, arm cuff , thermometer and bags full of colorful fluids with a bright yellow labels marked Biohazard.  But I digress...

Angie does a swab of Zack's mouth. Their concern is strep. There are also signs of Thrush which is not uncommon with this treatment. She inserts the needle into the port and begins with his treatment. Once the  treatment is complete, the results are back from the swab. He does not have strep, but does have thrush which could turn into sores and become painful. We received a prescription for two mouth rinses to help in the healing. (we later discover that they taste horrible and though they are meant to help,  Zack is not thrilled with the immediate results of loosing his dinner). Doctor B came in today. She is the female Doctor of the trio and is a great with Zack and the other children under their care. Zack's number count came back very low, so no going out in public places, no one around him that could possibly be sick and lots and lots of fluids. We are also told to take his temperature if the headaches continue and if it is 100 or over to call them immediately. We were originally scheduled to return on Friday, but now must return on Thursday morning for possible blood transfusion, (also not uncommon). We won't know until they do his blood work that morning.

Once the prescriptions are called in ,we are free to go. On our way out the door we are all teasing Zack at the nurses station. Doctor B looks at Zack and says "take it easy the rest of the week, do your schoolwork, but no dishes!!" I look at her and she immediately says "No No No, I was just kidding", we all get a good laugh and I tell him of course he can take it easy.

We stop at the pharmacy only to find out that one of the medicine's needs to be mixed so it will take a couple of hours. While picking up lunch on the way home, we stop by to say hello to one of our old friends from Scouts, Jason G. He asked to come out to the car and say Hi to Zack if he promised not to breathe on him (funny but sad at the same time)  It's nice when Zack can see some of the old gang.

I drop Zack off at home and head into work for a couple of hours to prepare for tomorrow (the first day of work since last week Thursday). It felt good to get back to the office, to get everything ready. I organize some of the insurance documents, clean up and head out again to pick up the completed Prescriptions.

What could have been a $300.00 prescription turned out to be $35.00 because of the new insurance. It felt so good to hand them the card and know that a large portion would be covered. Zack had asked for some different drinks, (when you drink nothing but water all day, so need some variety) so I pick up Gatorade, a quick dinner and head home.

Though I didn't do a lot today, I feel drained both emotionally and physically. I wasn't able to make it to the Hospital to see my friend and her daughter. They are keeping her daughter in ICU for another night. We wont find out the results of any damage to her heart for a couple of weeks. I was worried about being in that environment and catching something. My friend being so understanding tells me to "look out for our boy" and "I'll look after our girl".

No news on Big John, so we assume all is the same with him. The rest of the kids went to see him last night, so I'm sure he had a wonderful and full day .

Big John and Frank

Keeping the faith!

Sunday, August 31,  2012

Sunday was a pretty normal  day. Frank was able to go fishing for the first part of the day. I was able to get stuff caught up around the house, we finally got the base board installed after seven years of "forgetting". It was fun for me because I have never used a band saw before, I actually even learned how to cut at a 45 degree angle. My usual great therapy is also to rearrange the living room, so I threw that in for good measure.

Zack has been feeling pretty good today. He worked on his schoolwork most of the day, (or at least that's what it looked like ..smile) The rest has done him good as well. The pattern has been for him to run around non stop on the days he feels well, but then he gets too tired and it's hard to tell him to pace himself when his own mother doesn't do it! The rain has kept him from working on his car, but the rain is a welcome relief for us since the water tables are down so low.

One of my dear friends child is in ICU at the very same hospital where Zack gets his 5 day treatments.. She developed several blot clots in her legs after a biopsy on some polyps. The clots moved up into her lungs and heart. She is 18 years old and an absolute sweetheart. We have been standing near the phone waiting to hear some good news, but her progress is slow. The Doctors say they need to wait for the clots to dissolve before they can see what damage there is to the heart. It is so hard to hear the despair of my friend. She just sits there waiting to see what is next as she watches her daughter'e weak state. I want to be there to take care her, to do whatever I can to make this easier for her and her family, but there isn't anything we can do. We have asked for community prayers, gone online to ask for more prayers. At this point that's all "we" can do.

Trying to continue on with our "normal" day, we three sat down and watched a movie. "The Hunger Games", okay maybe not upbeat and happy happy (DUH), but we like Sci Fi and as far as that goes, it was pretty good. It was nice just to sit and enjoy the simplicity of watching a movie.

Monday, September 1, 2012
Since we didn't make it to see Big John (Frank's Dad) yesterday, Frank and I went today. We had a nice relaxing lunch and as it turns out the server was a man that my family has known for 20+ years. His name is Michael and he remembered back when we had our Antique Shop. He remembered my name as being either Sabrina or Samantha (both of them were witches, was his comment) I get that a lot, so I laughed and told him he wasn't the only one that has said that before. It was so nice to see him, with a high five and big hug.

 When we arrived at Elizabeth House to see John, he was sitting outside on the patio smoking. (his favorite past time). We walked the perimeter of the building and enjoyed the beautiful landscaping. John loves it there, has a beautiful room and says it is the nicest facility he has ever been in. It's good to see him that happy. He knows that he may not be around  much longer, but at least at this moment he is enjoying where he is. He asked where the "curtain climber" was. I explained Zack was doing his school work. He asked about his playing football, I told him he decided
not to do so. Frank had decided earlier not to tell John about what Zack is going through and everyone was in agreement (we didn't feel he needed to deal with another thing), the problem is, John doesn't drop anything. He kept saying how Zack needed to do this and that, and he just needs to buckle down and commit. I wanted to grab him by the throat and say "you don't know what the Hell you are talking about" "You don't know what the Hell HE is going through right now". I look at Frank who looks so lost and turn to John when a feather falls right in front of our faces, I laugh and show John the feather (which of course makes him forget the conversation).

We strolled around the grounds and he and Frank were having a contest over who knew the most plants. Well, since Frank is in the business you can guess who won. It's hard to witness their father / son relationship. As Frank was walking around, John was telling me everything that Frank could learn from the landscaper. I tell him, the landscaper could learn a lot from Frank. Being totally spoiled by my parents and recognized for anything and everything it's hard to witness first hand as Frank again tries to be recognized by his father for his achievements.

We visit for about an hour and are sitting back out on the patio, when a group of five older people come out and start talking about their mother. Having met one of the men earlier, I know that the mother has advanced stages Alzheimer's and has pneumonia. It's hard not to hear them as they are right next to us. One of the women leaves to check on the doctor and the others are talking about how she won't let the mother go, they are worried about her and don't know how to explain what the mother is going through. The conversation continues when the woman returns. She looks so lost and sad. I walk over and introduce myself. I ask if I can "intrude", and explain briefly (yes I said briefly) my own history with my Dad and Alzheimer's. I try and offer some support as they explain where their mother is at this stage. I offered suggestions as to the questions to ask the Doctor and answered questions they had about their mother not eating. It was like I was talking about my Dad. The one woman they were most concerned about finally broke out and said "I'm not ready to loose my mother", She asked how I dealt with THAT!!! I told her I could only offer my own personal feelings and to me it was not about "me" and "my" needs, it's what is best for my Dad. "Would her mother want to continue with feeding tubes and wires," "what are her mother's wishes".  If she can answer those questions honestly then the decision is not really hers, but her mothers. I know in my Dad's case he pushed away the food and water. They all said their mother already said she wanted to go, but was worried about them. She asked "what do I tell her then?" I told her "that's when you give her a great big hug and kiss, and even if you are lying, you tell her you are all going to be fine and it's okay to go". Frank was motioning for us to go. (John was starting to get grouchy) so I apologized if I was overstepping their boundaries.They said that I must have been meant to be there, they haven't gotten this much information from anyone at this point they have been waiting all day for a Doctor to come and talk with them and they appreciated my input. I told them that their mother just got arrived and they need to give Hospice a chance to answer all of their questions. They are awesome people and know what they are doing, before,during and after care. Hospice helped us and my sister during his last days.  They said "yes, but this has happened to you and your family, you know what this feels like, which is different". One of the ladies must have been a school teacher, she looked at me and said I would give you an "A". We all laughed and I gave them one last goodbye.
I almost didn't go today. I have said so many goodbyes to John and each time gets harder and harder. That's why Zack didn't want to go again and we respect that. Now at least I feel that I was able to help someone that needed something more than even John. As we exit the building, I stop at the front desk and tell a nurse about John's habit of "lighting up" while his Oxygen tank is on. The nurse get HIS nurse and as we are leaving, she is telling him the rules.. AGAIN!! .

Being back home,  Zack has two of his friends here. He is feeling well enough to go and install the new parts in his car. His hope is that he can drive the car home. (I actually haven't seen it in person yet). Tomorrow is another treatment.  We have named them all, this one is the hair removal treatment. Vincristine. It doesn't make him as sick and he doesn't have to return until Friday for labs. While he has his treatment, I will go see my friend and her daughter who are in the Hospital across the street. Zack won't be able to go as protection against getting sick. Even if his numbers are good, there's no reason to take a chance. Next week is the Hospital stay again.

After an emotional day, my plan is to sit and watch TV and just relax. There are so many things going on in our lives that we can't control. Keeping the faith, positive thoughts and friends and family support are key ingredients to surviving! I we are so lucky to have it all!

Relax..... well maybe a little

Friday, August 31, 2012
Zack had a rough day today. He was very nauseous all day and we realized he didn't have enough of his medicine to take every 12 hours like he should have. I was able to pick up some of the Kytril at the pharmacy located at the lower floor of the clinic, while Mom was at her Doctors appointment.  It worked out perfectly. Though Zack was sick most of the day, he was able to get out for a little while this morning and later in the afternoon to drop off and later pick up his carburetor. Another amazing gift. Drake's Dad Bill and Drake's Grandpa would not let us pay for the rebuild, No matter how hard Zack tried, he said they wouldn't hear of it! So many people are spoiling us with their Gifts, Love, Support and Prayers.

We know Zack is not feeling well when he didn't immediately go and put the part on the car. He came home and went back to bed. Though this week is a lot better than that of last month, we are reminded of exactly what he is going through. I notice that his skin is ashy, a telltale that his hemoglobin is off. Zack gets mad when I point out his skin color, "today you're color is soo good", or "you're color is off a bit." So I told him I wouldn't point that out any more. I have a little list in my head of things that irritate him and try my best not to say or do those specific things. I do, however, tell him that We are learning all of this with him and are trying to respect what he feels, though we may not be always be on target. We can be an emotional bunch these days.(I know understatement.)

It felt so good to call all the medical offices with Zack's Medicaid number. We received it for the past two months and then the Inclusive Healthcare kicks in with a deductible and copay. When this first happened we thought we would have to come up with all of the money, so this is a huge blessing. (.repeating myself, I'm sure). After Medicaid pays "their" portion,.we just have to wait to see what our balance is. We anticipate around 20,000 - 30,000 between the deductibles and co pays. At least we found some help and Lord knows we have all paid into the "system", so guilt is not in my vocabulary.

Grandpa John has been moved in to the Elizabeth House. He is comfortable and being well taken care of so that makes it a lot easier on us not worrying about his care, and gives his wife and Billy a chance to catch their breath. We do have a lot going on in our lives and trying to fit everything in, isn't always easy. One thing I know for sure, it was so awesome to have the day with Mom and later dinner with Rhonda when she joined us.  A little bit of normal in midst of all the chaos is a great thing! We went to a couple of thrift stores, then her appointment. Her doctor determined that she is tired and dizzy because her blood pressure medicine is making her pressure too low, so he lowered her meds and we go back in a month to recheck her. After the doctors appointment, a visit to Steinmart and then dinner.

Saturday, September 1, 2012
I wake up this morning with a smile on my face. Of course a little bit of retail therapy never hurts, but spending the day with Mom, just being our regular selves and just plain catching up. It's very hard for her to hear on the phone, so we don't talk that way very often. It's kind of scary what she comes up with from some of our conversations. I can't imagine what it's like not to hear, she even handle that with grace. Mom just smiles and has the sweetest look on her face. I know immediately when she can't hear. Even on the phone, she becomes quiet. I am so lucky to still have her in my life. I'm not sure I could have handled this as well without her in my life.

Zack is feeling much better today. He is still pretty tired and says that everything tastes like medicine. No matter what he drinks or eats he says he says it tastes horrible. I was able to get his first dose of medicine which is now covered by his new insurance. It felt so good to go in and afford to pick it up for a change. Yesterday's one dose was $20.00, and now with the copay that will cover 60 pills. He still has to take the shots twice a day for blot clots, though his arm is back to "normal". We are going to ask if he still has to continue with them since he seems to be better. We trust the doctors with his care, but it never hurts to ask.

Frank has been working around the house to get things caught up (outside). I started working on the inside (with time off from work until Wednesday I can play catch up as well, of course the next treatment starts Tuesday). I am finding out though, that I am far more tired than I "thought" I was. I managed to hang up lights in the bathroom that I found at Habitat Thrift Store, did the dishes and that's it. I had to lay down and take a long nap. The nice thing about that was Zack and I had a chance to watch a movie together and just chill.

Our plan is to chill the rest of the night after dinner (Frank and I managed to actually cook). Tomorrow is bookkeeping, clean rest of house, laundry and see Big John in Hendersonville. I'm hoping that Zack will feel better tomorrow, we already see a bit of a change in him tonight. He was able to eat dinner and seemed to enjoy it. He would like to go and work on his car more tomorrow and get it to the house, let's hope he will feel well enough to do so. Of course he still has school work to complete and then Tuesday will get his new list from school.