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.

"Big Wheels Keep on Rollin"..

Well, Big John is still with us. He took a turn for the worse at 4:30 am when he woke and started to pull off his oxygen mask (he actually broke it), the nurse gave him some morphine for the extreme pain he was in and some medicine for his heart rate. This morning he ate a couple of biscuits and though he had a hard time talking and couldn't hear (he has been very hard of hearing for years), Jamey spent the night there and Mitch took over this morning (both his children and Franks siblings). Mitch told us the Doctor came in and as soon as tomorrow John will be brought to Elizabeth House in Hendersonville, which is a Hospice home. Mitch asked if we were coming to see John again today when Zack was done with his shot, but Zack had asked not to go. He said "Mom, I already said goodby last night and I don't want to see him that way anymore" I totally understand and tell him he is under no obligation. Mitch tries to explain that John is coherent and is nothing like he was last night, but I stand firm for Zack and tell him It's not about seeing him, it's about having to say goodbye over an over when we know it's only a matter of time. If Zack changes his mind down the road, he will be able to go (if his counts are up).

Zack has had such a great week. The new medicine is working so well to keep the severe nausea at bay. When we think back to just a month ago, after Zack's first week of treatment, he was in bed very sick, barely able to do anything or go anywhere. This week, he is running around with his friends, working on his car and in very good spirits. He had his Neulasta shot today and we were in and out of the clinic in a matter of ten minutes. We went and picked up his glasses (which are back up for when his contacts act up from the treatment), had an early dinner and now are home. He is chilling in his room and I'm already in bed and relaxing. Frank is on his way to the hospital to visit with his Dad for awhile.

Tomorrow Mom and I go back to Asheville to see her Doctor. Trying to fit this in between the treatments has been interesting and she is such a trooper to be so patient while I work it all out. We need to see what is going on with her dizzy spells and just a routine 6 month exam. The rest of the time we will just hang out, see a couple of stores if she is up to it and have some quality time together. Zack will stay home and catch up on his school work. He wants to go fishing with a friend this weekend and has an outdoor BBQ to go to tomorrow night (he can handle this as long as it is out doors and doesn't get too close to anyone).  So, in order to go we have told him he MUST have his work caught up.

He will also be getting his carburetor back and should be able to get the car to the house. All in all it has been a great week. I am a little worse for wear at this point, so I need to get caught up on my rest. Doc Steve teased me today telling me my new nickname is "LINK" . "A chain is only as strong as it's weakest link", lately,, I have been a weak link.  (personally, I think I'm "missing" a link) Ha ha... Anyway, we had a lot of fun with it today. Hey, again, we gotta laugh!

Going to rest now and so looking forward to my day with Mom tomorrow. We are off work until Wednesday, so I will have plenty of chill time.!

Emotional ...........

Zack and Frank headed out for today's appointment. The new combination of anti nausea medicine (Kytril)  is really helping Zack feel less ill from his treatments. Though his color is gone (his skin is very ashy) his smile is bigger than ever. He is knocking out his schoolwork while at the clinic and thinking about the next step for his car.

We receive a call from Uncle Floyd who is getting his car road worthy. We called in the heavy guns as Zack was really not up to making all the repairs himself. (too tired) and  I need to get my car back. Floyd (who is an amazing transmission specialist) adjusted the timing, set the points and ordered a tube kit. He said Zack needed to fix the tail lights and drive it over to Kenneth (local garage) to get the exhaust replaced. He didn't think the carburetor needed to be replaced, but it turns out the it does need to be rebuilt. Zack found someone that can do the job for about $25.00 so that's not too bad. He is frustrated that it needs this much work, but forgets we only paid $700.00 for it and it is from 1971. He will learn patience for sure.

Frank was able to go and see his father at the Hospital across the street. He is not doing that well, which we expected. They are trying to locate a nursing home to move him to. It is impossible at this point to bring him back home. It has been a 24 hour job for both my mother in law, Linda and her son, Billy. They (like my mother and brother had done for years with my father) take turns "watching over "him. One would stay up all night while the other slept and alternate shifts. Being a heavy smoker he only found comfort when smoking, but he would also fall asleep with the cigarette, he is also very needy and would shout in the middle of the night for someone to get him water, turn on the tv, turn off the computer, etc.... Exhausted, Linda has finally decided (and the Doctors concur) that it is time to have 24 hour care. I remember even with Mom how easy it was for people to say "take care of yourself!", Having never lived in her shoes (until recently and NEVER to that extent) I can tell you first hand.... That doesn't happen. YOU are the last one to be taken care of and it catches up with you too soon. My fear for Linda and Billy has been their own physical illness (Billy now has a hernia from lifting John up from the floor when he has fallen). Though it is never easy to "place" a parent or loved on in a nursing home, sometimes it is necessary (or the caregiver will be gone before the patient). Linda and Billy have our support 100% and we "kids" are so grateful for the Love and care they have shown Big John for so many years. (Update: we just got a call from the hospital and they don't think he is going to make it through the night. I have called the doctor on call to see if  Zack can go and see him one last time and he said Zack's counts were up high enough to do so, and offered his condolences)

Zack is on his way home from working on the car with Drake. He wants to go and see his Grandpa for the last time. We never told John about Zack's "condition", we felt he didn't need to worry and Zack too was adamant about him not finding out.

We knew this time was coming for a long time (we would tease that he has more lives than a cat). But somehow it's hard to face the fact that he may not be with us any more. I know for sure that he will be in a better place and deserves to be at peace. He has had several hard years of pain and discomfort. Signing off for today. Love and hugs to everyone in our life!!

Video created by Zack last night!

http://www.youtube.com/watch?v=sZnjvegpjLU&feature=youtu.be


I received this video from Zack this morning, didn't even know he was doing it. Song he chose is funny!! LOL

Where is Waldo?

And the results of last night's head shaving are in:  Still as cute as ever!!! 

Zack and I head out early for the start of his second month of chemo at the Clinic. His appointment is at 8 am and we know we are in for the entire day. He is in a great mood in spite of what lies ahead. We are greeted as usual by the smiling faces. Zack has them all wrapped around his little finger. The nurses and doctors told me they look forward to seeing him, he is so cool, funny and such a great kid. 

They start the usual protocol as Zack begins his school work. He set up his laptop and books on the bed and begins to write with his Senior project letter of intent, he then moves on to Sports and Entertainment, then English and ends with Psychology. I told him he can't do anything this weekend if not caught up with all of his school work, so he is determined to get it done. (Hey you have to find motivation somewhere). He is anxious to work on his car and bring it home and it's not beneath us to use everything we can. 

I set up the desk against the wall with my laptop, medical bills and thank you notes. We never even turned on the TV today (a miracle in and of itself).  Since we already are receiving past due notices , I wrote a letter to all the doctors, hospitals and anyone whom sent us a statement for services advising we are awaiting confirmation of medicaid for the first three months.  I felt it better to keep everyone posted on the process and it's always better to put it in writing for our file. Communication is key!  I called the new insurance company that begins September 1, 2012 and confirm that Mission is indeed in network and they cover the medicine Zack will need in the future. Everything is a go! The lady is very nice and says she wishes Zack all the best.

We are visited by a Chaplain named Buddy. A tall thin man, very quiet and calming. Zack said he thought him to be awkward. He asked how we were doing, what Zack was in for. We just sat and talked (you know what I do best). Next thing I know Zack is telling him where all I have lived, He asked what life was like in Belgium, then Spain. Religion is not mentioned until he asked Zack how he feels about his situation. It was cool how he handled it, he just looked at said "as the good book says in Matthews, it sucketh!". We all laughed and said "yea pretty much." He asked how Zacks friends are handling this and Zack said "they all pretty much have someone in their family that is dealing with some form of cancer, so they are used to it." I  mention that we are not Christian, but spiritual prayers , we study several beliefs and we feel that though this is very hard on Zack, he has never questioned "why me" and knows that he is going through this for a reason, perhaps to be a teacher or student, or both. The Chaplain was very kind and said that we "seemed" to have a very good way of looking at the situation. He offered his services anytime we need to talk and thanked me for sharing my "stories" with him.  Was he just being kind or or was he sincere? I think both, but it's not up to me to judge that. We both appreciated his visit.

It is around 11 am and I decide to walk over to see my father in law at Mission Hospital, we are at the Cancer Center anyway, so why not? While on my way there (a beautiful walk across the street and up the hill) I receive a call from my friend. They are STILL waiting to hear from pathology about her daughter. She is distraught and as I try and calm her and be "logical" my heart is sad for her. I remember the waiting game oh too well and it is torture. There is hope that they will hear something by the end of today. (it turns out it won't be until tomorrow).

Franks Dad (John) was brought into ER at 7 PM last night (I did not know this until the end of the day, I thought  he was brought in this morning). He was having a hard time breathing (his health has declined over the past several years, so this is not a surprise) I expected him to be admitted to a room by now. I go to the front desk and ask what room, she says "he is in ER".. STILL? I go to ER and ask the security officer that is guarding the door, 
he says "we don't have a John Fisher here. 
He calls back to the room and tells me "he was discharged" 
ME: really?? who picked him up? (mother in law had to return home)
HIM: "a woman on crutches" 

ME: really? we don't know anyone on crutches!

HIM: "are you sure?"

ME: Yup, pretty sure!

HIM: "well maybe he took a taxi home"

ME: a one legged man that isn't even sure where he is? don't think so! FIND MY FATHER IN LAW NOW!!!

Him: "let me call admissions", "nope they don't have him either".

ME: "well should we call missing persons?" Isn't it up to YOU guys to make sure you don't LOOSE A PATIENT!!

HIM: "Let me get one of the nurses from ER here and they can show you his empty room."

ME: "real reassuring, how is an empty room going to help me?"

HIM: "well you can see he isn't there!"

Me .........................................

A male nurse comes out to meet me and brings me back to "the" room, clearly there is no one there. At this point pissed at the run around, I ask if he wants me to feel the bed to get a "psychic  feeling for where he really is?" His response? "you're funny". (YOU WANT FUNNY??) All of a sudden the nurse says "oh wait, I think he is in here". We walk to the next room and there sitting in the dark in the edge of a gurney is Big John. There he was sitting up at the end of the gurney. He was slumped over (his favorite way to sleep) and lethargic. He sees me and smiles muttering something that I can't understand. He tries to undo his IV and when I gently tried to remove his hand he clenched his fists and took a punch at me, the good news is I'm pretty fast and jumped back just before possible impact. It hits me, it really looks like they actually forgot he was in there. I immediately call for a case worker and nothing. I go out to the nurses station and demand to see the head nurse. In walks a sweetheart of a nurse. I tell her John needs medicine for his headache and a patch as he is a pack a day smoker. I tell the nurse that  I have to go back to Zack who is at the Cancer Center so she needs to get a companion to stay with him until he is brought up to his room.  She apologizes and says they are our of rooms and are waiting for a bed, but in the meantime she will personally make sure he is moved into a larger bed in the other section of ER until a room is ready. I feel more confident now in leaving and let the nurse know that I am just across the street and WILL show up at any minute without warning to ensure he is being well taken care of. Oh yea... did I mention the ER called my mother in law at 6 am to ask when he had a pacemaker installed? She asked WHAT PACEMAKER??? Scaaaaary!

I exit the building to head back to the Clinic. I am turned around, they had be leave from the front of the hospital and the clinic is towards the back. I'm filling my mother in law in on all the details (she had been up for three days with him and needed rest) and we start laughing as I tell her I am lost. I walk up and down the hill, around the corner, through three parking lots and finally climb on a rock wall to see if I can spot his building. There it is!!! I see it!!! Linda laughs and says, "you go and find your child". She thanks me for taking care of John. I assure her that he is going to be well taken care of now. 

I reach the clinic, pick up a couple of sandwiches, drinks and chips for Zack and I (hoping he is up to eating, which he was) and tell him of my journey. He was pale, but in very good spirits. He hands me a piece of paper and is smiling. His count is back and he is doing really well. His body is still creating whatever he needs to protect him.  He is excited! He is also determined not to get sick this week, we have a new mixture of medicine that seems to keep the nausea at bay. At 1 pm I had an interview with the National Sarcoma Foundation. The interview involves both Zack and I , so we are both on speaker phone sharing  Zack's story from beginning to end. We are now included in their registry. The purpose of this is so that they can collect his medical information and keep it on file to compare to other Ewing Sarcoma patients. They also offer information on new treatments, trials and locations with the best care.

It is nearing the time to head out (around 5 pm). As I'm sitting there thinking about the Kytril ($223.00 for 60 ) I realize that Saturday his new insurance kicks in so I go to the Doctor and ask if she can give us enough for the week. Why spend the money for that many pills if we can get it for a co pay this weekend. they agree and get us enough for tonight, tomorrow when the pharmacy opens they will get us a couple more. I am finally using my head, or maybe it is that I'm finally able to concentrate. Yea, let's go with THAT!

We exit the clinic and make it home only stopping once when Zack was a bit nauseous. It is now 9:30 pm and he has taken three pills (2)Kytril (anti- nauseau) & (1)Septra ( fights infections) , drank his Mezna (sp) which coats and protects his bladder from the chemo (VERY NASTY TASTING STUFF (ABSOLUTELY DISGUSTING!!!!!! -written by Zack), and given himself his blood thinner shot. He is ready  to go with Frank for a shorter day of treatment tomorrow. Frank will go and see his father while there and make sure he is still okay. We are lucky that they are in close proximity, so we can take care of both, though Zack remains our main priority.

What a difference a day makes!

Karen (we refer to her as one of our guardian angels) has been our Social worker pretty much from the beginning. She has been by our side during each clinic visit and hospital stay. Anything we could possibly need to know, Karen is there with the information. Thanks to her we were able to get the shots for Zack, got insurance, hooked us up with an organization that helps with food and gas while at the clinic and hospital. Helped us with paperwork needed for school, letters from the doctor for insurance, on and on and on... Words can not describe how grateful we are to her. (and Miriam whom I met on first day) It's amazing how "easy" things seem when the right people surrounding you. Now if Karen would bottle up her energy and share some with me!

  

 

 Last night Zack was extremely pale with dark circles under his eyes and white lips.  His mood reflected the upcoming week. This is the treatment that hit him the hardest his first week. He was angry and missing his school friends. One of his friends is taking several of the automobile classes that he was signed up for and shares a lot with Zack. He feels like he is missing out on a lot. We remind him that he has next year to take all automotive classes and will be able to focus on his future. This year, he must graduate High School and  focus on staying healthy and heal! I also remind him not to begrudge his friends their journey, though I totally understand his feelings. He says he doesn't begrudge them anything, he just wishes he could be there with them. Painful for a mother to hear when she again, can't fix it!

This afternoon when I pick him up for his blood work, his color is back to normal and he is in a great mood! Though he's not looking forward to tomorrow's treatment, he is ready to move along. The numbers come back great! We can resume as scheduled (when his count is down, they hold off on treatment for a couple of days). The doctor insists on him taking the Kytril for his nausea and I tell her that we already decided no matter how much it costs we would get the for him. On the way home I call the pharmacy and discover that the medicine is $223.00 for 60 pills (not 7 as previously advised). They won't have it in until tomorrow, but that will work out perfectly as we can pick it up on the way home.

Zack brings me back to work to finish up the day and meets his friend at his car to work on it a bit. It's good to see him in a better frame of mind. He and Drake are putting on his front and back bumpers and working on the chrome. They are covered in all sorts of dirt, oil and anything else they could get their hands on, but both with big smiles and a sense of having accomplished something further towards the refurbishing of his car.  Zack admits that for the next couple of days, he is more than likely not going to be up to much, so he wanted to get as much done today as possible.

They pick me back up from work to bring me to the local Red Cross blood drive.(man do I miss my car and I'm STILL waiting to put the lashes on the headlights, which says A LOT about my patience level right now)  I committed to donating blood at a friends church, something I have done only once before and "kept meaning to do again". Determined, I set up the appointment awhile ago and am so relieved that I am again here. Having an even greater understanding of the need of blood for transfusions, to donate platelets and set up for the bone marrow registry (though I'm not sure how to do that just yet) I am more committed than ever to continue donating on a regular basis. I have already set up an appointment to meet with someone at the hospital when Zack is next there to donate platelets. I'm going to be there anyway, so why not help someone else while I'm there.

I get home and start to work with Frank to finish up dinner when I look through the mail. Benna and Seth (Aunt Lee's daughter and son in law and dear friends) have sent us a generous gift.  They live in Boston and Benna was one of the first people I contacted about us possibly going to the Boston Children's Hospital (listed as one of the leading Hospitals for the treatment of Ewing Sarcoma). Since they are involved in the community I knew that Benna could do some additional research for us regarding the best care for Zack. Thankfully, we were able to stay locally, but our decision was clearer when we knew the same protocol was offered around the Country. Benna and Seth graciously offered for us to stay in their apartment, which is close to the hospital, should we have decided that is where Zack needed care. More guardian angels in our lives.

Drake joins us for dinner (my crock pot beef stew), mac and cheese and salad. Once we all  finish and Drake heads home , Zack heads into the kitchen to do KP (much to his dismay, he still must do all of his chores.. unless he is in really bad shape). He takes a shower and all of a sudden he calls me to the bathroom. "Mom, come here!" He has shaven the front of his head. "I'm tired of the patchy spots all over my head". He has cut himself in a couple of places and having seen enough blood today to last awhile, I become squeamish. Luckily the blood thinner doesn't cause him bleed too much. He asks for my help to shave the rest of this head. Hello??? "WHO IS THE BALD ONE IN THE FAMILY?" I call Frank in to help finish the job and he does so with the expertise he has shown for years after doing his own head. Zack won't let me take a picture until tomorrow, so....more to follow!

Room with a view

We finally found the time to complete Zack's room. The collectables are back on their shelves, Zack's artwork stands out more than ever on the dark green walls, speakers are hanging  next to "Grandpas" record player (a gift from Meme and a treasure to Zack). We took down his door (a creation Zack did a couple of years ago) and hung it up as artwork. . A framed drum head hangs directly above his desk, autographed by "Stained" and "Red" from the first concert he ever attended.

 The room now appears larger than before with the wood floors installed and the carpet removed. The original purpose of all this was to sterilize his room. The carpet was so old and once removed, black mold (killed with bleach) and extreme dust from the deteriorated padding appeared. The large desk which served more as a storage area than desk was replaced with a simpler style. Zack prefers not to have all the cubicles, less locations to "stash" clutter. The black curtains replaced with nothing but natural light entering the room.

With all of the posters removed (at Zack's request) I found another piece of his artwork, this was completed a year ago at SCAD (Savannah College of Art and Design) when there for a summer program. The matting is also painted to blend with the painting. Grandpa would be proud!


Knowing this week could be tough, We gave Zack more freedom than usual this weekend.  He wanted to hang out with his friends and since keeping his spirits up are just as important as the treatment, what better way to accomplish that.  Frank did all the all the laundry and grocery shopping,  buying meals we can put together in the crock pot and have ready when home from work / clinic. I did my usual room by room clean up, when I would get overwhelmed I would return to the "clean" room and smile, then go back to cleaning with more motivation.

Zack spent a couple of nights at Drake's house and when he returned home tonight, his color was off again. His lips turn white and skin becomes quite pale (result of his hemoglobin).  He's in a pretty bad mood right now, He wanted one of his friends to go with him tomorrow for his blood work, but they are in school or working, so I've decided to take him. The Doctor said  they may need to schedule a blood transfusion and if it happens tomorrow, I will need to be there anyway. It's hard to see him this way. I remind him we are already one month done, look at what has been done not what lies ahead. He just closes his door and goes to bed. Who can blame him, I would and have done the very same. As a matter of fact, I think I will do just that. It's been a productive weekend and I am grateful for the fun we had among our many accomplishments. I am learning that life has to be a balance and I'm doing my best to find it!

Easy, Breezy, Beautiful Day

These are the days we look forward to. The days when Zack is a "normal" kid wanting to hang out with his friends, go "off roading ", drive around, look at his car, check out what's going on in the car world. Pretty much anything that gets him out of the house but not in large crowds (for protection from infection). Last night he wanted to stay with Drake, he comes to me and Frank, gives us a hug goodby, grabs a bag with his shot and alcohol swabs and heads out the door.

He has taken full charge of his own care. He plans on going Monday for blood work, he tells us, he doesn't need us to go with him for this. These tests will determine whether or not he starts another treatment on Tuesday. The staff at the Clinic are amazing. I know when he goes on his own they are treating him just as if we are there. They are protective and nurturing and we are blessed to have found the right place.

Mom spent the night last night, this morning she wakes up all smiles. She tells me that she feels so much better after seeing how he is at the clinic and around the house. She noticed while we were at the clinic that his lips were white and then all of a sudden at lunch the color comes back. He showed her how he gives himself the shots. NOW she is not as worried about Zack, she is worried about me.

As a caregiver to my father, an Alzheimer's patient for 13 years, she sees things in my behavior that remind her of herself. Being a person with Obsessive Compulsive tendencies ( okay let's call a spade a spade...  OCD are my middle initials) she worries that I will try and continue to have "everything" in order. She tells me I will need to let the kitchen floor get dirty every now and that the dishes will pile up but it's okay to leave them. I ask if she has seen my floors lately. I find that I'm so tired these days that I have time to "maybe" eat dinner, crawl in bed and blog. I keep the blog going for those connected to us, those that are seeking some understanding, and hopefully reach and help out someone who may be going through something similar. My intention is to spread the word about Sarcoma. You will see a ton of information about Breast Cancer, but Sarcoma is rarely spoken about. I had never heard about it before it touched our home. If I can help one person better understand, learn and spread the word I have accomplished my mission. I promised Mom that I am and will continue to take care of myself. I understand that this is the beginning of a long haul for us all, and I know that in caring for myself, I will be around for those that need me.

Mom, Rhonda  (sister) and I spent the entire day cleaning out one of her booths in the local mini mall . Because my attitude today was better, everything went so smooth. We were able to accomplish the entire move in five hours and now Mom's jewelry booth looks beautiful with Antiques dispersed between all of her creative jewelry designs. To spend a normal day helping Mom, eating lunch with her and Rhonda outside on the patio of a wonderful local restaurant and taking the time to browse our quaint shops on Main Street, I had a few hours to forget. Frank was able to go fishing for a few hours this morning and is planning on going with one of his friends again tomorrow. His own little "sanctuary" and how he copes with life's stresses.

We savor the good moments, those,  are what we are able to look back on when times get rough.

Attitude is Everything!

I know that Attitude is everything! I know that if my attitude today was good, things would have been a lot smoother. No matter what I tried to accomplish today, it was a struggle and at the end of the day I realized that is would have gone so much smoother had my attitude been better. Sure people make mistakes, people don't always do the right thing, some people just don't care, but had my attitude been better, I would have been able to shrug it all off and enjoy the day. Instead I was miserable and made those around me miserable as well.

What should have been an amazing day with my Mother and my son, turned out to be one more thing to mark of my "to do list". I tell Zack on a daily basis that his attitude must stay strong, he must stay positive and yet when the going gets rough, I don't follow my own advise. I could blame it on lack of sleep, stress or sheer frustration, but if my attitude had been calmer, I would have made a joke about each situation and we all would have had a good laugh.

I can't take back today, but I can change my attitude in the future. As I get ready for bed I count today's blessings.

1)  Mom was with us all day and through tomorrow

2)  Zacks counts are good , his arm is getting better with the daily shots and he has been in good moods in
      spite of us saying NO to many of his requests to run all over town.

3)  DSS finally got everything they need to complete our application for insurance assistance for the July and
     August. (after multiple trips to their office)

4) We were able to go the the mall to get Zack a pair of glasses. (after waiting 1 1/2 hrs they will be ready in
     5 days)

5) We made it to Hendersonville, Asheville and Home in spite of my "road rage" (Zack to me "MOM WE
     ARE ALL GOING TO DIE!!!")

6)  We get to go for next treatment on Tuesday (instead of Wednesday.. a nurse is willing to work half a day
      on her day off to accommodate my work schedule) THE CLINIC ROCKS!!!! Thank you Dr. S, Julia,
      Melanie, Karen and the nurse willing to come in on Tuesday (sorry don't know your name) for all your
      re-scheduling efforts!!

7)  Friends are working on a fundraiser to help offset the medical bills.(Life has a way of making us put away
      our pride and accept help when offered)

With so many blessings, I now end the day with a smile on my face, because I get a chance to make tomorrow better.

But Mom.......

Zack had decided last night to bring me into work, then go to school, meet with his teachers and see some of his friends during lunch. Last night it seemed like a good idea. His numbers are good, why shouldn't he. We can't keep him locked up tight for safety. This morning I wake up with major anxiety. I realize there is that feeling again in the pit of my stomach. (no not hunger pains), I go in to Zack's room and tell him that it is better for him not to "drop by" the school, no matter how good his numbers are we need to first check with the school nurse to make sure there is not something going around. He is not happy (to say the least), but I have to stick to my guns on this one. The minute I made my decision the "gut feeling" was gone.

At lunch I go to Department of Social Services to file for retro- active Medicaid (they "may" pay the past two out of three months of medical bills, after a 15,000 deductible) anything is worth a shot at this point. The woman there is pretty blunt and shows no compassion at all. ( I'm blunt so I can deal with that, but lack of compassion? not so much) I am sure she has been there many years and is pretty tired of all the "sob stories" she has heard.  I share "our story" and her only response was "things happen in life and you just have to deal with it". NO, REALLY???   I  understand when you work in this field you become tough and immune to others problems. Maybe she is going through her own tough time, or maybe she just doesn't care (over think much?). I sit there and am embarrassed that I am asking for help. She tells me our income is too high for a certain program, but because this was a "catastrophic event"  we can get "some" help from another program after the high deductible. I ask how this "system" works and she says "it's very simple Medicaid will pay what they want and then you work out deals with what's left". ( Ah I just love the condescending attitude?). At this point I can't wait to get out of there. She makes me sign a piece of paper stating I will not ask for more Medicaid after August 31st. I sign it and my 10 minutes (which felt like an hour) are done.(UPDATE: yesterday I asked if she needed copies of anything,  her response NO, this morning I get a call and she needs copies of the bills. OK... so your attitude causes ME more of my time? not a happy person this morning.

I go to the High School to pick up Zack's Psychology book and get things straightened out for his classes. I tell the secretary that Zack is upset because I wouldn't let him come to school, she tells me that was best as several students have been out with a stomach virus that is going around. Next week the Health Dept is going to be there to give the live flu virus to the students, so we better stay away then too. No worries!!

I have an hour left for lunch and decide to eat at a local Italian restaurant where my comfort food is Mussels and French Fries. I sit outside, talk to Nancy for awhile on the phone and then plug my headphones into my Kindle and pretend no one else is around as I continue to watch "Grey's".

When I return to work,  Zack calls asking if he can go to Art Guild. Again, I have to tell him no. He is really upset this time and cuts our conversation short by saying "OKAY MOM!!!" bye.. and hangs up. It is so hard to say no to him, but we have to do everything in our power to protect him and if it means he will be mad at us a little, it is all worth it. I ask Doc Steve if he would order Juice Plus for Zack, (which is 100% of the daily allowance of fruits and vegetables and vineyard blend which is good for the heart.) Since Zack's eating if off, I KNOW that this is the best course for him to get a lot of the nutrition he needs and since it is 100% real fruits and vegetables the benefits are wonderful. (What can I say, I used to sell the stuff, but then got too lazy to continue selling it). Anyway... Doc found out that Zack is eligible for the children's research program for four years as long as one of us is taking them as well. We were going to pay for him to be on them, now we can take them as well. Good things are coming from all around.

I heard some news about a dear friends child and call to see if there is anything I can do. The anxiety returns, as she is explaining the test, procedures and now the waiting to hear results from a biopsy. I want to take the Doctors and make them give her good news, NOW. I want to have some control so that my friend doesn't have to go through anything even remotely similar to us. She has already dealt with a lot in her life and her family is so precious, I want only good news. She admits that she spent last night reading my blog to see if there are any similarities, is there anything they missed, She wants to know how I am so strong. On the outside I am strong, on the inside I am crying. I tell her to stand at their door of the Doctors office until they give the results. Knowing her she will do just that. When you mess with us Mama Bears better watch out!

I finish out the day, pick up a pizza for the guys and head home. My intent was to crawl in bed and relax, but Frank mentioned that he had billing to go out for the company, Zack wants to show me posters he has found for his room, the dog wants to be petted, should I go on? Zack again gives himself his blood thinner shot  and we tease about following the dots from his previous shots of the week. I start to get tired and "grumpy", Zack asks what "my problem is". I tell him I just need a few minutes alone, no talking, no emails, no texts, just me sitting on my butt watching a TV show that requires no semblance of brain activity.  He responds with "alrighty then". We both laugh and he tells me he is heading to bed.  Before he goes I tell him to make sure he has his phone and MP3 player charged and that I told Mom to charge her Kindle ( she is going with us tomorrow to meet the team of nurses and doctors). He says "porque?" (why in Spanish) I tell him tomorrow we go for blood work, but the last time we had a ten minute appointment we stayed all day.. He looks at me and "says I'll pay you back for that comment". We find we have to tease and joke about this stuff or we would cry all the time.

It is late and tomorrow we hopefully will have fun day with Mom. Looking forward to our day!