Thursday, August 30, 2012

"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.!

Wednesday, August 29, 2012

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!

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

Tuesday, August 28, 2012

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.

Monday, August 27, 2012

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!

Sunday, August 26, 2012

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!

Saturday, August 25, 2012

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.

Friday, August 24, 2012

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

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.

Thursday, August 23, 2012

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!

Wednesday, August 22, 2012

It's a beautiful day in the neighborhood!

If there is one thing we have learned with this treatment is that each day is a new "normal". Each day Zack's emotions and physical stature change. As fast as he is sick, he is again well. We too are up and down with his moods, either being his cheerleaders, caregivers or sounding boards. Whatever his needs, we are up to the task.

Frank and I start the day with our usual hustle and bustle. I head out to work at 6:30 am with the idea that Zack will call me if he needs me to return home (a ten minute drive at most) at 9 am to give him another shot. He told us last night that he could handle it himself, but since he is so new to this (like I've been doing it for years?) I wanted to make sure he knew he had backup. Frank heads out next, he too is a big anxious about the shot, but also understands Zack's need to be independent.

It is 8:30 am, I call Zack to make sure he is awake enough to give himself the shot. I had woken him up, He assures me he can take care of it himself, I tell him to call me as soon as he is done. I am concentrating on my work, but in the back of my head I'm waiting for the phone to ring. Millions (maybe billions) of people give themselves shots daily for diabetes, blood clots, etc... But this is my 16 year old son, who up to now has been healthy and taken nothing more than a Tylenol for a headache. Two minutes after 9, the phone rings, it's Zack telling me he did it! He is not thrilled at the idea of sticking a needle in his belly, but you can tell he was proud. I asked how it went and he says "it stung for a second and hurts when putting the medicine in and for about five minutes after." Once we hang up the phone, it hits me. I sneak into the exam room, grab a box of kleenex and have a good cry, Within minutes I stop the crying, wipe my face and head back out to greet our patients.

It is lunch time and Zack calls asking if he can borrow my car (I knew I should have put on the carlashes... eye lashes for the car), he will bring me Franks Dodge truck since it is easier for him to drive an automatic instead of stick. He wants to get lunch and then go to Floyd's to bring him the keys to his Galaxie. I had called Floyd and asked if he (since Zack has to really watch out for cuts due to being on the blood thinner) could look at his car and determine what needs to be fixed to get it on the road. I tell him this is not a favor, I don't want any BS, I am serious  We will pay and don't want him to argue with me about that. Business is business! He laughs and says OKAY! He offers to look at it and if need be can find someone to make the necessary repairs. It's a deal!! He then tells me that what he is about to share must NOT be blabbed!!! I say "oh I'm good at blabbing", he said "then I'm NOT telling you!" I tease and say "OH you DON'T want me to blab!" "EXACTLY" he says... so... "We decided to take the front seat out of Zack's car, take the upholstery and bring it to Hendersonville to have it covered." He continues, "we got the seat back, put it in the car and when Zack comes today I'm going to tell him someone broke into his car" "It's an early Birthday present for him". I promise not to say a word. Zack heads over there and (in Zack's words) he looked inside the car to see what was "taken", saw the new seat cover and just kept saying "WOW, WOW, WOW, OH WOW".... He was so excited he was floating. He still is! He returns home and meets with our neighbor whom has promised to help with his Senior project. They were going to re build a motor, but instead he is asked if it's okay for them to paint his car! Zack is so excited he can't stand it! That is still heading to his future in automotive, but if he could get his car painted at the same time, we would buy paint and supplies and he could learn how to do the work.

He picks me up at work, asks if I got the text with the picture and proceeds to tell me about his day. He says his arm is feeling better, we allow him to go to a friends house for a couple of hours with the understanding that he is home by 8:30 for his next shot. At 8:15 he walks in the door. Frank asks if he could give him the shot, he teases and says he would have fun sticking a needle in Zack. Zack looks at him and says "NO!!" but I'll show you how I do it myself. So at 9 pm ( doses are every 12 hours) he lays on our bed, cleans the skin with alcohol and sticks the needle in his belly. He checks to make sure it is not in the muscle and slowly puts in the medicine. To think two days ago, we never even knew about this stuff!

Frank is impressed, tells Zack how proud he is of how he is handling everything and goes to sit on couch to fall asleep to his favorite show (hey it's a long day for him too!). Zack and I decide to tackle more of his room and as I start to put out his childhood nicknacks , he is setting up his stereo record player that was Grandpa's. He is so proud of receiving that as a gift along with many records.  I hang out with him until about 10 and then melt into bed to write my blog. He comes in and is reading over my shoulder. "Hey Mom, you got all this pretty much accurate, good job!" Hey if He's Happy with it, so am I!

All in all a great day filled with many blessings!

Just a simple shot today.... Yeah Right!!!

Zack had woken up this morning with extreme pain in his left arm. We decide to tell the Doctor as soon as we arrive at the clinic, one hour away. We are simply scheduled to go the the clinic for his Neulasta shot. We walk in, immediately Zack throws up. His color is gone so they decide to get some fluids in him. Angie (such a sweetie) connects to his port and stars IV fluids. THAT should have been my first clue!  We tell Angie about the arm, she checks it and sees that the color and shape is different from the right arm. Dr. S. comes in and checks in the location where the pain is coming from. He then checks the other arm. He does notice a difference and feels a harder area on his left arm. He has decided to order an ultra sound to make sure there is not a blockage (blood clot). They give Zack more fluids and Kytril (sp) for the nausea. Karen comes in and talks with us a bit to see how we are doing. She is an amazing Social worker and is in tune with our every need. I'm not sure how she makes us feel like we are the only people she is caring for, she just has a way about her. Zack calls it "Karen being Karen", which is the highest of compliments. Out ultra sound is scheduled for 1 pm. It is now 11:30 am, so I call Frank to let him know what is going on, then call Mom and Rhonda. Rhonda immediately offers to bring us lunch which we accept (we were not prepared for an entire day). Once lunch arrives we gulp it down, hug everyone and say goodbye with the understanding that we are to wait for the results of the US as we will then be advised on our next step.

We arrive at Reuter Ultra Sound and Imaging. We are told to follow the purple ribbon to the back room (this is primarily pediatrics), we are then shown through another entrance, the walls are bright yellow, purple, green. The chairs are soft materials in red and yellow (not the best color for a children's unit as they were filthy, yes I noticed) We sit in a tiny waiting area where a large flat screen tv is showing "Lady and the Tramp", Zack looks at me and we both begin to laugh. I see one of our patients there with her tiny baby, her doctor ordered an ultra sound of the babies hips because he was breach. I remind her that we work on babies at the office, and she says "oh, I remember" As we go inside, I tell them to give me a call if they ever want our service. Zack teases me and says "Mom are you EVER OFF WORK??", "NOPE, if I know they need help, it's up to me to educated them" is my only response.

Zack has decided that he wants to go in alone. The rooms are so small there is barely room for him and the technician let alone me too. About a half hour later she comes out to get me, the doctor wants to explain what is going on. Again my heart sinks. I look at the images on the screen, take a picture of them, but it means nothing to me. Zack tells me that he was joking about "finding a baby on the image" and she firmly says, "we do MUCH more than that you know." He just figured she probably has heard that a bunch of times and has no sense of humor about it. The doctor comes in and says "he does have a blood clot", this can happen near the port and can be treated with blood thinner. She says it is not life threatening but could be if nothing is done.  Again with the life threatening shit!! We are told to return to the clinic and they will further instruct us. So.......

We are back at the clinic. Doctor S comes in and shows us a drawing of what is actually going on. He says that this could be part hereditary and asked if anyone in our families has problems with clotting. Zack laughs and says "yea pretty much anyone on my Dad's side has crappy veins", they tease and say "oh you can blame it on your father". I'm not ready to joke yet, as a matter of fact I am choking down the tears. I don't want him to see me scared or upset. He looks at me, Karen is sitting on the bed with him and says "let your Mom handle it her way and you handle it your way". I simply tell him that I wish this was easier for him and don't want him going through a bunch of more shit. (yes my son hears me swear quite a bit). He looks at me and says "Mom, you're allowed to loose it, this is all bullshit and I'm tired of it too". Karen has found a place ABCCM (Asheville Buncombe County Christian Ministries) that has a clinic and pharmacy. They can get us the shots he needs. He will have these at 9 am and 9 pm until further notice. Since our insurance doesn't kick in until September (and this is not always covered by insurance) and this is very expensive stuff (remember the Kytril, 7 pills $200.00) they have offered enough for the rest of the month.

Angela comes in with the "dummy" doll and is ready to show us how to give the shots. Zack STILL hates needles, and he is willing to learn to give himself the shot. I tell him I can do it, I'm not squeamish anymore, I tell him "this is my new Navitat", he says "you're not jumping off some tree with a needle to give me a shot!!" we laugh. He knows that when I was tired of my fear of heights, I went Zip Lining with my sister in laws and now have no more fear of heights. I conquer my fears and this is just another hurdle.Dr. S comes in and offers to give Zack his first shot in the morning, but I tell him as much as we love the staff, we don't want to see them, we don't want to see them again until Friday. We are told to wait an hour and then head over there, we decide to get out and head to Habitat store. Zack has some things that he wants to sell, and since his numbers are good we head over there. We decide to head over the ABCCM and collect the shots. Since this is a clinic I tell Zack to stay in the car. Even if his count is up, we don't need to subject him to sickness. I enter the building and can tell how many people they help. The place is a quarter of the way filled but the chairs are all touching each other, even in hallways, there is barely room to walk. I let them know I'm there, fill out a couple of pieces of paper and then am asked to wait in the lobby. A woman approaches me and asks if I have the flu or a cold, I say, no I am just here for medicine for my son, she says Oh ok, then I will sit next to you, I don't need anything making me sick. Zack texts me a couple of times,  he wants to go home, he is hurting, thirsty and getting tired. I tell him "doing the best I can", this is not a regular pharmacy, there are about a dozen people waiting for their medicine and one pharmacist. I remind Zack how lucky we are that they are willing to help us, and if it means waiting an hour (which it ended up being) then we do what we have to. I do see the difference. When you have the money or insurance, you are not treated any better, these people were amazing, you do not have as many people in line though. This group is really helping a lot of people and when we are out of this situation, I will not forget them. I get the medicine and we head home.

The minute we are home, Zack asks to go and see Drake who lives just up the road. Wanting him to have some normal part of today, we tell him he can go for a little while. All of a sudden out of the blue, Frank and I are talking about Zack, then politics ( a BIG NO NO in our relationship) and I'm yelling at him about EVERYTHING!!!! I guess I was so fed up with the entire day, tired and angry he was the perfect target. As bad as I felt after, it felt so good to get out the anger. Was it fair? absolutely NOT! Was it needed? Yup. I tell him if this continues this way, he is going to have to pick up the slack at home. He is going to have to figure out when the laundry needs to be done, trash, etc... We no longer have the luxury to come home from work and sit and relax, not every day anyway. He said "just give me a list and I'll do it", My response? "NO, YOU figure out what needs to be done, I have enough in my head". So, we go our separate ways for about thirty minutes.  I get calm, go on the porch and tell him "THAT woman, went back to the mother ship, she won't be back for awhile", his response "are you sure? she was kind of scary" we both laugh and he tells me he is here for us, he just doesn't see what I do when it comes to what needs to be done. I do agree as it is a male / female thing. But tell him to work on it, he immediately goes in fixes up dinner I picked up at the BBQ place, puts a couple of loads in the laundry and THEN falls asleep on the couch.

I spend the rest of the evening putting up shelves in Zack's room, hang up his artwork and fix his door which didn't want to close. Zack shows me his car shows. I have to laugh, I am the only one pushing to get things done and as Frank and Zack say "you need to figure out if you REALLY need this or that done NOW". or can it wait. I know the answer, but being a stubborn Taurus, I'm not ready to give in.

Tuesday, August 21, 2012

Monday, Monday

Beautiful gift from a patient!
What a wonderful way to start the week. Last night we received a call from our Belgian family, Willi and Nicole. They had called the other day when we were still in the hospital and talked with Frank for a little while. Willi and Nicole have been a part of our family ever since I can remember. Willi's Aunt and Uncle were my Meme's (grandmother) best friends. We did everything with them when we would go to Belgium for our family visit. Once they passed we were blessed to continue a beautiful relationship with our extended family. Their daughter Linda and I are Facebook friends and I enjoy watching as she has grown up and now has children of her own.Willi tells me to Skype them so they can see Zack. So that is next on my list. A great idea actually!!

Today was the first "normal" day that we have had in quite awhile. Frank and I both worked. I woke up with a touch of vertigo, so as soon as Doc Steve was in I asked if he could get rid of it. He replied "I will do the best I can", one great adjustment later and the vertigo was gone! It's so cool what Chiropractic can do in the past I would have just dealt with it. My personal joke is "I don't leave home without my Chiropractor). At lunch I was also able to see my counselor, Jim Nourse PHD, (who combines clinical psychology and acupuncture) . Jim did an amazing job at clearing my head of the cobwebs (with two needles in my forehead) totally cool! We had a very productive session. as well. I kept saying " I'm just tired, once I catch up on my rest, I'll be okay", he very calmly says "You are more than tired, you are dealing with your only child having chemo, having had cancer and the emotions that go with all of that, not to mention the daily life change and running around you all will be doing for the next year or more." "Oh yea, I didn't really think about it that way,  We're just doing what has to be done and taking it day by day." I started to laugh, darn, I thought a little sleep would do the trick.

I checked in with Zack periodically, who is staying at home today. We go for the Neulasta shot tomorrow and though his counts were good when we left the hospital, we didn't want to take a chance and have him running around. Whenever I would call him  he would simply say "I don't feel well" I try and get him to elaborate, but he doesn't. He is sitting playing his x-box, taking a nap and checking his chromebook to see if he has instructions from his teachers. I will need to call tomorrow to get them to give him work. I understand they want him to take it easy, but we need him to stay on target with the other kids so that he graduates with his friends. If he can play video games he can do school work. Yes, We are are tough, but just like he still has to do his chores, he has to do school work.

I stop at a convenience store to buy him some ginger ale at the end of my  lunch break and text Drake to see if he minds picking it up at the office and bring them to him on the way home from school. He is a sweetie and stops by to collect them and brings them to Zack.  Drake hangs out with Zack for awhile and they play the X-box. He is blessed with good friends. Chris came to hang out with him last night as soon as we were home.

By the time I get home from work around 7 pm, Frank has been home for about a half hour. The two of them are cutting up and just hanging out talking about their day. I arrive home and feel so good about the work I was able to accomplish. Frank drops the bombshell that one of his best guys is moving on to another job, working on a pipeline somewhere near New Orleans. He is sad and then realizes that this means he will not be able to participate in taking Zack to many of his treatments. I assure him that we can work it all out, not to worry, just find another guy and everything will be fine. Whatever is thrown our way, we can and will handle.

Zack and I go into his room and start to pout some things back in place. After getting his shelves put back up and the furniture moved in, Zack takes my arm and says "Okay, we can rest now Mom, we can finish this tomorrow."  He doesn't realize that "rest" is not in my schedule, but then again he doesn't need to know everything! While on my way back to work I called the Social worker who is helping us get coverage for the first three months of medical bills. We will have Inclusive Healthcare beginning September 1, but before then is proving a challenge to get financial help. She informs me that we may no be able to have coverage for the first month, but maybe will have help in July. No mention of August. I breath in deeply and tell her that nothing is going to be submitted until she and I confirm each statement, now totaling $32,000.00 and that's just through July 30th. After dinner I spread all the bills out on the bed and sort through them, one by one, organize them by date, then make a list of whom we owe, the amount, what it was for and the statement number. Thank goodness I'm good at organizing and it didn't take me long to put it all together to bring to the case worker tomorrow. Time is very precious right now, no one waits for anything and I have to stay on top of everything.

It is now midnight and I have finished with my day. I can go to bed knowing that my son is going to continue having a good week, my husband will find another great employee and I can handle whatever comes my way. I get to hang out with Mom on Friday and Saturday when we take down one of her booths here in Brevard. She will spend the night so I will get to have quality and quantity time with her. Something we both need!! Sleep tight everyone!!

Sunday, August 19, 2012

Home sweet Home

Last night was the night from Hell. Besides the regular checks (which we totally understand) by the nurses, the room phone rings at midnight. I get off of the double mattress "makeshift bed", go to answer it and no one is there. I go back to bed, fall back asleep and there it goes again. I get up answer it again. no one is there. I call the Hospital operator and ask if she transferred someone to our room, she explains they are not allowed to do that after 11 pm, so I decide to unplug the phone. I just fall asleep and am awakened again at 2 am by an alarm, at first I think it's Zack's IV monitor, but realize it is much louder and out in the hall. It was  the fire alarm  followed by a woman's voice screaming "Code Red Radiology, 2nd floor room A....." she repeats that over and over and over again, while the alarm continues to sound. Thankfully, Zack is sleeping through it. I open the door and there is no sign of anyone, anywhere. Of course being so tired I'm thinking they all left us here to die. (dramatic much?). I call the nurses station and ask what is going on, she says "oh, you can hear that in your room?, I'm sorry, it's just the alarm on the second floor" and she hangs up. I know I'm still sleepy but aren't we on the third floor, doesn't smoke and fire go up? The alarm continues to sound and the voice follows. I call for our nurse Liz who comes in quickly. She apologizes and said she too didn't realize we could hear it. She said something just happened down on 2 and the fire department is handling it. "Do we need to do something?" Oh no, they would have come up by now, plus we have fire walls for added protection. I tell her "as long as I know the procedure in place, I'm good." She leaves and I finally feel like I can go back to sleep.

We wake up around 9 am. At least I was able to get a couple of hours of steady sleep. Zack wakes up ready to go. He wants out of this place. I shower and start to collect all our belongings. He eats his breakfast while I take a load down to the car. He is not feeling that well, but at this point it is mostly because he wants to be home in his own room, hanging out with his friends. We watch a couple of goofy "chick" flicks and Sam (the day nurse) checks up on him periodically. Sam is from Canada originally and we discuss the difference in Health Care. She said there are plus' and minus' in every kind of care. She too, as personal experience with family members and cancer, but seems less attached than the others. More "taking care of business", which is also a great way to handle this disease. We all learn to handle it in our own way. She teases Zack asking him if he's okay because he is watching these kind of movies. He just laughs and says he is too lazy to change the channel and if it makes Mom happy....

Lunch arrives and Zack inhales it. At first he didn't want to eat but decided it was better for him to get something in his stomach. The food hasn't been that great for him, but he has managed to eat most of what they bring him. He can tell he is weak from not walking around and getting outside, which he hopes to remedy once we are home and he builds up his strength. Sam comes in and tells us the doctor is there and will be down in a moment to discharge him.

Within 30 minutes Dr. Bottom walks in wearing a blue butterfly shirt. I look at it and tell her and Zack that Dad is with us. I tell her a very brief story about the blue butterfly and she looks at us and says "you're father is definitely here with us and you can now go home" We grab our stuff and head out the door saying goodbye as we are walking. We do not want to be stopped by anyone. As we leave, we say "see you in a month" and the door closes behind us.

Zack steps outside and stops. He takes a deep breath and says "THAT'S what the outside smells like." It's nice to see him smile again. We drive home stopping to grab me lunch I can eat on the road. We arrive home and immediately Zack runs to his room. It looks great. The painting, new floor that Frank installed while we were gone looks amazing. I make up Zack's bed, fluff it up a bit as he installs his computer.There is a wonderful surprise waiting for us, Frank shows me a lasagna, salad, bread and dessert, all homemade by Nancy (my BFF) (I usually would buy someone a Stoeffers frozen, trust me no one wants my lasagna... LOL). Frank has gone to get the new prescription filled (one hour TYVM) and I am now ready to go lay in my own bed and watch my mindless shows.

We have tomorrow "off" from running around. Frank and I will be working while Zack is home resting and putting his room back the way he wants it. Tuesday we go back for the Neulasta shot and we head back home. This week will be a good week without treatments. We will enjoy this time for sure!!

Saturday, August 18, 2012

Photo Gallery...

Entrance to the Pediatric Unit
View from Pediatric Floor
Zack's room is to the left
Zack staring from his room

The "fun" mirrors for the "kids" in the hallway

Almost time to head home...

It is 8:30 am on Saturday, Aug. 18th, Zack and I both start to wake. The Ativan (Lorazepam) given last night really knocked Zack out so he was able to sleep well most of the night. He woke about three times to use the rest room and didn't even remember. The breakfast tray is again waiting for him, this morning it is scrambled eggs and bacon with a  biscuit already soggy from sitting. Zack is "loopy", our new terminology for him after a dose of this medicine. The Ativan and Decadron (sp) helps keep the nauseousness down but also makes him sleep a lot and kind of leaves him "stoned", not an appropriate term for a teenager, but lets call a spade a spade. He wakes up slowly, I try to get him to eat something so I offer to heat up his food in the microwave and he is receptive. I walk down the hall to the "parents closet". If not previously mentioned, there is a small room for parents containing a small refrigerator, microwave and coffee / espresso maker. If we need to store food, we mark it with our last name and room number. They say that a lot of people bring small refrigerators to the rooms, but we figured out that we really didn't need that.

When I return with the heated meal, Zack sits up and proceeds to devour it. His appetite has been off quite a bit which is to be expected, so it's nice to see him eat a bit. He all of a sudden is eager to get some donuts. I call "Tante", Aunt in Flemish (Rhonda) who has been eager to help and ask if she is up for a donut run. Rhonda says she knows where a Dunkin Donuts is and of course Zack says "NO!!! we need CC. Spoiled much? We ask Melissa (our day nurse) if she knows where a Crispie Creme is and she gives directions. We tell Rhonda to pick up chocolate covered custard filled and kruellers (which are Zacks favorites). She calls from the store and they tell her they haven't make krueller's in two years? (weird.. he get them at the store), so she gets something the young lady says are very similar. Rhonda as always is eager to please.  Zack and I decide to go walk around the Hospital for a little exercise. He is weak from being in the bed so much, so we get permission from his doctor to go downstairs to the vending area and pick up a couple of coffee's. Any excuse to get him out and walking around a bit. By the time we return to the room,  Rhonda walks in , opens the big box and there right in front of us are the chocolate covered sugar filled ( thick rich white blob). "Oh man" we all say pretty much in unison, "I'll be right back", and out the door she goes again, returning within the hour with a bakers dozen of the right donuts. By this time, Zack is feeling sick again and can only look at them. We know they won't go to waste and he will be able to have one later when he feels better.

Rhonda stays for a couple of hours, just hanging out with us. Zack gets up to use the restroom (don't forget he is being pumped with IV fluids all day and night to flush out his system and keep him hydrated). While he is up I decide to change his sheets, pillow cases and blankets. He mentions the "bad" smells often. His sense of smell is increased and the only smell he likes right now is one of the air fresheners I bought for in the room. He was given a gift from "Linus" a group that makes colorful blankets to hand to Cancer patients. His is full of so many bright colors, is ultra soft with fringes all around it.

 After the bed is made, I encourage him to wash up. He isn't allowed to take a shower due to the IV being hooked up all the time, so I bought fresh wipes and non water shampoo. I proceed to spray his hair with the shampoo and he breathes in the fumes. NOT my best moment in being "motherly". He washes his hair and already says he feels better, though he can't wait to get home and take a shower. Rhonda decides to head out, work on her apartment a bit and get ready for a concert she is attending tonight. Tomorrow she spends the day with Mom, taking her grocery shopping and having some mother - daughter time together. Jealous? you bet!!! But my place is with Zack, Mom and I have had many days together and next Friday is our time again.

Today I can stay in the room all day, no more need for running errands, just sit and hang out with my buddy. Melissa checks in on us frequently. She heard about the rough evening Zack had and is trying to figure out what is causing him to shake and feel like his insides are "hot" after treatment. I always like it when I talk with someone and they look me in the eyes and take the time to listen. That's Melissa. She makes you feel as if you are the only patient and family in her charge. Let's face it, they are not caring for only the patient, they "care" for us too. Melissa teases us about our banter back and forth. She has realized after this short time, that Zack's mother is a lunatic.

Zack and I are watching comedies, movies and anything else that can help pass the time. I fall asleep for about an hour or so in the rocking chair and wake up a bit more refreshed. Zack hasn't slept during the day today, so maybe he will sleep better tonight. I was hoping a couple of his friends could make it to see him today, but they too have their lives to live and it's hard to see your friend in this shape.

Cocktail for Chemo Treatment
It is 4 pm and time for the final treatment of the week. Melissa mentions the Chinese food the front desk nurses ordered, Zack and I look at each other and ask if they deliver to the Hospital. She says "oh yes" Chinese, Pizza . She runs down the hall and returns a few minutes later with a printed out menu. Zack says he is tired of Hospital food so we order a Pu Pu plate for him and chicken for me. Of course I have to tease him that now he is eating pu pu... he is not amused, but does actually manage a smile and tells me I'm lame.

I walk down the hall to call and check in with Mom. I pass Chris (Vin Diesel look alike), he stops me and with a smile says "I hear you think I look like Vin Diesel", I laugh and say "someone's been talking and tell him yes" he says "Thanks, I take that as a compliment, he seems like a nice guy" I tell him that I wanted Zack to tell Make a Wish that he wanted to meet Vin, but he wouldn't go for it. He then tells me of a young girl in Atlanta that had a "date" with Vin as her wish, he picked her up in a limo to take her to a nice restaurant and she wanted grits, so they drove around until they found a waffle house that served grits. How cool is that!

I return to the room and tell Melissa what Chris said, she laughs and says "oh yea, we are reading your blog, I like the way your write, it's pretty cool to see this through someone else's eyes." I am of course flattered. Zack is doing well with today's treatment, though he still has the shakes. He is given a smaller dose of Ativan but still acts "loopy". Melissa decides that is probably not the best medicine for him. She tells us that some patients can hallucinate from this medicine, Zack (with his sense of humor) looks at the ceiling as if he sees flying butterflies or something.  Melissa and I crack up! It is so good to see him when he is funny. His mood has been so heavy this week, it will be nice to get him back home.

There is a knock on the door. I open it and there stands a man with our dinner. I tell him to come in and join the party. He looks at Zack and says "Hey man, Rock it"!  I "of course" tell him Zack is undergoing chemo and he shares his story of several family members going through that as well. He looks at Zack, wishes him the best and leaves. Melissa finishes up Zack's treatment and makes sure he is good to go for the night. She is ready to head home and wishes us the best for the coming weeks. I don't know how they can keep their energy up for the shifts they work, but she was just as sweet and attentive as she was firs thing this morning. We are blessed with the care. We KNOW we will see her again as this is only the first in a series of weeks in the hospital through the coming year.

It is 8 pm, Zack and I are watching a funny movie. He asks me to sit in the chair next to him. He is again my little boy and wants his Mom close to him. He doesn't like the way this medicine makes him feel and is worried. I go online and look up the side effects and read them to him. He all of a sudden realizes this is "normal" and relaxes a bit more. Liz, our night shift nurse walks in and introduces herself.  She is aware of the issues he has been having and says that she, Melissa and the Doctor agree to give him the smallest dose, since he has hardly ever had any medicine in his life, it doesn't take as much. Zack and I hear "Nurse Janice" over the intercom, she has a reputation for following the rules to the letter and has announced that it is time for all visitors to leave. Zack and I laugh and say "there's nurse Janice"  Liz says "oh no that's Tamara", I say "NO WAY!!" Tamara doesn't seem to be the "type" we laugh and I mention I'm going to have to tease Tamara when I next see her.  It has been five days and we already feel like we are have an additional family. I don't see how anyone can go through this and not form some kind of connections with the caregivers that surround them.

Hopefully tomorrow we are out of here by 2 pm. Melissa told us the Doctor already filled out a lot of  the paperwork, has a prescription ready and once he receives the right amount of liquids and they check his white blood cell count, we will be free to leave. Zack is excited, he will be home, close to his friends, in his newly remodeled room and be free of treatment for one week. (we still have to get his Neulasta shot and lab work done on Tuesday, but nothing that will make him sick). I will sleep in my own bed, see my hubby again, have my own TV shows, clean clothes and be able to "nest" in Zack's room to finish setting it all up.

Friday, August 17, 2012

Is it Saturday or Sunday?

The day started out a little later than most. It was 8:30 am and Zack was still sleeping, He was up and down most of the night, but that's to be expected with all the fluids they pump into him. His breakfast arrived early at 7:30 am and laid on his roll away bed tray waiting for him to wake. I lift the lid to see what treat he is in for today, and voila! Two pancakes and one sausage link, a small bowl of canned fruit and milk. I check the date on the carton laughing while thinking about the other morning and see it is a good date.

Shawn (sister in law) is coming for me, so we can go to to the mall for a couple of hours. Zack had already said he didn't want me "hovering" all day, in fact I heard that from four of five people the previous day. "Give him some space, let him breath" OK I get the message. I'm not used to my child being "sick". He has always been healthy and we have gone from  to 0 - 60 in 3.4 seconds with a lot of turns ahead of us. The good thing is, Zack will tell me when he wants his space and we listen.

Zack wakes up around 9 am long enough to eat his pancakes and sausage, get more Benedryl and go back to sleep. This stuff really knocks him out, so I tell the nurse, Melissa , we will be back in a couple of hours. We head out to the mall to look for a couple of things ( I buy new glasses as mine were thrown out the window from my dash a couple of months ago) I don't really even care how they look, at this point I haven't worn mascara in months, wear the same outfits so I don't even have to think and put on the same earrings, IF I even remember them. I need the glasses to handle bifocals and cheap enough that it doesn't break the bank (and they can!). We then head to Walmart (again) and I help pick out her list of items she needs for school and home. I already know my way around this store after only being here a couple of times. I pick up some waterless shampoo and wipes for Zack to us to "bathe" . He is not allowed to shower with the IV line in, so this will make it easier while in the Hospital. We go out for a quick lunch and catch up on a lot! It is again good to get out, even if just a couple of hours, yet I feel guilty that I can be out and he can't.

Shawn drops me off at the entrance to the Hospital and I run upstairs anxious to see Zack. How weird it is that you can make your "home" anywhere. I find that returning here to our temporary sanctuary is a comfort, there are people that we can call on when we need help. They are right around the corner. Zack is still sleeping, so I enter the room very quietly. He opens his eyes just a little bit and all of a sudden sits up and smiles. (something he hasn't done so easily while here) He tells me he has eaten lunch, which was horrible. I offer to bring him food, but he doesn't want this food to go to waste, so he eats it anyway. I show him the snacks and personal items I picked up for him. We just sit and he starts talking about random things. He is even a bit chipper and I am relieved. We watch a couple of shows together, I get my "comfortable" clothes on and he teases me about my "fashion statement".

Zack is sitting up a bit more, playing his game and has heard from Drake and Trenton that they will be coming to visit.  Frank calls and is on his way as well. Within two hours the room is filled with laughter and teasing. Frank came in with the license plate for Zacks car. I think he is going to sleep with it tonight. Frank also shares that he and Jeff finished putting in the floor in Zack's room. We will finally be able to move him back in on Sunday! While visiting with everyone Dr. Bottom comes in with Karen (our social worker), they are making rounds to see how all of their patients are doing. We discuss the discharge date and time. Because Zack must have fluids for up to 24 hours after chemo treatment he may be able to leave by 2 pm on Sunday. We were hoping we would head home on Saturday but whatever he needs will be done.

In order to give Zack and his friends some time to just be kids, I agree to meet Rhonda for a quick dinner. We meet at the steak house up the road. This is one of Zack's favorite places, but he still doesn't want me to bring him anything back. I decide to tease him a bit and while at the restaurant I get in touch with Zack via Skype. He says hello to Rhonda and I then I move the phone towards the server who in turns says hi to him and tells him she can't wait till he gets better to come to the restaurant. He gives an embarrassed wave to her and teases me about it when I return. I told him there was a group of servers in back of me, they saw the him and mention how cute he is.

Once I return, Zack is sitting up in a chair and playing one of his games. His color looks good, he has been having moments when he is ashy so it's nice to see color in is face. His friends had to leave and he is again bummed. We watch a couple of comedies and he all of a sudden is feeling nauseous and hot inside. I call Amy, who is back on again tonight and ask her to call the Doctor to make sure that he is okay. We hear so much about how some of the treatment can cause burns, that's why they coat the bladder with special medicine before beginning. He has never complained about being hot (under his skin). The Doctor says to make sure the room is cool,  put a washcloth on his head and keep her posted. She said sometimes this happens when they are nauseous and if he is kept cool it will pass. The Nurse, Amy turns the AC down, I get a wash cloth damp and place it on his forehead. He quickly falls asleep.

As I settle back down on the love seat, starring at my sleeping "boy", the tears start to flow. Even those are controlled, I can't let him hear me, can't let him see me. I am the parent, I am the strong one and must be strong for us both right now. I can hear Frank tell me to" pull it together". He is right, there is a time and place to loose it and this is not the time or the place. I decide to write the blog so that I can release the days events, I put on my show and drown myself in the fake hospital world of Greys.

It is midnight and things had gotten rough. Zack's stomach was upset and he has developed the "shakes", not externally but "inside" as he says. I again call Amy and she comes in to check on him. She is covered from head to toe with protective gear, she is giving chemo to another child next door. She returns a couple of minutes later to administer Adavan. She feels bad that he is having such a hard time tonight. Amy is so compassionate and really takes the time to listen to Zack and my concerns. She understands the pain of the family members, having lost her mother to breast cancer when she was young and now her father in a nursing home with dementia resulting from a stroke. She continues to share that she was also in a car accident when she was 16 and suffered a severe TBi (traumatic brain injury), she shows the scare across her forehead where they had to remove her scull cap. "All of this", she says, "all of what life has dealt me, is what has made me who I am today and Zack is such a special young man and will be more so from this life experience,"  She put the monitor on his finger to make sure his oxygen and pulse rate are normal. He is moving his finger around looking at the light at the end of it, and smiling. He is feeling no pain at this moment and falls asleep.

I fix up my "bed" and am ready for sleep. Sleep well dear world! Tomorrow is another day closer to us being home.