Thursday, February 28, 2013

Wednesday PM and Thursday Updates ....

Just as I signed off from Wednesday's blog the "excitement" for the evening started. This time it was positive! Zacks' friends Drake and Donald came to visit, though they were only able to stay a short while (school night) it gave Zack the boost he needed! Once they left another set of friends came in. This time it was Chris, Austin and a little later Trenton. These are the comedians of the group. At some point we were all laughing so hard, we had to intentionally stop so Zack could stop coughing. One of the boys commented on how "this is how we talk around the campfire, and YOUR Mom is sitting right there!" I reminded him that nothing phases me and it is just so cool to be included in their time with Zack. The quick witted Austin, who when I reprimanded him saying "don't make me change your diaper", immediately responded with "again?" I was on the phone with Nancy and we both couldn't stop laughing. 

Earlier Zack had shown me a post that one of his friends since childhood (Sam) posted on the class' senior page. It read something like "One of our fellow seniors, Zack Fisher is in the hospital, please keep him in your thoughts and prayers". Zack was beaming!! He said "Mom, he mentioned me on the Senior page on FB!"  It is the little things that mean so much to him. Just his friends acknowledging that they are thinking about him and their visits help to break up the monotony of being stuck in a room... with your parental unit at that !!!

Shortly after the "boys" left, Frank arrived with dinner in hand for the both of them. It was around 8 pm and I was more than ready to get on the road. My throat had started to hurt and I just wanted to grab dinner,  which I promptly ate in the car , make a quick run by the office to get a few things ready for in the morning (you can take the girl out of the office, but never the OCD out of the girl!) and by 9:30 I was home. I threw in a load of laundry we had worn at the hospital, and as soon as it was ready for the dryer, crawled in bed and watched a couple of my pre recorded shows. Before going to bed I texted Frank, who told me that Zack was still with the "regular" 99.8 temperature. With this information, I knew I could get a half decent night's sleep.

I awoke this morning at 6:15 am. My throat and sinuses don't feel so hot, but I know once I take a hot shower I will feel a bit better. I am back in fear mode. What if I am sick, I must stay with Zack, how do I protect him? Will I make him sicker? I then realized that I could potentially make myself worse by letting the fear guide me. I got ready, loaded all the bags of clothing, food, of course my Keurig and headed off to work saying goodbye to my faithful Sidi.

I arrive at the office by 6:45 and am happy to be back.  I immediately call Frank to find out how the night had gone. He said Zack's fever never went above 99.8. Which is high for him, but not the 102 - 103 they were "expecting". I was so relieved! Again he has proven that he is the exception to the rule! Later we find out from the Doctors visit, that if he didn't have a spike in fever, it more than likely is not fungal. We now must wait for the results to return from the lab, which should be tomorrow.

It was a great day and just what I needed. There were jokes flying around, love and positive, healing energy. So many people already knew what was gong on and offered prayers and support should we need anything. It's not something that everyone would understand, but it is something that I value highly in the face of our current journey. I finished out the day around 6:30 pm. Everything is ready in the event I can't return to work Monday (the plan is for Frank to come Sunday night, so I don't miss work, but we never know what is around the corner). Nancy and I had a great lunch of sushi and egg rolls. We were able to catch up on so much, she shared the fund raiser and how exciting it sounds!! I hope she and Sue know just how much we appreciate everything. It is A LOT of work to put one of these together and they are co chairing the event  beautifully.

On my way back to hospital, I stop at the local grocery store with a list of requested items to snack and drink from Zack. He sounds in good spirits, but also ready to feel better. He is coughing a lot still and is bored. All he has been doing is watching Horror flicks. He told me that he is getting jumpy when he hears a door close now. I told him to watch comedy as well, that laughing is healing! He reminded me that laughing makes him cough, I guess screaming like a girl doesn't!! Ha ha, NOT!!! Rhonda has called and asked if we needed anything, she is working so hard to make sure we are comfortable. I tell her I have yet another large load of groceries, clothes and of course my coffee maker. She agrees to meet me in the parking lot and when I arrive, is even holding the perfect spot for me. We trek upstairs, through the freezing cold (of course me without a coat!! dumb!!!) and unload everything in the room.

Zack starts to eat his dinner which I brought as I start to unpack. Knowing that there is just a little amount of food in the parents room, I had purchased hot chocolate packs and oat meal to put in the basket. I had boiled a dozen fresh eggs (from this morning) at the office and put them in a baggie with our name on them. There is just enough room in the tiny refrigerator for our food, but at least part of what we eat is going to be healthy. Rhonda makes another trip to my car for my Keurig and K-cups and once she returns gives me a hug and is on her way. We are so lucky that she lives right across the street.

I finish setting everything up, drink a swig of my Nyquil in hopes that it will knock whatever I have right out of the ballpark. For fun I mark up the nurses board where they had already had fun and crawl into bed. Zack is so sweet, he is thanking me for everything I have done and do for him. He makes it easy to take care of, he is not so demanding and pretty much does his own thing. We all can't wait for tomorrow's results. We did find out that his counts are very good, so his body is still able to continue fighting this off, even if partially.

Well time to get some rest. Continued blessings come our way through the multiple forms of communication!! Be well, until tomorrow!!!

Wednesday, February 27, 2013

Wednesday, February 27, Update

The night was calm for both Zack and I. With Benedryl in his system he was able to sleep most of the night, and therefor so was I. I woke up around 8 am and keeping everything dark and quiet enabled him to continue sleeping. He wasn't able to eat or drink due to the Bronchoscopy, so the longer he sleeps the better (for everyone). 

I managed to balance our personal checking account and complete Franks business bookkeeping as well. It's always great to get things caught up when stuck here, at least I feel like I am doing something with my time. I also managed to get a call in to Mellissa at the insurance company and thankfully, she says she hasn't even received the dates of service that we were billed the $9,000+ . She said for me not to worry, there would be no reason why everything would not be covered at 100%. Once I get the breakdown from the hospital, I am to call her and we will review it together.  As previously explained, Melissa is a nurse with an outside agency. She reviews the claims as they come in to make sure they are in keeping with his particular protocol (or treatment) and then forwards them back to the insurance company for processing of payments. She and I talk once or twice a month and it puts a personal face to the insurance company. We discussed Zack's current situation. She says he is one tough cookie if because he has not been in the hospital as a "sick" patient before now. She explained the procedure he was having and explained that from this they should be able to determine what type of fungal infection it is and treat it accordingly. I said I was concerned about continuing with the chemo treatment next week after his body has already been through all of this. She went on to explain that we are walking a very dangerous thin line. They must get him healthy as chemo will reduce his white blood cells again, but they must also follow the treatment protocol as closely as possible to ensure success. In my heart I trust the Pediatric Oncologists. They have not steered us wrong yet and we really have no choice but to question, get answers and trust. 

We have a "new" nurse today. Her name is Crawford and she usually works in Peds ICU. Zack is not thrilled as she likes to go by the book, he likes to make up the rules as he goes along and after so many trips here, he could pretty much write the rule book. I tell him that everyone deserves a chance and just because she is new to us, doesn't mean we can't love her as much as we do all the others. After he growls, he gives me the thumbs up. It is now 10:15 am and we are getting ready to head down the hall for the procedure. There is a knock on the door and there stands Rhonda and Peter (my nephew) with yet another ottoman! They are here to be with us and keep me company while Zack is having the procedure. I don't have the heart to tell her that I'm better not having anyone here, as I tend to ( ok I DO!!!) become a bitch (OK even MORE of a bitch) as my anxiety level increases. I tend to snap at people and have little patience with anyone around. She managed to make it through relatively unscathed. We all walk (even Zack) down the pediatric hall into another world, the world of adults and nurses who are following the steps.. Step one.. change into a gown.... oh too small... here is another one. Step two... sign all the release forms and tell me your life's health history.. Step three, lets see how many wires and tubes we can put on and into you, Step Four.. NOW you get to meet the really important Doctors that are going to tell you enough shit to make you want to run out into the street screaming "Save me, Save me!" Step Five..."we have a few questions"... "do you suffer from sleep apnea?" NO, "maybe you have sleep apnea?" NO, "Do you have bad breath?" NO, "because sleep apnea causes bad breath!" YOU DO REALIZE WHAT WE ARE HERE FOR DON'T YOU?.... "Oh yes, but I have a Masters in this and that and the other and I'm really important and need to tell you just how important I am." the rest is more of less cover my ass, cover my ass, cover my ass.......! Step Six... NOW you get to meet the pulmonologist, who scares you even more with "you shouldn't do this and should have done that, and this could happen and that could happen, but in the worst case this could happen" So you again run out into the street screaming "NO their coming to get me again!!!" 

Don't get me wrong. Each person has their own specialty and I'm glad we are being so well taken care of, but for once I wish "they" would realize how terrifying some of this is to my kid (and us). He may be large in stature, but he is still a young 17 year old. Just give the basics and get on with it. Stop trying to cover your ass all the time!!

Zack is wheeled back and within 30 minutes the Doctors are in to say everything went very well. Zack did have a twenty minute coughing spell, which was to be expected after having the tube down his throat and everything stirred up in his lungs. They were able to get good samples and sent those off to the lab.We should know something within the next day or so. We do need to watch for unusually high fever later tonight as the test "stirred up" stuff. Rhonda, Peter and I head into recovery and Zack is sitting up, still a bit groggy, but thirsty and ready to head back to his room.  R & P head out and Zack and I are now waiting for transportation to push his gurney back to his room. Since it is right around lunchtime, we wait about an hour and two very nice ladies come to get us. One is wheezing and I think for my first time, I actually witness what someone with Asthma goes through. How frightening it must be for them. The woman must sit for a couple of minutes and rests. She can hardly breath and yet, here she is working so hard, pushing people in gurney's, hospital beds and wheel chairs all around the hospital! On the way back to the room we are talking about fishing (due to Zacks fishing hat and hooks adorning it). When all is said and done, they each share how they love to fish, clean fish and then eat fish. We tell them we will announce over PA when our next fish fry is and they gladly accept the invitation. 

Dr. O.B. comes in and tells us the results should be in tomorrow morning. He says that Zack's lungs sound good and evened out a bit more, which means it is moving around and hopefully out of his system. He knows the risk of high fever tonight and has alerted the staff to be prepared with Tylonol should this occur. I share our experience with the two Doctors and he simply says, there are so many questions that are required now, he even had to go through them all when he recently had surgery. I let the Doctor know that Frank will be here tonight and tomorrow and I will be returning Thursday after work. We tease about changing of the guard! While we are talking Zack starts to eat Nachos and Dr. O.B. is amazed! He told Zack when he had his tests he couldn't eat or drink for a day or so. Once again, Zack proves that he is the exception to the rule!

Zack asks me to fix him some hot wings (which I purchased frozen at the store). He has already drunk two green teas, a water and a Fanta grape. He continually breathes in the spirometer to strengthen his lungs and hopefully clear them up a bit more. (A spirometer is used in hospitals with patients after surgery. ... Hand-held portable spirometers are most commonly used in doctor's offices ... It can be used both as a diagnostic tool and as a mode of treatment to improve the lungs' overall function. ... if you have lung problems to help improve lung function.) 

The plans for the rest of the day are to continue to rest and monitor his vitals. Frank will be here after work and I will then head to the office to make sure everything is ready for tomorrow. Once done there, I will head home and sleep in my own bed for the first time since Saturday night. Thursday will be an amazingly normal day of work and seeing my awesome patients and the Docs. (Not to mention my BFF Nancy). I will then return to the Hospital for the balance of the week / weekend. 

I will post as soon as I have information from Frank and how tonight goes. Even if just a short note, everyone will be kept up to date. Again, Thank you for everything!!! You are all an amazing blessing in our lives!!!

Tuesday, February 26, 2013

The tests just keep coming!!!

Sunday night was a rough night for Zack. He spent most of it coughing, tossing and turning. The mattress' never arrived, so I slept on the Chinese Torture Chamber (as the nurses refer to the couch). Actually, "slept" is being rather optimistic. But this is not about me, this is about an amazing young man, who has yet another hurdle to jump.   Monday I asked the nurse to see if there was anything we could give him for his cough. They were waiting for the Doctor to arrive and then we could assess the situation better. He is still on IV fluids and antibiotics. We were advised that protocol with high fever in patients under treatment is to give 48 hours of antibiotics. 

Dr S. came in, checked Zack's chest for any murmurs. He said his chest still sounded clear but would call in Robitussin for the cough. He headed out and Zack decided to move into the chair for better comfort. At least he realizes that sleeping in the bed (he usually likes the torture chamber) is better for him, since he sits up. Zack started watching a movie on Netflix and feeling more comfortable about leaving him for a couple of hours, I head out to the local store for our weeks supplies.

It takes me the full two hours to get a few drinks, snacks and lunches. We had left the house with just a couple of days of clothing, so I purchased a couple of t-shirts and undergarments for Zack. I grab lunch for the two of us and head back to the hospital. When I arrive back, the x-ray technicians arrive to do chest x-rays. I see that the mattress' haven't yet arrived, so I head down the hall and ask a nice young lady who is cleaning one of the rooms, for the number for housekeeping. I go back into the room, pick up the phone and call. A woman answers the phone, I simply state "I would like two to three mattress' delivered to Pediatric Floor Room 389 please!" The woman repeats what I said and I confirm. She says "may I ask who this is?", " yes I am a parent that will be staying here for at least a week and if I sleep on this couch one more night, I will have you join me to see just how horrible it really is." The woman laughed and said "I will have them delivered right away!" within thirty minutes, two men delivered them questioning "three?" I responded with "the princess and the pea, hello... I'm the princess!" With a laugh, they dropped them off and told me to sleep well.

The room is starting to take shape, just as it does when we stay for chemo. I have the lamps set up, my "bed" made up with Rhonda's beautiful comforter and she surprised me in the morning by dropping off her ottoman as well. It  feels so much cozier and more like a home than Hospital. The nurses all comment about how homey it looks and how good it smells. We have an electric wax burner that gives off the constant aroma of spearmint or peppermint which helps with the nausea from Chemo. Since it's not healthy to sit under incandescent lighting for extended periods of time, the overhead lights are turned off and lamps are the main light in the room at night. All the light we need during the day comes from a large window overlooking the flat roof. Though it doesn't  offer much of a view,  the sun shinning in on a beautiful day makes up for it.  I know I will sleep better tonight, but my main concern is, how will Zack? With the constant coughing and his head hurting more, we decide that Benedryl at bedtime will be the best solution. The Doctor returns in the afternoon and tells us that Zack does have pneumonia. They are going to order a CT scan, but since it is so late in the afternoon it won't happen until in the morning. They will continue to monitor his temperature, which is staying right around 99.7F.  He has tried Robitusson and Sudafed but neither has much of an effect on the cough.

Zack and I settle in. He is watching a show on football. At first he thought it was a movie, but soon realized it was in fact a documentary. He became so engrossed he asked me to join him. "Undefeated" as it turns out, won an Academy Award in 2011. It is a documentary of an underdog football team who look to reverse their fortunes with coach Bill Courtney. I would highly recommend watching it, even if you don't like sports, it's amazing to see how these kids lives are turned around, by a handful of loving, caring people. THIS is what it's all about!! What we can do for others!!

Rhonda stops by so we can have a quick dinner downstairs, I'm not really in a talking mood tonight, with every word I am angry, frustrated and want to just cry. I am second guessing everything I do for Zack. Were we right to send him to the Monster Truck Show, did I get him here fast enough, am I right in trusting all they are doing for them, are they doing enough for him and fast enough, is there a question I didn't ask, or a test I should have demanded. We did find out later that Zack could not have gotten sick this quickly from the show, this has been gradually working into an infection.

I return back to the room and Zack is feeling worse. He is loving and asked if "I" was okay! I tell him I just need to make a quick phone call. As I walk out into the main entrance to the Pediatric Wing, I sit in a chair near the large picture window overlooking the parking deck. As soon as I sit down the flood gates open and I have a good cry. I call Nancy (BFF) and share my feelings. It wasn't that long ago that they were in the same position, staying at the hospital around the clock with their daughter (from a life threatening car accident). I believe in the medical field, that there are great benefits, but I was raised more on the spiritual and holistic approach. Having been raised by a Christian Scientist father and witnessed healings in my own home and with myself, I still hang on to a lot of those beliefs. I know there is room for both, but have forgotten the spiritual aspect (I'm not talking prayer.. I have Unity on speed dial). Nancy reminded me how my thoughts can effect the situation. She reminded me to change my negative thoughts into positive, to see Zack as healthy and not accept every word given as the ONLY word!! We both shared how our mother's are strong women and how much we lean on them, but there are times when we want to protect them. I tell my mother everything! That will never stop! But there are ways to tell and when I'm crying and feel like I'm falling apart, it's not that time. By the time we end our conversation, I am relaxed and re connecting with my inner calm. Frank calls to check in on us both. I can hear how upset he is, that he can't fix this and he is reminded of his own experience with pneumonia when he was a kid. To this day he remembers the head pain from coughing and having to be in the hospital for five days. Of course, he realizes nothing compares to what his son is going through, but he can be empathetic. We have been advised that it will take all week to get Zack healthy and next week will start his chemo treatment. Frank and I are making arrangements for him to come Wednesday night and Thursday so I can at least work one day this week. I will then return Thursday night through Sunday. We will then figure out next weeks schedule.

It is now Tuesday morning. Zack had a fairly good night's sleep. He would cough when he had to get up to use the restroom, but otherwise slept well, thanks to the Benedryl. We are awakened at 9 am by Chris, our nurse for the day (and as I tease him, a Vin Diesel wanna be).  He is accompanied by a young lady who is here to bring Zack down for his CT scans. While Zack is away I jump in the shower and get the room in some semblance of order. The counter is full of chips, danish, Gatorade, water, ginger ale and green teas. There is a small "parents room" down the hall with a small refrigerator. In that is a tray of cheese, salami and crackers, as well as his favorite hot wings and Greek yogurt. Never knowing what or if Zack will eat, I want him to have enough of a variety. By the time I am finished with the room, Zack returns.

Karen, our social worker from the Cancer Center comes in to visit for awhile. Zack is sitting in the chair and in good spirits. He is talkative, but soon realizes that it comes with the consequences of coughing. He tries to eat a little danish, but after two bites, gives up. I received a bill from the Hospital for one of the Hospital stays last December and it shows that we owe $9,000. Knowing that the deductible and out of pocket has been met I freaked out. Since I am not home and left a lot of the paperwork there, I ask Karen if she can get me a print out of that day / week of services so I can determine what the problem is. I'm hoping it is a billing error, but one never knows. Insurance doesn't guarantee they will pay everything! She returns with the printout from "their" orders and offers to help should they need to fax anything to me, by bringing it back to the hospital. Luckily, I find the insurance website and look up the Explanation of Benefits (EOB). Though it is still not clear, I can make the necessary phone calls tomorrow and hopefully figure it all out.

Dr. OB is on call today and comes in with confirmation that Zack does indeed have pneumonia. They fear it is fungal by the looks of the scans. They also did a CT of his sinuses and he has all but one area that is clogged. Though this is considered "normal" for one under the type of strict protocol treatment, it is still a concern. The good news is they now know what medicine to give him for his sinus infection. I make a comment about wishing Drs. Steve or Nancy could be here with their activators. (we had an ice storm last night so everyone is grounded) Dr. OB asks what that is and what is done with it. I proceed to explain how it helps to relieve the pressure on the sinus when used in specific areas of the face and the sinus in most cases open up and drain. He is fascinated with this and says "hey if it works" to which I reply "it does!!!" Like I said, there are many things out there that work!! I further explain that since working for the Cagens I have not had to take sinus medication and I used to have to take it every year!! The Dr. then tells us he has contacted one of the best Drs to do a Bronchoscopy . He tells us that Zack is not to drink or eat after midnight tonight and the test will be done at 11 tomorrow. He will be given anesthesia during this and once done and several biopsies are performed they will know exactly if it is viral, fungal or bacterial. They will then move right into the proper treatment.  (A bronchoscope is a device used to see the inside of the airways and lungs. Although it can be flexible or rigid, a flexible bronchoscope is almost always used. The flexible bronchoscope is a tube less than 1/2 inch wide and about 2 feet long. Rarely, a rigid bronchoscope is used.  The scope is passed through your mouth or nose, through your windpipe (trachea), and then into your lungs. Going through the nose is a good way to look at the upper airways. The mouth method allows the doctor to use a larger bronchoscope.) They will go through his mouth. 

The good news is that Zacks counts continue to be up, which means his body is able to work on healing itself as well.  We spend the rest of the day relaxing, Zack watching shows to keep his mind occupied and me trying to catch up on reviewing medical bills, EOB's and phone calls. I had a Webinar that I signed up for a couple of weeks ago, discussing  Medicare Billing, Coding and Procedures ( I know, but I find it interesting). I had originally thought it was noon EST and turns out it was Pacific, so at 3 pm I sat in for about two hours and listened to the most boring voice, not a good speaker at all!! with um and you know's all over the place, but the information was good, nothing new, but good. 
By late afternoon we had Leah, her baby and new boyfriend (this week) come to visit. It was a nice short visit. I played "mother" and twenty questions to him. At first he was stand offish, but by the end of the conversation he said "you're pretty nice." DUH!!! Of course I am! (smile) . Once they leave I sit and start writing the blog. I'm never sure why, maybe I'm long winded, but it usually takes me a couple of hours. I take a break and head downstairs to grab dinner. My "partner in crime" Sister Rhonda could not join me tonight. She got a new job and starts training next week. With me being in the hospital and work, we are spread thin for a week or more, so, She was taking Mom shopping today for groceries. Enough to last a couple of weeks! 
On my way through the cafeteria I see the young man that would usually bring Zack's meals to him (had we not cancelled them all). He walks up to me and while giving me a hug, asks how Zack is. His name is Nick and he is the same young man that stopped me in the hall earlier this week asking the very same question. I filled him in on the latest and he tells me to tell Zack hello and he is wishing him well. He tells me he will be back on Saturday and even though he doesn't deliver the meals to Zack, he will stop in to say hi! THIS is what makes these days special. To the Pediatric Team, we are not a number, we are a family and we all form a special bond that I will take with me forever!
I am in the middle of my meal (which was so dry I was trying to figure out whether to finish it or throw it out) when I got a text from Zack asking me to come back up! He NEVER has done this, so I jump up, grab everything, throw out my dinner and run down the hall, around the corner, up the elevator to his room. He looks upset and scared, he had thrown up (something he HATES!) He apologizes and says he didn't mean to take me away from dinner. "That is what I'm here for!"  It turns out he had such a bad coughing spell that he lost what little was in his stomach. I get the nurse to come in and he gives him some percocet for the head pain. Since it's better for him to have some food in his stomach with that medicine, I grab some saltine crackers from the nurses station and he manages to eat a few along with his water. 
I have him order a PPV movie on his computer from DirecTV (free advertising) as I know it will keep him occupied until time for bed. Rhonda calls and says she has presents for us and will bring them by in the morning. More spoiling!! We are exhausted but feeling that things are heading in the right direction. It will be weird to go home tomorrow night and return to work on Thursday, but I am looking forward to a "normal" day and know that Zack will be in very good hands with Frank and the Nursing Staff and Doctors. 
It is now time to rest my head, get hooked on the next episode of "24" and pray for another good night's sleep for Zack. Until tomorrow, Thanks for all the notes, texts, phone calls and posts on FB. We are NOT alone in this Journey and THAT is what makes it more bearable!! 

Sunday, February 24, 2013

Seriously? Really? Is THIS happening now???

Saturday was pretty much a relaxing day for us all.  I stayed home and relaxed, while Zack and his friends prepared for the Monster Truck Show at the Agricultural Center. There are now going to be four going. Drake, Donald, Zack and a friend of Donald's from Hendersonville, Jordan. They all agreed to meet at the Ag Center entrance. The house was full of guys talking about the show, girlfriends, breakup and breakdowns. There is certainly more drama in the Kensinger - Fisher house, more than we really want, so a couple of times I had to lay down the law and tell them "Leave the drama at the door." 

The guys left the house around 5:30 pm and agreed to text me when they arrived. (Of course Zack promptly forgot to do so). Frank and I settled in for the evening with the latest James Bond  movie on pay per view. Mid way through the movie the driveway alarm sounds. We look at each other and with an expression of sadness, KNOW that it is Zack. Sure enough, in walks Zack, Donald and Drake. It is only an hour and half into the show, so we know something happened. Zack sits down and proceeds to explain to us just what happened. Thirty minutes into the show, he went to the front door with Donald and asked to have his hand stamped so he could go outside for fresh air and return. Donald also asked to go out and get a coat from the truck. Donald's hand was stamped, then the guard told Zack he needed to go to the smoking area for fresh air. Zack explained that he is under chemo care for cancer and isn't supposed to be around smoking. The guy got within inches of his face, looked him up and down and said "if you go out, you don't come back in." Zack asked if he could then, go and get something out of his truck, just as his friend was allowed, the guy asked "what do you need from your truck." Zack responded, "nothing, I just need to get fresh air for a minute and it looks like that's the only way I can go out." The guard, repeated his previous comment, so Zack opened the front door and went and sat in his truck. he let his friends know where he was, but told them to stay in, he was fine!! Of course, being the amazing friends they are, they didn't want to stay if he couldn't enjoy the show, so they came out and returned home.  I immediately called the Ag. center and left a message for the manager, then wrote an email to both managers and marketing directors of the Agricultural Center and Monster Truck Enterprises. We shall see what, if anything is their response. Zack was angry and I just couldn't believe the treatment. It doesn't even matter if he knew or didn't know that Zack was under care, but to treat each person differently, doesn't cut it. Poor Frank didn't even have a chance to react, I just jumped right in there and took charge. As I posted on Face Book later that evening, "No one messes with my boys!" There was no other way to end the evening, we all just went to bed hoping tomorrow would be better for them all. 

Sunday, was the start of a new day. Frank went fishing with Matt and Mitch. Zack and Austin were to go to work for the day. Donald who is still with us, went to help another friend for a couple of hours. As I started to clean up the house I get a call from Zack, who is out of breath. He said he didn't feel well and wanted to know if he could come home. I know that Frank and Zack have an agreement, if Zack doesn't feel well, he is to return home, no questions asked. I remind him of that and tell him to come home. When he arrives, about thirty minutes later he lays on the couch, I put a blanket on him as he has the chills and he takes his temperature. It is 99.8 degrees. We know if it hits 100 we are to call the doctor and possibly go into the hospital. I cover him and go back into his room to finish vacuuming. Within 20 minutes I come out and check on him again, he is shivering even more. He takes him temperature, looks at me and holding the thermometer towards himself says "shit!".  I say "100?" He says "101, let's go!" We already have a bag packed for each months hospital stay, so I grab that, he throws some clothes in a suitcase, I throw some clothes in my bag and we are out the door.

We arrive at the hospital within an hour and half after the initial phone call to the doctor. I drop Zack off at the main entrance and go to park the car. Once I arrive on the third floor (pediatrics), I locate his room and he is laying there waiting for them to come and take his vitals. The Doctor comes in and orders blood tests. His concern is pneumonia, but it could also be viral. He says at this point it is a guessing game, but our primary concern is to keep him hydrated. We won't know any results for at least 24 hours. When he listens to Zacks back and chest, it appears to be clear. His cough is dry, which tells me it is not pneumonia, but I'm not a Doctor. The team doesn't seem to concerned. They say it is unusual for him not have been in here earlier in his treatment with an infection. especially the intense treatment he is undergoing. The Doctor tells us that he will stay in Hospital until this clears up and if his counts are still up high (as they were on Friday) we will move right into his next chemo treatment (which was scheduled for this Tuesday).

His port is accessed twice. The first time Will could not access it easily, this is not uncommon for Zack. His likes to "dance" and move around a bit, making it harder for them to locate. Once accessed, he is started on antibiotics and IV fluids. I order a couple of mattress' for on the floor in preparation for a long week. Later in the day, when the coughing increases he is given Benedryl. They are not yet sure if it is viral or bacterial, but say it is always better while on chemo to start immediately, as the body has no way of fighting off infection. He sleeps quite a bit during the day which is good for him. The more he can rest the easier it is for his body to heal. 

At dinner time, Rhonda calls in response to my request for company for the meal. We go to the cafeteria as I don't want to be far away from Zack. I leave my cell phone number just in case they need to reach me. We are able to have a relaxing dinner and when we return to the room Zack is sound asleep. Rhonda and I start to watch Oscar pre-show and later the Oscars. Zacks temperature stays right at 100.3 for most of the day. He is started on is second set of antibiotics. It is now 9:30 pm and the mattress' still haven't arrived. When I ask a nurse at the nurses station, she simply says "housekeeping doesn't have time to get them." I realize when I walk Rhonda downstairs to the exit all the rooms which were previously empty are now full. Housekeeping must be working over time to clear everything up. Rhonda offers several times to bring back a comforter, but I don't want her to go through all she must to get it back in. She and I say goodbye and I return to the room. The nurse apologizes about the mattress and says they are trying to locate some. There is a quiet knock on the door about thirty minutes later and it's Rhonda. She is standing there with her comforter and down pillow, as well as a little bag with oat meal, hot chocolate packet and tea bags. She had to go through security, have her picture taken, a badge created with her name as well as Zack's name all just to bring me up a couple of special items to make my stay more comfortable. Of course I told her she would never see her comforter again, it is beautiful and would look grand on our bed at home. I don't think she will go for it!!!

As the evening wraps up, Zack wakes up, sits in the chair, complains about his body aches and just as quickly goes back to bed. He is grumpy, which is totally understandable. Instead of being here for five days, he will more than likely be here for seven. We are grateful that he has not had to be in here before now, but wish he never had to be here at all.  I prepare for bed and review all the many loving messages on Facebook, Texts and Emails. With so many friends and family standing beside us, we feel so loved!

Friday, February 22, 2013

"Look Mom, I have eyebrows!"

We are at the Cancer Center. It is 9:30 am and we have just found out that Zack does not need a transfusion. He is feeling great and he and Donald are running up and down the hall scaring the nurses with his many masks.  At one point, Zack looks at us all and says "Look Mom, I have eyebrows." Of course it was the little bits of yarn on the mask. We are just waiting for the Doctor to come in and go over his labs with us and check his leg to see how it is healing. As you can see, Zack is in a great mood. He told us this morning that he knew he wouldn't need a transfusion, so this means we have the rest of the day to "play". 

"Look I have eyebrows"
His plans for Saturday, are to go see a Monster Truck show with Donald, Drake and a couple of other friends, so he has even more reason to be excited. The last time he was "allowed" to go to something of this magnitude (where there are large crowds) it sleeted and it wasn't safe for him to go out. Today his counts are at a very safe level. It's so nice to see him bubbly again and goofing around. Of course, with my sense of humor, I told the boys that they could only go if an adult was present, so I had to go with them. I wish I had taken a picture of their expressions. After a few minutes I let them in on the joke. I have been advised that payback is hell!!! We headed out and went to check out a furniture store I have been following on Face Book. This store is actually the reason I made a new friend in Asheville. Karen Marie and I have promised to meet in person some day for coffee. Our story goes back to December as mentioned in my previous blogs. 

The store was very nice. It has high quality used furniture, they either handle on consignment or from Estates. They had a gorgeous red leather sofa and matching chairs and ottoman. It turns out the set was hand made in New Mexico by a Native American. You can see all the details, the fringe, the craftsmanship. There was only two problems. One was the $1,200 + price tag on just the sofa alone, the other the size... huge and that won't work in our small living room. The owner of the store showed me the original receipt for the items, $24, 000 Thank you very much!!! While there, the boys went in to a hobby shop next store. When I went to retrieve them, they had several model car kits in their hands. My favorite phrase is "do you have the money for those?" They look at me and with pouts on their faces, put the kits back. I don't mind spoiling them every now and then, but it is good to occasionally say no.

Our next stop was to buy the tickets to the Monster Truck Show. Imagine our (yes, even mine) excitement when we pulled into parking lot and there stood "Big Foot" himself. The owner, Darron Schnell was standing next to it, heating up the engine with a diesel heater. As I walked up I introduced myself, Zack and Donald. I explained that tomorrow is the first time in a while that Zack would be able to go to something like this and was so excited. He showed us where he enters into the truck (explaining that it's hard to get in with a fire suit when they don't bend easily). He went on to explain how he must keep the special fuel heated. It doesn't work when the temperature is below 53 degrees. It was kind of him to take the time to  explain and show us the details. At this stage of the game, we try and find as much fun as we can, heading to, returning from and during treatments.

Knowing that I really wanted to visit with Mom, Zack mentioned us going to Hendersonville. They both said they were fine with it, so we called Mom and told her we were on our way to pick her up for lunch and a bit of shopping. Being in a distracted state of mind, I told Mom we would be there in approximately 45 minutes, well.... we stopped at one more store on the way and an hour and a half later, we showed up. Poor Mom was starving, so we quickly picked her up and headed out to lunch. Donald and Zack continued to entertain.  I could tell, though Mom could not really understand everything due to her lack of hearing, she enjoyed watching Zack laughing so much.  After lunch, we went for a few groceries, stopped at a couple of other shops and brought Mom back home. Donald was being so funny, as we were leaving Moms driveway, he looked at my brother Bob and said "I love you" in a funny voice. My brother, who is quite witty himself, didn't say a word. Donald rolls down his window and says "say it back", Bob is trying to keep his composure and smiling responds with "I thought that goes without saying". Now, keep in mind this is only the second time that my brother has met Donald.

When we return to Brevard, Donald asks if we can go by his house. He wants to pick up a couple of things and wants me to meet his mother. Nancy is a petite woman, who barely weighs 90 lbs. She has survived Non Hodgkins Lymphoma, breast cancer and now has severe diabetes and cancer in her spine. She apologized for "farming" her son out to us, but said she is so worried about everything he has gone through with the passing of his grandmother and now her health issues. She wants him to know that it is very serious, but doesn't want him to have to witness it on a daily basis. She seems to be very sweet and you can tell by the way Donald looks at her, that he loves his mother very much. As we try and find a healthy balance between caring for Zack and supporting his friend, it helps to remember that there are still others out there in more pain than us, with a harder road to travel and anything we can do to help, is our duty. 

Thursday, February 21, 2013

Questions, Comments, Fear and Frustration....

Yesterday, Today , Tomorrow.... Each day brings new questions, comments, fears and frustrations. Wednesday, Zack was so eager to work with Frank. He woke up feeling well, in spite of having his treatment on Tuesday. He and Frank headed up to Toxaway to work on a project. Zack was so frustrated as half way through the day, his energy became depleted. Since the trip home was over an hour long , He ended up sleeping in the truck for the rest of the afternoon. Once they returned home, Zack came by the office for an adjustment. His back has been hurting him and he knew this would take care of that problem without having to take even more pills. He has come to a point in the treatment that he hates taking anything! He still is on the antibiotics for the infection in his leg and has to continue with the daily shot to prevent blood clots, so he gets angry. 

As I lay in bed last night, I read about other Ewings patients who have a recurrence of cancer. My fears set in and then I remind myself that each case is individual and if I allow myself to "go to that place", I could drive myself crazy. I must maintain a positive thinking pattern and know that whatever happens, this is curable and treatable!!! While in my thought process, the telephone rings. I have to laugh, because it is Zack calling from his bedroom. I had turned off my cell phone so he couldn't text me. (Those with children understand the new form of communication between rooms.. smile) Our house is a modest 1700 square feet, so he could have easily yelled for me. He said he was freezing and could I bring him a couple of blankets. This was odd, as he is rarely cold. When I brought him two blankets, he already had three comforters over him. He kept saying he couldn't  get warm. As it turns out, he had a low grade fever. We have been advised that should it reach 100 we should bring him to the Hospital (or Cancer Center if they are open). Luckily, it didn't go any higher and this morning it was back down to his normal temperature.

Today Frank decided to give Zack small errands. Zack was thrilled, he was helping out and felt like he was at least contributing. He was given some Euros for Christmas from our friends in Belgium and Louis bought them when He, Celia and Mom had lunch together yesterday. The minute Zack found out the money had been exchanged, he asked if he could take my car (less gas usage) and go to Meme's house. It turns out that he had a great visit. He and Donald went to Hendersonville and had lunch with Mom. Nancy had told me previously how good he looked and Mom confirmed as well, which always makes me feel better. We see him so often, it's hard at times to see a difference.

The office was interesting today. A couple of  times someone would ask how Zack was and I found myself feeling sad. Especially when they would tell me that I MUST be feeling bad and not to forget to feel. I responded with, "I don't have time to feel, I'm on auto pilot and will feel when it's all over." At one point a musician came in with a handful of CD's. He said he was selling them as part of a fund raiser for Susan G Komen foundation and that he plays at the "pink ball" every year. I told him about Zack and asked if he ever helps with a children's cancer fundraiser. He said "I donate to St. Judes!" I said, well, when you sell your CD's to benefit children's cancer, then maybe I'll buy one. I explained that I have lost friends and family to breast cancer and take it seriously, but I think that it is getting plenty of attention and maybe it's time that we pay a little more attention to children! He quietly left the office never to be seen again. A part of me felt bad, but then again I realize it is up to us to be the voices for these kids. 

Tomorrow we go for possible transfusions. Donald asked if he could go with us again. He has been such a great support to Zack and they have so much fun together, how could I say no? Next week will be our Hospital week and with only one more after this and the rest of his treatment as out patient, we are coming into the home stretch. 

Tuesday, February 19, 2013

" I HATE this crap Mom"

What interesting weather we are having these days. Barely winter weather with 55 and 60 degree temperatures, so when "they" call for winter storm advisory, we are never sure if something is going to happen or not. That was the case on Monday. My phone would flash the advisory for Monday night into Tuesday morning. The sun was shining, it was a cold windy day, but beautiful just the same. For a couple of days I have had a pit in my stomach and still can't shake the feeling that something is going to happen. I hate that feeling. Perhaps it is too many murder mystery shows or too much "Housewives". There is enough drama in all of these shows to create this anxiety, but I'm not secure in that evaluation. Perhaps the weather and my fear of driving in snow / ice is where it's coming from. 

Work went smoothly for both Frank and I. Less so for Zack, who, wanting to catch a couple of hours work with Frank just couldn't handle it. He was getting too hot and then was cold and ended up throwing up a couple of times at the job site. Frank immediately sent him home to rest, called me and said he was okay, it was just too much for him. In talking with the nurse today, when she asked how he has been feeling in between treatments, he simply doesn't know. She said it's common for chemo patients not to remember how "good" feels. Especially children as they adapt quickly to their new situation. Zack doesn't remember how he used to feel, he only knows that now, his energy is lower than ever, he is fed up (especially now that he must take antibiotics four times a day for his leg infection) . He simply wants to make it through even just half a day of work with Frank. Zack came by the office for an adjustment as his back has been hurting. Once he left the office, I told him to go home and get some more rest. Later in the evening, he and Donald asked to go up to Chris' house for a little while. Since he was feeling better, we didn't have a problem as long as they returned by 9 pm,. One thing is for sure, when we tell him to be back, he is back right on time. 

Tuesday morning 6:00 am Frank awakens to an inch of snow covering the ground (the rest of us were still snoozing away). He gently wakes me to tell me that we are not going to Zack's 9:30 appointment at the Cancer Center. Personally, I wish he had waited until 8 am to wake and tell me, but I'm sure he was anxious about our trip. Luckily, he continued to let Zack and Donald sleep. As I sit up in bed and watch the snow fall, it feels good that we don't have to rush out the door. Lately the center appointments have been scheduled early in the mornings and with an hour drive, we are usually up at 6:30 am. I wait until 8:30 and call Carol who tells me it is just raining in Asheville (same in Hendersonville). We know it's supposed to be gone by noon as it's warming up quickly. Carol schedules us for 2 pm and we are to continue with his Vincristine (chemo). They advise us that should he need blood or platelets he will have to return Wednesday. 

Taking our time getting ready, we leave with a couple of hours to spare. Donald stayed with us again last night. He has been unusually quiet the past couple of days, but he spent some time with his mother and I'm sure seeing her sick has a strong effect on him. How could it not. We try and cheer him up, but it isn't until much later in the evening that we see the cheerful Donald. We grab some lunch on the way and arrive in time for his port to be accessed and a "push" of Vincristine inserted into the port. The Nurse and later Doctor come in to check him out. He is all of a sudden in a bad mood. He doesn't want to be checked over again and just wants to get out. Even though this is a short day, he still resents having to go at all. Totally understandable! While saying good by to the nurses, Angie shares her concern with regards to Donald being around all the time. She tells me that I must take care of myself and not accept another child to care for. I hear her words, but also feel we need to be there for him as well. He is a very good friend to Zack and doesn't really have anyone he can rely on. When Zack tells us he needs rest or we can see that, then we simply tell Donald we need a couple of days. We schedule for Friday at 8:30 am (another early morning) for blood and possible platelets. His counts were "okay" today, but having had the chemo, we are sure by Friday, he will need a re fueling, (as we like to call it).

On the way home we stopped at Target and a couple of other stores, just for fun. I managed to find a cool T-shirt for Zack and he bought a couple of CD's with his earnings from the other day. I can remember getting my paycheck and running out to buy music. At least some of his teenage life is "normal". Once home, he asks to go up to his friends for a couple of hours. Since there is a threat of black ice in areas where the roads didn't dry, Frank and I tell him he must be back no later than 9 pm and to be extra careful. Having had the anxious feelings, a part of me really wants to keep him home and protect him forever, but I know I can't do that. I simply tell him how I'm feeling and he must take his time and be extra careful. I even call him to ensure he is there safely. Luckily he understands when I have these feelings. By 9 pm they return and are back watching their favorite shows. He isn't feeling that great, but with rest he will build back up. He made it through another treatment and his leg is clearing up. All said and done, it's been a pretty good couple of days!

Sunday, February 17, 2013

"Playing pool in the snow"

It is the weekend and none of us have any special plans, which for once is nice. Having taken Mom shopping Friday night and grabbing a few groceries ourselves, we are all set for whatever weather comes our way. The weather channel calls for snow (up to two inches of accumulation). What that generally means is our small town shuts down. Zack "mentions" that something fun is happening with his class mates on Saturday that he has been invited to. Friday night he was all excited about it and couldn't wait to go, all of a sudden Saturday morning, he is telling us he doesn't want to go. He says he has lost communication with his (school) friends and only a hand full really care about him and have bothered to keep in touch. This is his harsh reality. He gets excited and then worries something will happen to disappoint him. It gets so frustrating, one minute he is up, the next he is down. We have learned to keep calm and try and get him to talk, but this time it takes about an hour for him to realize what he is really feeling. 

As we are discussing what he is feeling, we look outside and it is snowing, so we determine that everything has been cancelled. It isn't until later in the day that I realize my level of anxiety is high. I want so badly for him to have as normal a life as possible, but he has to want the same. Sometimes, as parents, we "think" we know what our children want, but their needs are not our needs. We must learn to be still and listen to them. Yes, there are some things that we know they need, but we must take ourselves out of the equation. The snow doesn't really amount to much, so I decide to head downtown to Moms booth. Eclectic Cottage is having their one year anniversary and I figured it would be a good idea to pop in and say hello. Zack and Donald went with Drake to trade his boat for a motorcycle. Later in the afternoon, they were invited to the bowling alley and play some pool with a mutual friend. Frank stayed home and was carving at a large tree trunk in the snow. It was actually funny to watch him, he was having a great time. 

snow fall downtown Brevard
The closer I got to town the heavier the snow fell. It was beautiful! The roads were clear so I felt safe driving, which to my friends up North and in areas where winters are heavy, probably are laughing right about now. I was able to confirm with Zack that the people he was to meet were not there. I go in to see Brooke and her staff. She had a lovely spread laid out for customers and offered me a bowl of chili and drink. Since I had already decided to grab lunch while uptown, I kindly declined. Mom's booth still looked neat and clean, surprisingly there were a lot of people roaming around, it's almost as if the weather has brought everyone out to play. I check out a couple of shops and head out to lunch.

After a couple of hours downtown, I head back home. The snow had stopped and I simply wanted to go and relax. I wasn't feeling that great and once I arrived home, within thirty minutes I was feeling very dizzy. I had noticed, while eating lunch I put my ear buds in to listen to a show (my favorite past time when eating alone) and felt a sharp pain. My gut tells me I have some sort of ear infection going on, which would cause the dizziness. I call Nancy who offers to adjust me, but Frank (who later apologizes) didn't want to drive there, we also found out the roads higher up were in bad shape, so I didn't want to take a chance anyway. I took an aspirin and laid on the sofa to rest. Whenever I had to get up, Zack, Donald or Frank would take my arm and help me keep my balance. Now I have a pretty good idea of what Mom goes through when her Vertigo kicks in. Not pleasant to say the least.  By the end of the evening I was feeling much better. The rest of the evening was spent relaxing, watching TV and playing Words with friends. 

Sunday was pretty much the same with the exception of me going anywhere. I stayed in my pj's most of the day. Zack and Donald were in rare form, both running around the house talking in funny voices and being typical goof balls. It is nice to see the lighter side of Zack. Frank waits until it warms up and then goes fishing with Matt for several hours. 

Zack is feeling better. His leg is healing and he asks to go play pool at the bowling alley again. His plans for the rest of next week are to work some with Frank and Tuesday we go for the Vincristine, which is his next "short" chemo treatment. He is excited to work so he can collect money to buy more parts to fix up his truck.  It was a nice low key weekend for us all and by all appearances, next week promises more of the same, but then again, we never really know for sure!

Friday, February 15, 2013

Laughter in spades!!!

Happy Valentines Day! What's in this special day? Franks , Nephew Kahlebs, and Sister in law Tammy's and my special little buddy Matthew's birthdays. It was also a very hard day for one very special person in my life, Mom. She and Dad were married on Valentines Day back in 1969. With each year, since his passing she misses him more and more. When I called her today, she simply said "I'm okay, I'm in bed." I understand that feeling. I know what it's like to stay in bed and want to hide out from the world. Not face reality, even if just for one day. She has every right to stay in bed. 

Zack had the day to relax and hang out with Donald. He ran a couple of errands for me, like taking jewelry boxes that I re organized back to Mom's booth and pick up Franks birthday cake I had made from our local bakery. Frank used to love it when his mother made red velvet cake with cream cheese icing and since I lack the talent and time, as I told him later "my birthday present to you was to hire someone else to make your cake." He thought that was hilarious. I could tell Zack was tired and felt bad about asking him to do these, but he insisted he was around town anyway and he wanted to help with Franks dinner.

He and Donald went back home and hung out with Lyndsay (Donald's girlfriend and former neighbor of ours). She is an absolute sweetheart, so it's always a pleasure to have her visit. We invited her to stay for dinner, but she had plans to hang out with her Dad.  Zack had grilled some steaks outside and I prepared the balance of the meal. The four of us sat down and enjoyed a nice relaxing dinner. This was the first time Donald has ever had steak, so it was a pleasure to see him enjoying it. We sometimes forget and take for granted what we have, Donald has a way of reminding us how truly blessed we are. Zack has hidden the cake in his room until time to light it (we used a tea light candle) and presented it to the Birthday "boy" with a loud Birthday song.. Frank was touched as I reminded him of the cakes his mother used to make for him, as he remembered, he shared a couple of stories of special birthday's when he was younger.

The rest of his night was what he had asked for, a meal, the couch and sleep. We left him sleeping on the couch and I told the boys it was bed time, as we have an early day at the Cancer Center.

It is now Friday. We again begin our day at 6:30 am with an 8 am appointment. This appointment was for blood transfusion and possible platelets. Donald insisted on going with us again, even though I "banned" friends from full days at the center. He has a special humor and having him around, helps Zack to lighten up a bit more during treatments. We arrived, Zack's port was accessed and now the waiting game. Does he or does he not need blood. Dr. B came in to check out his leg, which is now obviously infected with an open area. The good news, it's not a tumor, the bad news, Zack's counts are not conducive to quick healing. Thus, he must continue taking the antibiotics until gone and use the special cream as well. Finally, I am breathing again.

The nurse comes in and says that his counts are right on the border, but they are going to give him two units of blood since they expect his counts to go down more over the weekend. They have ordered the blood, but they expect it to be an hour or so before it arrives. Since the room is small and I have bookkeeping to get to our CPA, I move to the children's art area in the lobby. I sit at a small square table with bright colored green chairs. There is a large picture window overlooking the Hospital which is directly across the street. The sun is shining brightly into the room and the heat that is radiating on my back is almost healing and relaxing. As I begin on the bookkeeping, a couple of children come in with their mothers. One we see all the time, she is enamored with Zack and asks who his friend is. This is the first time that I sit in this area, so it was a completely different and special experience. Zack and Chris came out to join us, saying they were bored and wanted to wait there for his blood to arrive. The young girls mother and I share "cases". He daughters was in the knee bone and had a portion of her bone removed. I see that her hair seems to be growing back, but don't mention it. As we have discovered, the hair can come and go during treatment and for most is a very sensitive area to talk about. As we continue to sit there, more people come in and more stories are shared. We are joined by nurses who are coming out to get blood pressure, temperatures, etc... It is loud and full of positive energy. I have yet to see anyone walk in with a gloomy look on their face. Both parents and children are full of smiles and almost excited for the next step to begin. Perhaps we are all counting the days until these treatments are over. As I continue my paperwork, I look up and see Megan and Melanie (my very good friend .. also Chris' mom and sister). She is here to have some tests run from her previous stay at the hospital before Christmas. She runs up to me and Zack and gives us big hugs.

Mel and I visited for quite a while. Neither of us has had much time to get together (she has three other children and helps care for her sister and mother). She shares how she wanted to do a fund raiser with bracelets for Zack at the school and they said they already did their "thing" for him and can't discriminate against the other young lady who also has cancer. Mel was shocked and said it was never her intention to do that, she simply wanted to do something for us and understood. I'm sure the school officials are now (with three students battling various types of cancer) being faced with new challenges they have yet had to deal with. She advised Mel that they were looking into doing a joint fundraiser in the Spring for both families, but wasn't sure if that could happen or not. Mel was disappointed, but if I know her, she won't give up. My gift is that Zack is graduated and the rest will be full of celebrations!!

As she and Megan go in to see the Doctors, I head out to grab lunch. When I return, Zack and Donald are back at the table, this time with his blood transfusion starting. They are sitting at the table drawing. The arts teacher gave them all sorts of papers, cut out gadgets, strings and pretty much anything else they could think of. Zack drew his favorite animal, the octopus. He says it's his favorite because when attacked it can detach a tentacle to distract it's enemy and get away. Later the detached tentacle will grow back. He likes the idea of regeneration, which makes sense, what he is going through is a form of that.  Donald is making a mask and once finished, presented it to me as a gift.  He also made a lovely Valentines card for his girlfriend. We are all being super silly and laughing so much at times it was hard for me to gasp for air. Zack drew a stick figure on his hand and a line underneath it, he then proceeds to show me and everyone else in the room that when he moves his had, it appears that the stick figure is jumping on a trampoline. This entertains the entire room for at least a half an hour.

Time seemed to fly today. I got all of the bookkeeping balance and sent to Ruth, all the while visiting and having fun. Rhonda had asked if we could all have dinner together, but Zack was starting to feel weird. (We later determined it is the antibiotics that are upsetting his stomach). As we are driving towards Brevard, both boys ask if we can make a quick stop at the Western store on our way. Of course, I would do anything for them, so, we stop, Zack looks at belt buckles, hats and wallets. As we walk through the boys start trying on cowboy hats. They are even putting them on me!! Zack is not impressed with his lack of hair. He says "how do I even know what I would look like in this with hair?" He has always wanted a western hat, but has decided to wait until his hair has returned. He decides to get a hat and I surprise him with the wallet. Zack mentions that he is starting to feel a bit better and we agree to meet Rhonda for a "Belgian break". This is the time between lunch and dinner when we grab a sweet treat with a cup of coffee or hot chocolate.

Rhonda and Peter are thrilled to meet us at Denny's. We place our orders and the humor begins again. Rhonda has never met Donald and he is in rare form. As he sticks four straws together and tries to drink his beverage, the straws come loose and I am sprayed. There wasn't a dry eye at the table, as I jerked back and everyone thought is was hilarious. Rhonda looks at me and says "Oh my God, he is a male version of you!" Then it hits me. Donald is the clown (which I have played for many years). He is the one that is trying to make everyone laugh, especially his friend. He has been through and is going through so much and yet he is trying to make us feel comfortable. Another friends we are blessed to have in our lives. Zack has laughed so much today, he even said the day just flew by.

As we are driving home, we hear the weather report is supposed to include snow tomorrow. Rhonda and Mom were supposed to go grocery shopping, but my fear is that the bad weather will hit Asheville first and Rhonda won't be able to make it to Hendersonville, where Mom lives. Zack calls Drake, who agrees to meet us half way and bring Zack and Donald back home. I then go to Hendersonville and can take Mom shopping. Everyone wins!!

Mom and I head out to the grocery store, we grab enough groceries to last her a week. We are having a great time visiting and decide to continue on with dinner. By the end of the evening we have spent about three hours together and have our mother - daughter "fix". I know how hard yesterday was for her and am pleased to see she allowed herself a day to mourn and today has moved on again appreciating life, or as she puts it being "content".  I now can return home knowing Zack will continue to heal. We go Tuesday for his Neulasta (Chemotherapy can lower your white blood cell count, raising your risk of infection.1Neulasta® helps boost your white blood cell count—your body’s natural defense.2 A sufficient white blood cell count may reduce your risk of infection.and return to the Hospital week after next, so his body can catch up a little next week.

Wednesday, February 13, 2013

Reasons to celebrate!!

Since Zack had the milder chemotherapy yesterday, today he was only required to have his Neulasta shot and lab work for his blood clot medicine levels (Lovenox).  I asked him to stop by the office for a couple of bags of specialty chocolate I purchased as Valentine's gifts for the nurses and doctors. Of course, I find out later that he forget them in his truck, but we will have a chance to give them out on Friday, when we return for blood and platelets. 

He arrived early for his appointment, bringing Leah, baby Landon and Donald as his company. He was in and out of there in fifteen minutes which thrilled him. As he was heading back to Brevard, I called and asked if he minded going into Hendersonville to Mom's to pick up her couch. She had purchased a "new" one at Habitat and they didn't feel like taking her old one (which is still beautiful, just not as comfortable anymore). So, being his typical agreeable self, he headed in that direction. He picked up the couch, told his Meme that his leg is healing up very well and was back on the road, now with a bright gold toned couch, on the back of the bumble bee!! What a sight that must have been! Instead of going to the dump with it, they stopped at a thrift store in Horse Shoe (a small town in between Hendersonville and Brevard). He said the lady there was thrilled to take the sofa, as was he that she took it. Mission accomplished!!!

Frank worked all day, as did I. The weather was cold but he was able to work on his maintenance jobs. At lunch Nancy and I were heading out the door when she spotted a package. Picking it up she saw my name on it, but since we had to return early for a new patient I opted to open it when we returned. What a wonderful surprise! My hubby had arranged to have the box delivered to the office for an early Valentines Day gift. It was filled with a dozen huge chocolate covered strawberries! Since I already ate 5 of them, I can attest to the fact that they are DELICIOUS!!! He has never been one to do things like this, so when he does, it makes it all the more wonderful!! He and I have been through so much the past couple of years and knowing that we are getting stronger as a couple is the best gift in the world! The chocolate strawberries are a pretty close second. His birthday is tomorrow and I have a few tricks up my sleeve as well. Not being one to bake much, I arranged for the local bakery to make a two layer red velvet cake (his favorite) for him. Zack and I already arranged to make him a steak dinner and the cake will be his surprise. It's so nice that we will have the time to celebrate his special day, just the three of us, which is just how he likes it. 

The rest of Zacks day was spent hanging out with his friends, who were out of school early today. His leg feels better and it's easier for him to walk. He is frustrated that he has to take antibiotics and doesn't want to continue with them even though his leg is getting better as a result. We try and explain how it all works, but who can blame him. He has never been raised taking a lot of medicine. He has always been healthy and still is. The chemo and radiation just puts things out of whack for awhile and until he is done with treatments his body won't be able to fight off any kind of infection. He promises to continue taking them until we talk with the Doctor on Friday. Once I arrived home after work, he showed me his leg and it does look better, but still has an infection, so I firmly tell him to do what he has been told. He isn't in the best of moods, but agrees to do so. I am breathing so much easier, as is Frank. The fact that it is getting better and smaller in size is great news

Zack told me that he also got some good news at the Cancer Center today. He said his treatments should be done by the end of May or middle of June. They were  "supposed" to complete around the end of April but with the delays in giving treatments (due to his counts being low several times) it will be later. We will be celebrating his graduation as well as the end of treatments. What a Summer we will all have!!!

Franks creation at our house!
It still seems so far away, but we finally have something to look forward to. Once treatments are completed, he will be tested every six months for several years, to ensure there is no return of  Ewings.  He will be able to return to school to learn his trade, get a part time job and pretty much live his life. 

Tuesday, February 12, 2013

"Mom you are seriously twisted"

This day couldn't come to soon for me. Zack of course, is not so thrilled, as it is chemo week.  Having waited since Friday (when we discovered the bump on Zack's leg) we have been anxious about having the Doctor look at the area. 

We arrive at the center around 9 am, which allowed us to sleep in a bit. Well, I did, Zack spent the night at Drakes so he left there when the kids left for school. Melanie does the usual height, weight, blood pressure, temperature checks. She then takes us to have his port accessed. She knows by now not to comment on his skin color and whether or not she thinks he will move forward with chemo. It's hard to tell really and we usually get it wrong.  His blood is drawn, usually three samples and she then sends us to one of the rooms with a couch and chair. Apologizing, she says that two rooms with beds are reserved for smaller children. Zack is thrilled, as he doesn't like being in the bed. He picks room #8 and announces it as "HIS ROOM". 

He settles in and pulls out his laptop. He reaches in his pocket for his cell phone and then forgets that it was damaged by water (a glass spilling over) at Drake's house last night. We filed with the insurance company, but it is taking a couple of days for them to review, since this happened to him before. (Just another "person" for me to fight with, should they turn us down.) I set up a mini office on the couch, setting up my laptop and pulling out the folders of those organizations I need to contact today. 

Zack has told me on the way to the Cancer Center "whomever wants to check out my sore, better ALL get their asses in the room at the same time and look at it, 'cause I'm not pulling my pants down all day!!" All of a sudden I come up with a funny idea. (I try everything to find humor to lighten the mood). I tell him " on the day of his final treatment , we need to be in one of the exam rooms, facing the hospital nursing garage and moon everyone that walks by!" He thinks it is hilarious and says "Mom, your so twisted, I never even thought of that, hell DONALD never even thought of that!!!" We both get a good laugh and then I explain how I totally understand where he is coming from with regards to looking at his bump and assure him that only the Doctor will look at it. He tells me that HE will be the one to tell the doctor, but right or wrong, I needed to talk to him first to share my concerns. Zack still doesn't share everything and I wanted the doc to know how much pain he was in and how hard it was for him to walk, so much so, that he laid on the couch most of the weekend. I go to the front desk where all the Doctors and nurses are working and ask Dr. S to come out to the hall. Luckily he too has a 16 year old son and understands the shyness. He assures me that he will be the only one to look at the leg and will do so discretely. As I re enter Zack's room, I tell him what I told the Doctor. He isn't thrilled, but later thanked me for taking care of things. Every so often I remind him that it IS his body, but it is also our responsibility to ensure that everything is known about his condition, no matter how little he may think a problem may be. 

Shortly after talking with Dr. S. he enters the room. He says that the counts are right on the boarder and he can have his chemo treatment today. It isn't until later into treatment that we both realized he didn't get the red stuff (which can make him very sick!). Melanie explained that he is nearing the end of the life time maximum on that particular drug, so they are skipping a week here and there and giving him the milder chemo. The Doc explained that he understood no one else was to look at the sore on his leg and appreciated Zack letting him take a look at it.  I didn't really like his expression when he finished looking. He stood up and said "we are going to put you on oral antibiotics and an antibiotic ointment, if it doesn't clear up in a week, we will order an MRI." He looked at me with concern, which caused me to freak out internally. Once the examination was completed, I went outside and asked him if there was something for me to be concerned about. He said he just didn't like the fact that it was infected and with his counts low, he wanted to make sure it would heal. He said it is unusual to develop another tumor, especially while on treatment, but needed to rule out everything. He would have a better idea once the infection was gone. The fact that it was also so painful and his tumor was not, is a good sign. Looking for more comfort, I asked a couple of the nurses and they said he would have ordered MRI immediately if he was concerned. So, considering they have been taking excellent care of him and have never hidden anything from us, I am going to relax and know that he will be all right. 

As Zack was receiving treatment, I ran to grab us lunch and pick up a loaner cell phone for him. The rest of the day was spent on the phone making payment arrangements with the Anesthesiologist, Cancer Center and Mission Hospital. All had agreed to a "charity care discount" based on our income, with the exception of Mission Hospital. Susan ( a rather condescending woman) finally (after a month of waiting) answered my call and said "I sent you a letter a couple of weeks ago, to 130 ....) I explained that was not the right number we are 176... to which she replied "oh, well then, I'll send you out another one. Is there anything else I can do for you?" I reply with "yes, you can tell me if I won the appeal?" " oh no, you didn't! the others that honored this went by the old income guidelines , we are going by the new ones."  "So, everyone else got it wrong and you did it right?" "Yes" was her response. I told her that I would be submitting a new application, as our CPA was finishing up last years personal taxes and we will then see if we qualify. Never a dull moment. At least, for now I know what their guidelines are and will have an idea before submitting a request whether or not we qualify and I can now set up payment arrangements with them and have the phone stop ringing all day with debt collectors. 

I had some time to visit with Karen (our social worker), who gave me some other names of people to contact at Mission, as I also received a $259.00 bill for a couple of weeks ago when I went in and then had to walk out of the ER, without receiving any kind of treatment! I would hate to think of how many people are paying bills that they are not meant to pay, simply because they are sent to them. 

We wrapped up around 5:45 pm. Since we are having a Valentines party for our patients on Thursday, I stopped by Sams Club (you are welcome for the free advertising) and picked up some cookies, fruit and drinks. Zack stayed in the car, as he wasn't feeling great and I didn't want him in a large crowd. Within twenty minutes I was back in the car and we were on our way home. Since he just has a Neulasta shot and Lovenox levels tested tomorrow,  Donald can go with him. He calls him on the way home and they set up a time. Of course, later in the evening he comes over to spend the night and try and cheer Zack up.

Once we arrive in Brevard I remember I have a prescription of my own to pick up (I was lucky enough to have Zacks antibiotics filled at the Cancer Center pharmacy earlier in the day). Zack wants Taco Bell for dinner, so we drive through as it is right next to the pharmacy and as he stays in the car I run in to pick up my "patches". Zack of course teases when I apologize for having to make another stop, he says "is it your hormone patches?" I say "yes", he responds with "oh my God, please, please get them... we can't go through THAT again!" referring to a couple of weeks ago when I didn't have them and turned into a monster!! Out of the mouths of babes!!! We both get a good laugh out of that comment.

We are finally home after stopping at Drakes to pick up his phone charger, which he left last night. It is then that his mood changes quickly. He must now drink his Mesna. I'm not sure how to describe this "STUFF". The scent is so bad you can smell it from another room in the house with the door closed!! It gets harder and harder for him to drink this each month. Today was the first day that I see him have such a violent reaction before drinking it. He couldn't even go near the kitchen counter due to the smell, then he gagged each time he got near the drink, he sat down and couldn't stop shaking and crying. He kept saying "Mom, Dad, I can't take it! I can't drink it". We know by now not to say a word. He knows he must drink it, why point out the obvious. As he sits on the chair in the dining room crying, I simply rub his back and tell him how proud we are of him.    He gets up and down several times, walking into his room, then the bathroom, back into the dining room. This lasts about an hour. There is a certain time frame in which he is supposed to drink it, but we can't hold him down and force it down his throat, so we just wait patiently for him to come to terms with it all. All of a sudden, he stands up, walks to the counter holding his nose and gulps it down. He grabs his drink and then a mint. The tricky part now continues as he must keep it down. If he throws up in the next two hours he must repeat the steps and drink another one. 

(The chemotherapy drugs ifosfamide and cyclophosphamide are normally removed from the bloodstream by the kidneys and broken down into other compounds. These compounds can damage the lining of the bladder and cause blood in the urine, a condition known as hemorrhagic cystitis. Mesna works by binding to these compounds, making them less toxic. They are then excreted from the body in the urine.) 

It is now 10 pm and he has made it past the two hour mark. Donald is here and the two are relaxing watching a movie. Zack is fighting me about taking his antibiotics tonight, but I still forge ahead and push him into taking it. I'm sure there are times he hates what I'm doing, but I know, one day he will understand. As I sit in bed writing the blog, Zack comes in and just sits for a couple of minutes. We don't say a word, he reaches out his hand and squeezes mine, gets up and heads into his room. This precious moment turns again to laughter by Frank's snoring while sound asleep on the couch. Zack turns to me and we both break out laughing! Frank and I had already agreed earlier tonight, he was exhausted physically from work and Zack and I emotionally, but equal just the same.