Saturday, April 6, 2013

Never underestimate the pain of another person.......

It is Friday and we are headed to the Cancer Center first for labs. Zack is not really in the mood to go in, so we make a deal. IF the lab work shows that his counts are good enough, we go in and get it over with (sometimes they will let him skip a week just to give him a break), if the labs show his counts are down, then the decision has been made for us both. He reluctantly agrees as he knows once it's over he will be that much closer to the end. 

Zack and Richard
Sure enough, his counts are good, they access his port and within an hour of arrival time, we are headed out the door to first grab a to go lunch and then come into Hospital. We arrive to a clean room, welcoming room, with towels folded in a fancy pattern and sign marked "Your room has been cleaned especially for you". It is again one of the two we usually get, in the very back of the Pediatric Wing. First thing I spot when we enter is the couch and chair. First thing I request is a recliner. We were told last month that we would no longer be able to get mattress' for us to sleep on, so we would have a choice between the couch (chinese torture chamber) or a recliner. As we are unpacking, Zack asks when the guitar man is here? He had spoken with Karen (social worker) this morning and asked if he could see him, she simply said just ask and he will come down to your room. Zack really wanted to be taught banjo, but when Richard came into the room, he advised us he only played guitar. He brought out a rather small guitar (we are in peds after all) and started to show Zack notes and chords. He was impressed with Zack's knowledge as we told him the various musical instruments Zack has played during school..(the stand up bass, saxaphone and bass guitar) none to perfection but well enough to be in concerts in both elementary and middle school. The fact he was able to pick up the notes made it easier for Richard to teach.  They spent the first hour and half playing, talking and getting to know each other. Richard and his wife are also geologist, so he was explaining how he will bring in geodes and show the smaller children how they float, and shine. He volunteers a couple of times a week and I thank him for spending so much time with us. I enjoyed just sitting there watching them play so much that I hadn't even unpacked anything. Once he left, the couch went out and the recliner came in, I unpacked everything and got settled in. Kim (head nurse) came by and asked if I had received the letter showing the timeline from last month, when "someone" messed up and got the chemo to Zack four hours late.  Wishing to move on, I simply thanked her and said I had received it. She said "we learned a lot from that experience and Thank you!! (you know when someone is feeding you a line of bull and you know it?" Yea, well...... whatever! I am determined to make this stay as calm and relaxing for Zack as possible and we are off to a great start.

As we settle in our day nurse arrives with the scale and everything else needed to get Zack prepared for his first days (of five) chemo. The nurse, whom I have gotten close to, was all smiles and sweet. She had "heard" about last month and embarrassed  I told her everything was good and not to worry. Wanting to put some focus on her I asked how she was doing and when her due date was, only to find out she had lost the baby. Here she was just a month later caring for my child and smiling. I promised her God had a plan and pointed to Zack, calling him my miracle child!! 

Rhonda ended up going into work yesterday, as her computer came up with a virus (she works from home as a phone operator for Gunther Renker... Wen, Proactive, Victoria Secret..etc..) She asked if Peter (my nephew 14 ) could come and hang out with us after school. I picked him up around 4 pm and we headed over to the local grocery store for this weeks supplies. Zack isn't quite sure what he wants so when we arrive I call him while standing in front of the drinks and chips isles as he tells me what to pick up. Peter is a huge help, pushing the cart and asking questions about his cousins treatments. As we go into the bakery I see the lady with whom I spoke last month. Her daughter has severe health issues and I couldn't help but ask how she was. She remembered me as well and told me her daughter is now in a nursing home (in her forties) and on Hospice care. I offer my prayers and Thank her for taking such good care of us when we are in town (she will grab anything she can find that is fresh for us in the freezer). What else can we do?  I find myself more and more looking into people's eyes when walking around. "The eyes are the windows to the soul" has always been my favorite quote. It is true! How many of us really look into another persons eyes? This lets them know that we are really there, really present and interested in what they are saying or how they smile, or say good day!! The smallest and easiest thing to do is look in someones eyes, even those you don't know, and acknowledge that you know they are here!!! I make it a routine and it's so much fun to see someone light up. I have met so many wonderful people this way, they have learned of our journey and have been able to share theirs with me. I found this quote by Will Smith on FB the other day and it is so true!! 

Peter and I return to the hospital, bags in tow. Zack was finishing up with his chemo treatment. Thank goodness Peter was here to help me, it would have taken me three trips with drinks and food without his help. He gets settled in as the three of us eat dinner. Tonight is pizza for the boys and spaghetti for me. Zack is playing his Xbox games and Peter, having played this particular game before is 'advising' him along the way. The boys are having a really good time together and once Rhonda arrives to take Peter home, Zack is ready for his nightly Benadryl. By now it is 11 pm and Zack gets into bed and I move into the recliner.

Around 2 am, we are awakened by the smell of something burning. Not knowing where it was coming from, I ask the night nurse, who says maintenance is trying to locate the source. They are not worried though, as no alarms have sounded and there is also sprinklers in each room. I walk out into the hall where the scent was stronger and try and follow it, to no avail. I then locate the fire extinguisher and exits closest to our room. When I go back into the room, I ask the nurse what the procedure is if there were to be an evacuation. She says they first take care of each patient and have back up nurses to come and help. Zack teases and says he can pick up the "tower" and carry it down the stairs if he needed to. SO, In my eyes we had a plan. I also put all my jewelry in my purse and had it all ready so that was all I would need to grab. Hey, I'm still practical!!! 

I was able to go back to sleep once I had calmed down and woke around 8:30 am. Dr. S came in to check on us  and the "theme" is "Hey, this is your last in house!!!". Everyone is excited! It has been a long haul and at times it never seemed like it was moving anywhere, but here we are! The Doctor decides to let Zack sleep after I told him of our exciting evening. He has ordered the chemo to start two hours earlier each day, that way we can get out of here early Tuesday afternoon instead of the evening. I get ready as Zack continues to sleep. Once he is up, I fix him a plate of cheese danish and orange juice and settle in for a couple of hours. My appointment to donate platelets isn't until 11am, so I have a little time to hang out. I find out from the day nurse that the fire smell was from two buildings not far from here that had been torched last night. It turns out they have an arsonist going around Asheville burning old abandoned buildings and unfortunately, he got another two last night. Luckily no one was injured.

Rhonda calls me just as I'm getting ready to leave and Peter is being your typical teenager, giving his Mom a hard time. Frustrated and having about thirty minutes until my appointment, I head over to her house and play the "tough Aunt." I take his laptop, which is his favorite thing and tell him I will return it when he can be respectful to his mother! Stunned, he all of a sudden is yes mam this and that!! Knowing (as most teenagers can be) that he could be "playing me" I follow through and exit with his laptop. Being a single parent, at times I will step in to help her out. 

I arrive at the Red Cross, I am anxious, but ready to do this!! I will need to have some way of feeling I am helping others after this is all done, so what better way to pay it back. I see how much Zack has been given because of others, so it makes me want to give back even more. The young nurse is very bubbly and we are immediately comfortable together. She is trying to figure out my accent and asks where I'm from. I tell her NJ, California, Belgium, Spain, NC... She then proceeds to laugh and says, I can here my Uncle (from NJ) my friend (From Boston) and my Italian grandfather (with the hand motions) all in one sentence from you!! I have NEVER heard anyone talk like you, it's so much fun!! I tell her I'm one of a kind!!! It takes about an hour before I'm seen, but the nurse makes it seem like everything is going to be smooth sailing. They offer me a movie of my choice (from 100+). There is a long reclining chair, large flat arms rests, headphones and a television with cable or movie right over the chair. Since I am going to be there at least two hours (which is normal) they want you to be as comfortable as possible. Usually they insert a needle in each arm, but for me, since my veins are large enough, she used a "double needle" in my right arm.She did a great job, as I never felt a thing! I am fitted with a blood pressure cuff to increase blood flow and given an inflatable ball. My instructions are to squeeze the ball each time the cuff inflates (counting to about 25 on and 15 off). That part was exhausting, as I don't have strong arms and am working muscles I didn't even know I had. The bags hang next to me (you can see in the picture) two with blood one with the platelets. This is exactly how Zack's look when he received the transfusions. The blood is pumped out, platelets sorted out with this machine and then at the end of the process, all the blood is then returned back into your system. THIS is when it was weird! The blood was cold and I got major chills when it was returned, but that only lasted about ten minutes. The entire time I am in the chair, someone is coming by to check on me, offers heated blankets (it gets cold in the room), drinks and snacks. They are very appreciative of the donations, especially now, they are very low all around the Country. Once everything is finished, the needle is removed, my arm bandaged in a bright red tape and sent on my way with a big Thank you!!

I arrive back at the Hospital by 3 pm, tired, hungry and ready for a nap. Zack is doing really well. He was already started on his chemo and playing his video. His mood has actually been very good. He has asked Frank to bring his guitar to the Hospital tomorrow night, so he can practice some more and maybe play again on Tuesday, when Richard returns. I take a short nap and fix him hot wings for dinner.  I went down to the Cafeteria and saw the young man that delivers the food trays to the rooms. He has also been a constant through all of this and even if we don't have the trays delivered anymore, he still manages to pop his head in to see how we are doing. I tell him this is our last stay and he gives me a big hug!! Everyone is celebrating! He tells me he is going back to school to get another degree. He currently has his bachelors in business and went to law school for one year, but hated it. He is going back to get his nursing degree and wants to work in pediatrics.  I told him I couldn't think of a better place for him, he is wonderful with people and has a kind heart. He will not only be an asset for the kids, but the parents as well. He told me he will miss seeing us but is glad Zack will be able to move on with his life. 

I am now back in the room. Picked up a couple of heated blankets for Zack, who was burning up last night (ac was at 62) and now is freezing cold (heat on 68). The chemo drugs do that to him each month. He is still in very good spirits and as the night nurse comes in to mark his board, she crosses out the 2 and puts a 3 for day 3 of 5!! We had the same day nurse as yesterday and now the same night nurse from last night, both amazing and both very good at what they do. This week will end as I envisioned, peaceful and easy. 

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