Thursday, July 19, 2012
It will be just two hours......
Wednesday were the CT and Bone scans. Zack and I head out to Mission after I managed to put in a couple of hours of work. Well... attempted to. The minute I got there my cell phone rang with surgeons, the anesthesiology dept, and whomever else needed Zack's information for the surgery that I kindly informed we were postponing until another opinion is finalized. Drs. Steve and Nancy being who they are, simply said, take the calls do whatever you need to do, you shouldn't even be here, we are here for you. Amazing people and dear dear friends. (Nancy is my bff, but we try and keep that our little secret... NOT!!!!)
The scans were scheduled for 12 Noon, we arrive at 11:30 and within 15 minutes a nurse comes out and says it will be 2 hours. (The two hours turned into 4 1/2 hrs as the nurse was not aware of both scans being performed... Not her department....) Zack agrees to text me when he is done, and I head down the long hall to locate a comfortable waiting area. I am looking forward to a little down time, just sit, breathe, maybe even play my video games on my phone, (yes still addicted to Majong, Scrabble and Temple Run.. hey stop laughing!) . I locate the only corner in the Hospital right outside the Emergency Room entry where the snacks are ( is there any other place?) and grab a cappuccino out of the machine. I settle on a comfortable bench near a large window to make sure I have good cell phone coverage for both the Doctor and Zack to reach me.
I lay out the folders with Zack's medical information and start to organize them a little better. I am just getting settled in when a young woman (Miriam) walks up and introduces herself to me as one of the case workers from the Cancer Center. She is sweet and has a very calming voice. I offer her a seat and she starts to apologize for anything that may have happened the day before. We talked for over two hours, I felt very much at home with her, telling her of my fears, concerns and why we felt we needed another opinion and possible treatment that would be covered financially. She pulls out her lap top and we start to handle my questions one at a time, she never once looked at the time, would sit back when listening to me, and just kept reassuring me that she had no where else to be, she would stay until I had all my questions answered. She showed me a sight http://www.inclusivehealth.org/ where you can now ( THANK YOU PRESIDENT OBAMA)... get healthcare, even if you are not insured (us) AND/OR have a pre-existing condition (again us). The coverage is $182.00 a month for a $1,000 deductible 80/20 after $5, 500 they cover 100% up to 1 million. BIG relief!! We then discussed St. Judes as she works with many of the staff there. She told me not to get my hopes up, because in her research they offered the same Trial Protocol that we were turned down (due to the surgery). She said that all Trial protocols must follow the exact guidelines. You would think after years of "Greys Anatomy" I would know this!!! That's how Meredith messed with Mc Dreamy's Alzheimer's research and they almost divorced over it.... but I digress... We talked about (sorry if you are uncomfortable with this) the fact that chemo could make him sterile, so we make arrangements for his future. I look at her and it hits me "WE are the faces on the posters of the Hospital" "When the Hell did THAT happen?" I start to cry and she sits there with comforting eyes, trying to find a kleenex. I reach in my purse and grab my Grandmother's hankie with the big letter "E" for Elvire. I tell Miriam, I have a piece of everyone with me. Including the heart shaped stone from Nancy. She stays a little longer and then I Thank her for all her time. I know feel more in control and better about our prospects.
I settle back into my corner, call the insurance company and there is another voice of an angel. She tells me to go online and you will be covered by September 1. She says "you go and take care of your baby, Momma Bear", yes I will... I can do this! I also know who to call for assistance until then (or not). I decide I am ready to hear from St. Jude's, I call and they know me, know the case but are unable to discuss with me. THIS kind of freaks me out a bit, so I call Dr. P who immediately calls me back with the news.... He discussed Zack's case with a doctor at St. Jude and because he had the surgery, he is not eligible. The good news is, they would give him the exact same protocol as Mission. Mission also consults with St. Jude's in the event something comes up. I call Frank, run everything by him and he feels we got the information we needed. I tell him about the insurance, he is thrilled, I decide to rub the Obama Victory in his face later on.. (LOL) SO...Mission it is!!
After hanging up from Frank, I get a call from Trish at Brevard High School, she tells me she is working on something for Zack showing that he needs special care. I break the news that Zack will not be returning to school, but will complete his requirements through the school. What do we need to do. She tells me to hang on and she will look into it. Two minutes later the phone rings.. and it is Lisa Chapman, Assistant Principal. She is so upset to hear about Zack, he is family, he is my buddy!!! ( Lisa happens to be Franks, and Zack's cousin on Franks father's side) She tells me she understands him not returning to school, it is too dangerous for his immune system. WELL, don't you worry, you focus and getting him better, we will get him a Chrome Pad, all the kids are getting that this year, and he can do his courses online. I will talk to him and see what online courses he would like to take that would keep him interested, he only needs one semester of English and three Electives to graduate. She doesn't mention the Senior Project, but we have that covered, Zack is going to work with a neighbor to re build something on a car (Ya think???).. She tells me how popular he is, how many people love him, she says to give him a great big hug and tell him he will have many visitors. I seem to loose it most when they talk about his school. This being his Senior Year is a big deal, but I remind him that BEING here for his senior year and the rest of the years to follow are just as important. He will not miss on seeing his friends, or staying in touch with anyone. He won't have to wake up early. Anything I can come up with to help him feel better.
Zack is finally out of the testing, we decide to go to his favorite Long Horn Steakhouse, and just chill. I tell him the news about St. Jude's and he is THRILLED!!! He tells me that he doesn't like to fly, didn't want to be away from his friends, and wants life to be as normal as possible. I am relieved! For the first time I feel like we are doing something right, mind you I KNOW we haven't done anything wrong, but as a parent you still feel some form of guilt. I call the Cancer Center and tell them we are on for the protocol. A few minutes later I get a call from Miriam calls me and tells me she heard the news. She is pleased and KNOWS that we will get the best care, I too am convinced. There comes a point where you have to trust, and if need be I can always take his records to Boston or Houston for information.
We head to Mom and Bobs. Oscar is there and we want to make sure we get a visit in with him. I surprise him on the way and pull into Best Buy. He looks are me and says his favorite word "Question Mark" with a smile. I tell him to go inside and look at the MPs players. I make an executive decision that he needs something to keep him busy if he is going to be in the Hospital for 3 - 5 days at a time. We find the perfect match, he can play games, watch movies, download his own music and go online. He immediately downloads Skype and I then realize that I can "visit" with him on my lunch breaks via the internet, so we download the same on my phone. This makes him very happy. I tell him NOT to get used to being spoiled, that is it! (Yeah right!)
We arrive at Moms and she looks sad, this has been so hard on her. She helped raise Zack ( at the shows and in the shop) until he went to kindergarten. They have an especially close bond and she hates seeing him go through this. She is worried about our choice. At my request so many people have come out with locations for us to pursue. Ultimately this is the best choice we have, given all the factors. With cancer they say it is 2/3 mental and 1/3 treatment. If Zack is not with his support team, that will affect him too much, a risk I am not willing to take. Mom explains that it takes her a couple of days to realize what is going on and she is sure she will do better soon. I want to take the pain away from her, but this is another part of life that sucks, but like the Doctor said it is treatable and curable!!!
We leave there and head home. I get home and have a melt down because of two close calls on the road, a mailbox and dear jumped out at us. ( you figure out which is true... LOL) Zack runs to the back, punches the dirt bank in the back of our house, gets his hands dirty but not broken TYG, and I call my mentor Bob (brother of course), he is the calmer in the family. Poor Frank comes out to greet us and is met with two VERY emotional people. He takes care of Zack, gives me a hug, takes my purse and leaves me to my phone therapy. After about thirty minutes, I am calm again, Zack is asking if he can go to his friends house, I send him on his way and then fill Nancy in on the days events. We hang up after about an hour and I crawl into bed knowing that it will all start over again soon, but at least tomorrow will be "normal". Zack will be with his friends ( in my car.. YIKES!!), I will go to work as will Frank. We will have a normal dinner, maybe a movie and be ready to face another day....