Tuesday, July 17, 2012

Take the rugs away from the Doctors

AGAIN the rug is pulled from under us! How many times is this shit going to happen? Frank, Zack and I go to meet with the Doctors at Mission regarding the Protocol Trial. We are introduced to ONE doctor and ONE nurse. He TELLS us that we are going to do a CT scan because "something" is showing in the lymph nodes in the pelvic area. He just wants to make sure that everything is gone? While doing the CT scan, they will do a bone scan as well. Um, excuse me? We were told that it wasn't in any of the organs, that everything was gone and now this?  He then proceeds to tell us that this will happen tomorrow, and the surgery (yes another surgery) will happen on Thursday to install the port for the chemotherapy and while they are in there doing that they will do a bone marrow extraction just in case they need this later on, or was it test the bone marrow. Oh yes, and Zack won't be returning to school this year because his immune system won't be strong enough to fight off diseases that are lurking around the schools, but he can do it all from home including his Senior project. He will be in the hospital for 3 -5 days for the treatment, but there are lots of game systems he can play and a TV and people there to make sure he is entertained. Oh and you are not eligible for the protocol because Zack already had surgery to remove the tumor, but you would have had to pay for that anyway, it wasn't at no cost. He leaves to make all the appointments, the nurse returns with a doll and proceeds to show us how the port is going to be installed.

I text Nick (my nephew and recent graduate as a  DO) and he calls me, just in the "nick" of time... I run out into the hall, I can't breathe, I can't collect myself, he asks if I'm there, I start to cry, his calming voice says It's okay Aunt Sabrina, it's okay. I don't understand? why are they telling us all of this, why not in the trial, why not realize that they just told my son, a young healthy young man that he can't play football, he can't go to school with his friends, he can't go to school in the afternoon to learn automotive (his true love). Do they not have feelings? Do they not realize that all he wants is to live life? He explains calmly why they are doing the tests, it all makes sense when he explains it, but for the life of me I can't remember a word of it. I am calmer, OK, we can do this, he is still in great shape, it still hasn't gone anywhere major, if anywhere at all, they just need to make sure, this could just be fluids... I think.. It's so hard to get excited, they keep pulling the rugs from under us. As I walk back into the room, I see a mother, her young daughter is in one of the treatment chairs, we make eye contact, she sees me wipe away my tears and looks at me with compassion. She was in my shoes not too long ago, she knows what I'm feeling, she is telling me to hang in there with her eyes. OK we can do this!!

I step back into the room and the nurse has finished showing Zack the procedure for the port. The nurse shows me and I am numb. They want to stick THAT inside my son? A boy that has had one surgery his entire life and that was to remove this fucking tumor ( I told you that word will show up).  Why aren't THEY freaking out about this? Oh... They do this all the time, they are used to this, one day, I guess I too be used to this, Frank will be used to this, this will become a part of Zack's life for the next year, he will be used to the chemo, the needles, the tests..... it will be a part of all our lives. Everyone connected to us, we are all on this journey together. . We feel so much love from our friends all around the world. Doors are opening for us all around, and we must trust that the right treatment will be there for Zack.

We tell the Doctor that we will look into a second opinion as well, but will continue with the CT and bone scan tomorrow. We don't cancel the surgery for Thursday, one day at a time. We leave and decided to grab dinner at a local restaurant. From the car Frank calls a client and friend of ours. She says St. Judes... go nowhere else. They took care of her son and her. They can do the protocol, and they cover all expenses.  Frank thanks her and snaps the cell phone closed, announces that we are going to St. Judes in Memphis. Zack and I freak out!!!  We can't move there for a year, what about my friends Dad? My life is here Dad!!! I have to work too so we can pay the bills Frank, are you crazy? have you lost your mind? He steps out of the car to breathe ( I find out later that we scared the Hell out of him, he was trying to help and we are yelling at him in fear), this is all new to us all, we ask questions and get more questions, tests, fears... We are all doing the best we can. He gets back in the car, we can't eat, who can think of food at this time, not even me. We drive home, Zack falls asleep in the backseat, he is snoring he is so exhausted. I call St. Judes and ask what we need to do, she needs a referral from his doctor. I call his doctor, he has gone for the day, the nurse assures me he will call in the morning. I grab Franks hand, tell him we are a team and must be strong together.

We call our dear friend Lee ( family friend since before I was born). Auntie Lee, as I like to call her, is a tough, tell it like it is personality. My kind of people!!! Lee can help us, she knows people, her daughter lives in Boston and knows the hospital there, maybe she knows about St. Judes too.Lee's calming voice answers the phone. I tell her what all has happened, she is on speaker so Frank can hear too. She doesn't know much about them, but said that there is no reason to rush and make this decision in two days.  If this was so urgent why then sent me on vacation for a week?  I'm sure you have a couple more days to figure out the next step, contact St. Judes and see if this is an option. Go home, do research online, find out all you can on them. Frank gives a thumbs up. I am calmer, we will go home and research.

We decide to continue with the CT, but will hold off until we hear from St. Judes about the port insertion. No need to do that if St. Judes accepts us. I make my usual phone calls to Nancy, Mom and Bob. I had asked Nick if he could call his mother (my sister Rhonda) because he explained it all so well to me that he could do that for her. Nancy comes over to give her love and support. We feel so much better and calmer about things now. Somehow talking it out, things are clearer. Steve knows of a pilot that fly's people to hospitals at no charge, he leaves the man a message asking for his help if we have an appointment in Memphis. Mom is sending me tons of research she and her friend Joan have done. Bobby offers me a soft comforting voice of reason and calm if I need him, anytime.

We are exhausted, Frank and Zack manage to eat dinner we picked up at BiLo's on the way home, we have no clean clothes so I start a load of laundry. All I can do is go online, read the research, I find a referral page on St. Judes website where the parents can fill in all the information, I do so and send it immediately, at least that way the information is there before the doctor can call!! I did something!! I helped!! I had some control!!!  I sit down to write my journey in my blog. I received a lot of messages, emails and texts with people asking for details. I am too exhausted to call them all,  too exhausted to eat, I simply write back..... for updates please read my blog, love you!! I don't have any more energy than that.

I visualize us in a year. Zack cancer free and cured!! Watching him cross the stage with all of his friends, and planning his future at Nashville Auto and Diesel school.  I pour myself and glass of milk, goodnight everyone. Enjoy the little things, the little triumphs and miracles that have happened and continue to happen.

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