Tuesday, July 31, 2012

Day One... COMPLETE!!!

Installing the IV into the port.
 We wake up at 6:30 am, which for Frank and I is a usual work day. Zack on the other hand is sleepy (like all teenagers). He gets up, gets dressed and immediately picks up the small tube of numbing agent the nurses gave us,( he is supposed to put it on one hour before the iv, so that he doesn't feel the needle entering his skin)  he puts a large amount (too much) on his port entry and then realizes he used too much, it is oozing out of the bandage. He then comes in asking for my help. He wants to do a lot of this on his own, he remembers when, where and what about the treatment. It's amazing how he has taken a very active roll in his entire healing. I makes it easier on us as well, three minds working as one. We re do the cream, cover it up  and he drinks two more (already downed two) glasses of water. ( he is supposed to stay hydrated during the entire treatment to flush out the meds and dead cells). We are ready to head out the door. Frank got confused thinking he was only supposed to go Wednesday and didn't make arrangements with his workers. Zack tells him "we got it covered", " I don't want a big fuss Dad", I pout on the inside... I need him there, but I must be strong! If my son is strong, I must be too. So we are off for today's adventure.

Zack and I arrive at 8 am at the Cancer Center for his first day of Chemotherapy. It is an hour drive from our home, but the drive was smooth and though anxious, our spirits were ready to get the show on the road.
We are greeted by the staff, it is early for them as well, they are opening the doors, turning on the lights and preparing for a full day. All of the rooms are going to be full.  "Our" new routine is going to be weight, blood pressure, temperature. They will monitor this every visit to monitor weight and height to measure how much medicine to give each time. As he looses weight, he will require less medicine. They will also take his blood to test the platelettes, red and white blood cells in the event he needs a blood transfusion or platelettes. 

Zack's nurse Melanie, Absolute sweetheart!
We meet Melanie. A nurse that specializes ( for 10 years) in administering Chemotherapy treatment. We find out later that she also teaches other nurses, so we know we have the best! She was off for a week and thought he was there for his biopsy, asking Zack why he was drinking. We look at each other like "is she crazy?" We tell her NO MORE TESTS!!! We are here to start the treatment. She is embarrassed and realizes that she was listening to the nurses who were talking about the biopsy and hadn't read the chart yet. She immediately goes outside, reads the chart and comes in prepared to install the IV into the port.  She cleans the area and warns Zack of the strong smell of the cleaning solution on the "stick", he leans over his shoulder and smells it, "YUCK" this is horrible!! I smell it, and it reminds me of my cleaning solution for my jewelry so it doesn't bother me. Once the area is cleaned Melanie tries to insert a 3/4 inch needle and realizes that it is not long enough, the port is back further than it felt. She returns with a 1 inch needle and it is perfect. The numbing cream worked very well. Zack just felt pressure, not pain. And NO... I did not faint at the sign of blood. 

Ready for the "cocktail"
 Once the IV is in we are escorted to a hospital style room with large windows overlooking the parking deck across the street and parking lot where we parked my car. It's a rainy day, a bit gloomy, but somehow not so bad with the large windows on two separate walls. There is a hospital bed fit for a child (we are in the pediatric section), Zacks legs are touching the end of the bed, but he is still thrilled to see it as he is ready to go back to sleep. There is a  TV with basic Directv and recliner. The monitors are turned on and ready to start beeping when the IV bags are emptied. He starts off with two bags of fluids to continue with the hydration,  two hours later the bags are empty and  he is given an anti nausea medicine , also through the IV. Once that bag is empty Melanie enters in a blue suit, blue gloves, safety glasses and carries two sealed bags containing syringes with the "cocktail". Zack and I look at each other with weird expressions and ask if we too should have on Hazmat (sp) suits. Melanie starts to laugh and explains that "HE" needs the treatment, but "SHE" does not and if it spills on her it could soak into her skin and cause third severe burns. OK, THAT took the laughter away!! This stuff is serious!! But then again, we really did know that. Being the way we are, we still must laugh and poke fun or we would cry. With the first syringe he tastes metal in his mouth, we were told this would happen. He explains how he can feel it enter into his system and how weird it all feels.

Once he is all set up, Doctor Scotthorn comes in to check up on everything. The more I get to know him the more I like him. Our first encounter a few weeks ago was not as good, he had to deliver the news that chemotherapy was needed,  he was also the one that gave us the good news of NO MORE CANCER!! and did the bone marrow biopsy, so he has won my heart! He said that Zack's case is close to home as he has a 17 year old boy as well. I asked if he has any other Ewing sarcoma cases, and he said yes, two. One is very similar to Zack's but the growth was in the shoulder, everything was removed (like our case by a general surgeon that didn't know it was cancer). He has just completed his year and is doing very well. The other was a little more serious, and younger, but is also doing very well.  I don't know why we didn't ask him that before.

Once he leaves, in comes Karen, one of the case workers. She too is a sweetheart and very eager to help us with anything and everything. The information is coming so fast I hardly know how to absorb it. Zack is already in and out of sleep, so he is resting. Karen starts telling me about websites where I can blog, I stop her and say "maybe it's easier if I tell you where we are at. I pull up my laptop ( I must admit, quite proudly) and show her my blog, pictures and then pull out all the documents that I filled out for financial aide and Zack's school papers that must be completed by her and signed by the Doctor. YUP!! I impressed her (hey I need to have "some" control you know!!). We discuss Zack's school and how to get him all the cooperation from school to have his needs met. We discuss "make a wish" foundation, she is eager for him to fill out the papers to get that set up. He tells her he went online and did that, but she say he may have to do it again but locally as they "loose" papers at National. I try again to convince him that meeting Vin Diesel is his REAL wish.. we all laugh as he explains that this is MY wish!! We go over papers for a local fund that helps families with gas and food while in the center and hospital. A year of going 45 miles one way, three times a week... . I decide that there are options available to help people, this is what these fund raisers are about and having contributed for many years to many organizations, we are ready, willing and able to accept anything that comes our way.  My pride is gone when it comes to my son and what is best for him. As we are talking and looking over papers I look up and there is Frank! My heart is full of joy!  It rained at home and he couldn't work. He decided to come to see how Zack was doing. Just the short amount of time he was there gave me the strength to carry on for the rest of the day. I am known for "not needing anyone" and once you teach someone that, it's hard to go back and say.. okay "maybe" I really DO need you!!

It is now 1:30 pm and Zack and I haven't had lunch. He starts to feel bad and the nurse returns with a syringe of Benedryl. He immediately feels it enter his body and starts to feel spacey. I break from the meeting with Karen and excuse myself to leave and get lunch. She runs to her office and brings back two $10.00 gift certificates for Atlanta Bread Company, which is just down the road. Zack goes online and  trying to get the computer to stop moving (remember he's spacey) figures out what he wants to eat ( a good sign that he is ready to do so). As I leave, Zack is already falling into a deep sleep. On my way to the restaurant I return calls from messages that were left earlier in the day. While waiting for lunch to be prepared, I see a sign to text ATL to a certain number, I do so ( in need of some fun) and receive a text for a free muffin, I show the cashier and she wraps up a double chocolate muffin at no extra charge. (yes, Zack was feeling well enough to devour that as well).

I return 45 minutes later and he wakes enough to eat lunch, the muffin and then falls back asleep. I sit back, make my little corner of the world "home" and eat my lunch while continuing my "Greys Anatomy" series.. Off and on during the day, we hear young children crying. There are three or four receiving treatment and none of them are over 7 years old. How do their parents explain this all to them? I am suddenly relieved that Zack understands all that he does. I can't imagine going through this if he were younger. It is hard to hear their little cries, I am sad for them and their families. 

The doctor comes in to check on Zack around 3:30 and see's what I'm watching on my laptop. We laugh as he says "TV!!!.. I only made it through 30 minutes of that show". What they show in one hour only happens every five years in the real world.  I tell him my friends can't believe I'm watching this while in the hospital, but hey.. it's drama..  The Doctor tells us we are wrapping up for the day, one more bag of fluids and we can head home.

Karen returns with more papers, some filled out forms and instructions for us on what we need to bring the next morning. We are scheduled to return (Frank will bring Zack tomorrow) at 10:30 am for a short "burst" of chemo and a fluid wash. It should be a half day. Zack is given two syringes to take home with instruction on how to take the solution. He is to get a Mountain Dew (the liquid doesn't taste as bad in that) and put the solution into the drink. He is to drink it and if it stays down for an hour and a half he is good to go, if not, he must do it all over again. This solution really cleans out the bladder, which is very important as the bladder can hold the chemicals and dead cells which need to be released from his system. We are also told that he must return on Thursday for a shot which Zack decides he can do with one of his friends.

Time to go home, tired and ready
The drive home is quiet. Zack is asleep, which is a blessing as he was not feeling well when we left. I am exhausted, not from the day in general, but from all the information presented to me. I feel so well taken care of though. There is so much help out there, I wouldn't even begin to know where to start, we are being guided every step of the way.

We call Frank and decide we are all tired and order from a local restaurant. I pick it up as it's on the way home. We eat dinner and it is time for Zack to drink the concoction he brought home. Here is the final test of the day. The drink is horrible, it smells, it tastes nasty. He knows he has to drink it and keep it down for 1 1/2 hours. We are watching the clock. He has made it 1/2 an hour, now 1 hour, then I announce with great pride.. "you made it!!! It is 10 pm and you are done for the day!! he sits beside me and watches as I type the blog.  He  knows that he can relax and falls asleep, the only problem? He is asleep on OUR BED!!!

To be continued........

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