Friday, June 14, 2013

Post treatment protocol

Today was the first day of flushing of the port. This is the first time we return to the Cancer Center after completing the treatment protocol. I'm not sure what I expected, or Zack for that matter. We both had the idea that we would go in, the nurse would weigh him, measure him and take his vitals like every other time. We expected his port to be accessed and "flushed" or cleaned out. We did not expect them to take his labs and wait for the results. We were escorted to the "usual" television room and then asked to wait for the results.

We had a post treatment meeting with Anne, whom is a research nurse who works closely with patients, families, and staff. (When a child is diagnosed with cancer, Anne works with the family and the child in the hospital providing them with information that they will need over the next several years. After discharge, she will follow up with them in the outpatient clinic to ensure that their questions and needs are addressed. She works closely with staff addressing questions about the patient and family to help provide a continuum of excellent care. She most recently helped create a smooth transition for the hematology/oncology clinic from Mission Children’s Clinics to the SECU Cancer Center. She took on a leadership role and added responsibilities to make the transition as seamless as possible for staff and patients. As a research nurse, she worked with staff and physicians to prepare for a successful audit. She is also in school. Anne’s dedication and compassion for nursing is displayed everyday in her interactions with patients, families and staff.) 

Anne entered the room with two pieces of paper. She is more serious than the other nurses. She was one of the first we met with to go over protocol, possible trials that are going on around the Country and to ensure we are on target with treatments based on protocol. She sits down and begins to explain our new schedule. The shocker was that Zack will have scans every three months for the next three years, followed by every six months for the fourth year and once a year following. "This is the only way we are going to know if it returns." said Anne .... those words shocked me back into the reality of it all! Walking back into the center was already a reality check. When you are away, enjoying the day to day, you put the past year behind you and try your best to move on. Anne had "offered" for Zack to have the port removed early, to which I was not amused! I firmly pointed out that this was major surgery and IF there are signs of anything, he would have to undergo two surgeries in a matter of months. The port is not affecting his everyday life and waiting another two months is in his best interest. Though Zack was not thrilled, he had to agree with the logic. Anne went on to explain the reasoning behind his continued need for antibiotics. She said there is a special type of infection that he "could" get from the port which could lead to pneumonia. Having had enough "information", we agreed to continue with the Septra. As Anne exited the room, Julia entered with the best possible lab results. She said all of his counts are in great shape and he is free to do as he wishes. His only limitation at this moment is lifting weights, and that is due to the port. 

My plan was to go to the Red Cross and donate platelets, but once we left,  I was so tired and Zack hungry. We had a nice lunch and were on our way home again. The Red Cross has been calling me every other day asking for platelets. One of my main missions is to work with the Red Cross about getting platelet machines in our own town. It is a huge problem as it takes about five hours from the day to drive to Asheville, donate and return back to Brevard. I have spoken with a lot of people in town and those that are able to donate simply say it is too far and too much time to go to Asheville. 

When we returned home, Zack ran up the road to work on a water feature for Frank. I laid on the sofa and before I knew it, I had fallen asleep and continued to do so for three hours. I was emotionally drained. It had snuck up on me and hit me hard.  Frank and Zack both returned about the time I woke up. Zack was getting ready to head up to his friends for a swimming party. Frank ran down to the pond to fish a little with the dog and I continued to process the day.

Zack has pre registered at our local community college. His plans are to continue working with Frank until he can get a job at a local store. He would like to work there in the evenings and go to school during the day. It is a very exciting time for us all. We have been celebrating his end of treatment, celebrating his graduation,  celebrating life in general. We know that we must continue to celebrate each day. As Mom reminds me quite often, he has been cancer free since the tumor removal. THAT is what we will hold on to. To hold our breath each time we have the scans will honor this horrible disease and we refuse to give it any more power. We will know each day, that he is and will continue to remain cancer free. 


  1. Amen ...and millions of hugs :-)

  2. Thank you so much Angela!!! a zillion hugs right back!!! <3

  3. That was interesting! I have seen many people with ewing sarcoma in Los Angeles during my intern ship, They suffer a lot. Soft-tissue sarcomas (STS) are a group of cancers that begin in the tissues that support and connect the body, such as fat cells, muscle, nerves, tendons, the lining of joints, blood vessels, or lymph vessels. As a result, STS can occur almost anywhere in the body. When an STS is small, it can go unnoticed because it usually does not cause problems in the beginning. However, as an STS grows, it can interfere with the body's normal functions.