|Installing the IV into the port.|
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!|
|Ready for the "cocktail"|
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!!
|Time to go home, tired and ready|
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........