Here are some tips!
Be Honest..Advise for Parents!
* We need to know what CHEMO is...Explain it to us! Chemotherapy can be given in many forms, such as orally, with an IV, or by an injection....with ME I have a PORT, which makes it easier to give me chemo. I have numbing cream that I put on, before we leave for the hospital....this is so I won't feel the needle for my IV.
* The effects of chemotherapy can also be kinda yucky. We need help to understand that sometimes getting better may mean being sick for a short time.- * CALM DOWN! Us kids are perceptive and will behave in response to how you act. We are stronger than you think.
- * Don't treat everything as a big secret. We need to know what's going on....Just tell us! If you aren't honest, it makes us feel more scared.One of the things I was scared about most, was losing my hair. NOT EVERYONE having Chemo loses their hair. My mom helped me understand that everyone is different...and that we will take things as they come.
This is me, after surgery to put in my port. A port is a thing under my skin, that connects the vein that goes directly to my heart. Having a port makes it so I don't have to get an IV line put in every time. Before chemo every week, I put some numbing cream on my skin and by the time we get to the hospital, I can't feel anything!
This is what my IV bags look like. The one with yellow is the carboplatin,the other bag is just regular fluid.
Having chemo can get boring. I always take something to do.----------------------------------------------------------------
I went through 3 months of chemotherapy, and my tumor actually grew! That means all those times I went to the hospital were just wasted! :( But maybe without the chemo, the tumor would be even bigger than it is now!? I have no idea.But since the tumor grew, it was time to decide what to do. My doctor decided to change my chemo medicine....She says, sometimes, finding the right fit, takes a while...But....this new chemo makes me sick. REALLY REALLY sick! I am dizzy and sick to my stomach all the time! And worst of all...I am losing a lot of hair. Some people don't even notice though. But I do...my hairbrush is always full of hair...and sometimes, it comes out, just by touching it.Another thing that happens, is that my ANC blood count goes WAY low. So low, that I may need a blood transfusion!When my white blood cell count is low...I feel so tired. Not "normal tired"...More like, I can't keep my eyes open kind of tired.I was at camp, when my levels dropped to ONE!!! Do you know what a normal count level is? It's over 1300! My throat hurt, and I had a fever of 104.2.My parents drove to pick me up and rushed me to the ER....I got antibiotics and stuff to take my fever away. And I was there for almost 5 whole days!Now I have to have MRI's every 6 weeks....and we might have to change chemo AGAIN!But for now, we just wait...I'm okay with that! Waiting doesn't mean sitting around not doing anything...because there is LOTS to do!My mom said that MY job, is to REALLY take advantage of the days I feel good....And to hold those times close to my heart...Because it's the GOOD times, that help get you through the BAD. :)
MY PORT ACCESSED.
The CRUMMY Chemo!
It doesn't hurt going in...It just feels Cold.
My Goal is to SMILE during EVERY Chemo infusion!
