Not sure were to begin. About two weeks ago I received a phone call from Ellie’s nurse at the hospital. She informed me that Ellie’s counts continually keep dropping so it was time to switch treatments. She was unsure what the next step would be until the Brain Tumor board met about Ellie’s case. We set up an appointment for 22nd, (yesterday) with the Doctor. These past two weeks have been extremely stressful and worrisome for me. Ellie has been doing so well these past six months that I was not looking forward to switching. I feared the worst for her treatment plan and just not knowing really bothered me.
Since that phone call I am happy to say Ellie has started school. She is now a third grader. It’s hard to believe she was only a first grader when she was diagnosed. She has grownup so much. Her growth has been stumped by the Chemotherapy so she is the smallest third grader; she still wears size 6 clothes. She is unable to take any growth hormones as long as she is on treatment so she will just have to be my petite Ellie, good thing she is Asian. ;) Ellie is very excited that three of her really good friends were in her class this year. She also is very lucky to have two sweet teachers this year. We are looking forward to a great year at River Valley this year.
So yesterday was the big day. We went down to the hospital and it was a great day. The Chicago White Sox’s were ribbon cutting a playroom in the Oncology Day Hospital. It was really neat to get to meet the players. And I must say the meeting with the Doctor went much better than expected. Ellie’s new treatment plan can mostly be done at home. Basically it is slightly similar to her last treatment plan. The in-home nurse will come in twice a week. The nurse will come once to draw blood work and then again to give Chemotherapy. I am hoping the nurse is able to do it before school, if not we will have to see if the nurse can go to the school and do it. We will only have to go downtown once a month, unless her counts drop low. This is a year regimen and Ellie will have no down time from Chemotherapy but we all thought this is the best option at this time.
Doctor was very clear that we were not going to start the clock for the year. I don’t think Ellie will even last another 6 months on this chemotherapy before having to switch again. These Chemotherapy side effects can be low counts. We all know Ellie is an over achiever when it comes to side effects. So we might be in the same boat we were in before. There is a slight chance Ellie could loose her hair but for now she wants to rock a little pixy cut. The doctor also was clear that he wants to do everything possible to wait till she is 14 years old to do Radiation if possible. He really wants her to live life to the fullest and try to have a normal life.
Needless to say we are very pleased that Ellie is able to go to school a full day as of right now. I couldn’t be prouder of her. She is so tough and is doing so well sometimes I even forget she is going through Chemotherapy. I added some pictures of the Ellie with the sox players and her first day of school. Also the Hands project. Ellie has a her hand art work up at the new hospital. Her hand is light blue and yellow stars.
A mother with a battle ahead of her.