Wow what a day we have had. Today was Chemo Day.
Our day started off nice and early at 5:30am. Ellie was actually woke up in a pretty good mood. She did cry a little about going downtown for Chemo today. I think the hardest thing was that she told me “I wish I would of never
told you I had headaches the first time” I wanted to clarify with her that by telling me they were able to get the
bump out of her head and then she didn’t have to go to heaven. I told her this way she got to stay with us.
It took allot of on my part to get that out because we still don’t know the end result of all this. As I said today “I feel like I am on a roller coaster and I’m sick to my stomach, but the roller coaster won’t stop for another 70 plus weeks.
As most of you know, Ellie had an MRI last Monday.
I did not really push for the results as I felt it would be a calmer and easier to speak to the doctor and see the scans myself this Wednesday. When we arrived at Children’s this
morning, Ellie was awesome. She took her port access like a champ. I was so happy grinning from ear to ear because she just had a few tears (I did have to bribe her with a movie, but it’s all worth it, as Dr. Goldman told me today keep it up). They began the hydration while we waited for the blood counts to come back.
During our waiting time we did see Sandy (Ellie’s Nurse), I told her of the bruising on Ellie’s legs, the headaches she has been having,& memory/learning problems that have arouse this summer. Tell she said the bruising could be from low platelets and we just had to wait for the blood work. But as far as the memory and headaches that would have to be addressed. So Dr. Goldman came in and said that Ellie’s scans looked stable. They are showing an enhancement in a portion of the tumor, his analogy which made sense to me (It's like a Bagel with a raisin in it and the Bagel has remained the same but the raisin has grown a
little). He did not seem concerned until I told him about the headaches/memory/learning difficulties. So he said wait a minute while I go look at the scans again. This was a long minute, well for me at least.
During this time we found out that Ellie could not receive Chemo today because her Platelets are half what they should be. They are not doing a blood transfusion yet. First they are waiting a week to see if they come up. I have to watch her very carefully for any type of bleeding in the mouth, stool, or certain type of bruising. At this point my heart just sank. I have never put it all together but we have 60 weeks of treatments (this doesn’t include the two weeks between every four weeks) and Ellie has missed two so
far. They said there probably will be many to come. Needless to say in my head I kept on saying ok a few months past a year and we will be done. Looking at the numbers today I realized Ellie will be in Chemo for two years (AT LEAST). We were supposed to have treatment #18 today.
Well Dr. Goldman came back and said I need you to wait
Dr. Dipatri the Neurosurgeon wants to see Ellie. During all this commotion I left Ellie in the Oncology play room. I was
called into a room to see the scans and totally forgot to tell Ellie were I was going. She came out of the play room and looked around for me and did not see me. I was walking down the hall way and I saw a very nervous little girl;
unfortunately she did not see me and went in the corner to cry. I felt horrible and just kept on apologizing. She had been such a good girl today and I do something like this to screw it up.
Well then Dr. Dipatri wanted to see her. He started doing all the normal Neurological testing. You know look here,
touch my finger then touch your nose, and so on. Ellie would not cooperate what so ever. She would just stare with a straight face at the wall. Dr. Dipatri and Dr. Goldman have decided to wait for Ellie’s three weeks Neuro
Physic Testing before making a decision on the next steps.
After he left the room Ellie began to cry and tell me she was afraid of Dr. Dipatri. I then realized she was afraid because this is who took her tumor out and she associates him with
something bad. Once again felt horrible, I couldn’t even hold the tears back at this point. I just wanted to leave, I had enough emotions to last me at least a week. I left without a final decision weather Ellie was to come back for Chemo last week or wait till mid to end of Sept. for the Neuropsychological tests. Sandy told me she would get a hold of me tonight.
At this point my mom and I decided to do something fun with Ellie. We asked her what she wanted to do, the zoo, lunch, anything she wanted. She wanted to go eat at Ed Debevics. We got there and Ellie just adored the waiter. He was nasty but made her laugh. He called her a brat and
she started to laugh. My mom and I laughed too. It was defiantly great medicine for the day we have been having.
Tonight I got word that we will continue only three weeks of Chemo, starting next week as long as her counts are up.
If her counts do not come up then we will do another blood
transfusion. After the next three weeks then we have two weeks of Neuropsychological testing and then the tumor
board will reevaluate Ellie’s Case and deter main if we will change her protocol or stay on the same path. So basically almost two months before we know anything else. I really appreciate that no matter how busy the Dr’s were today they made lots of time to spend with our family. I also appreciate my mom for flying back from a trip and getting only two hours of sleep but being there to support Ellie and I today.
I am blessed with Awesome Doctors, Nurses and the Best family to help Ellie and I pull through this.
Tomorrow is Ellie’s Meet and Greet at school. Ellie is so excited that her friends Daliegh and Erin are in her class this year. We are also thrilled with her teacher. Oakwood School has done a wonderful job working with us. Thank you so much. I know Ellie keeps on asking
about her tutor, Mrs. Weiranga. I hope they were able to make it work so she could continue to be her tutor. I guess we will get more answers and a plan tomorrow. For now I need to get some rest after a very long day. We have a busy week but I will try to blog at least once or twice over
the next few days. Thanks for everyone’s love and support.
Please remember that Saturday is the Little Hands Big Hearts Summer Fest at Lewis University in Romeoville, IL.
Ellie is the honored guest and I hope that everyone can make it out. They will have entertainment for all ages. And for some I know it’s important to that they have a beer tent. Games for kids. The event kicks off at 12 noon Ellie will be leading the parade. They will have kid’s games and lots of fun. Its only $10.00 to get in and children are free with an adult entry. Please come out and have a goodtime
it’s for charity. Hope to see you there.
A mother with a battle ahead of her.