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Wednesday, July 27, 2011

Wednesday July 27th, 2011

 We were able to take a one week vacation over the 4th of July so we took the kids up to Door County to go camping. It was really nice to spend time alone just hanging out and doing fun things. The whole time we were gone, the fact that Ella has cancer only came up one time. It was a little challenging to give Ella her meds, and when we realized we forgot to bring the strawberry syrup we use to flavor her meds we did get slightly panicked. Luckily, my smart husband came up with the idea to crush Tic-Tacs to sweeten it up. It totally worked and it is her new favorite!

Ella had clinic yesterday. Josh, Grandma, and Grandpa all got to go to clinic with us. It was nice for Ella to have so many distractions on a clinic day. Her counts were better than last month and I was so happy when they said her liver function went slightly down and not up! It is still elevated, but I was thanking God when the doctor told me. I know as a doctor it must be hard to be in this field, but I can tell you how grateful I am for a doctor that takes the time to talk to you and LISTEN to what you are saying. thank you Dr. Salvida!

I had to take Ella in to get an eye exam for Kindergarten last week. When I made the appointment I told them that she has cancer, just in case it changed anything about the way the doctor examined her. When I got there, I spent a good 10 minutes filling out the forms listing her medications and condition.  The doctor walked into the room, appearing to be reading the paperwork that I so meticulously filled out and said “ So, I see she is on no medications and is in perfect health!”. To quote Friends “Seriously!”. 

Ella also began going to school 3 days a week and she started cheer leading 2 times a week. We are working on trying to help her to be more social with kids her age. This past year she has spent a lot of time with adults and missed some of those group social skills that are learned at this age. So far she is not happy about the changes, but we are trying to encourage her to stick with it and make friends. This week she had Summer Adventure at church She made this craft, and I just wanted to share. She drew a picture of herself on the stage. I love that she drew herself smiling.

Her 1 year anniversary for being diagnosed is August 26th. I am so grateful that she has made it this far, but this day feels like it is looming to me. I am not looking forward to it at all.


Thursday, July 14, 2011

Thursday July 14th, 2011

I know it is not a clinic day, but I just wanted to vent. Ella did have a doctors appointment today, for Kindergarten.
First, this appointment was hard because the last time we were in this office, the doctor handed me a script for Ella to be tested to "Rule out Leukemia".  This was the first time anyone had actually said what was being tip-toed around for almost 3 weeks of testing. This visit brought up a lot of feelings. Ella's one year anniversary of being diagnosed is next month. I am not sure if I feel like celebrating or locking myself in a room and crying. If I do lock myself in a room, good chance I'll either be holding on to Ella, drinking a glass of wine, or just crying and waiting for the day to pass.

We had the very first appointment of the day. I did this to ensure that we would not be sitting in a very full waiting room that  is full of sick kids. Somehow with us having the first appointment and knowing the doctor walked in right before us, we still waiting over 25 minutes for him to come into the room.  Now, I have friends that are doctors and I spend a good deal of time around the medical field, but why some doctors feel there time is worth more than their patients is a mystery to me. I hoped it was something pressing that was keeping him, but I could hear his conversation on the other side of the door. Luckily, Ella and I are use to making time pass in small rooms. This visit did make me more grateful for her team at Loyola.

We went through the usual, stick out your tongue, let me look into your eyes, press on your belly.  Considering her drug regimen for the past year -she grew and was in the 75% for height, eyes look good, weight is okay too. The thing that was frustrating was that I had to fill out a standard TB (Tuberculosis) questionnaire.  One of the questions was is your child around someone who is going through chemo. My first thought was to Ella's friends. I had no idea that her being in chemo could in anyway affect their health.  Second, I didn't realize that chemo would make her more susceptible to TB(specifically). So I answered yes. The doctor then informed me that Ella would need a TB test and that he still wanted to give her the polio vaccine. Now, before Ella was diagnosed, I took every word my doctors said to heart. I questioned nothing, always assuming that they had the education and the knowledge that I did not. Now, I question, not only to make sure I understand, but to make sure that she stays safe. I told him that I was uncomfortable with this because her oncologist said "No Vaccines". He said that was only "Live" vaccines.  I told him that I still was not comfortable with it because if her ANC was low or her counts were off, the TB test wouldn't heal right anyway. Finally he agreed to call her Oncologist and verify "to make me feel better".  I love Ella's team. They answered the call right away, and guess what? No vaccines for Ella. I guess I was just frustrated that he was more concerned with what she "might" get, than what she DOES have.

On a brighter note, the Charles Tillman Foundation is holding a lunch in Chicago this Sunday for mothers of critically ill children(, and I have been invited. I am looking forward to meeting other mom's who are walking down this path too. Maybe they can help me mentally get through Ella's one year anniversary.