Tuesday, April 24th 2012 More Hiccups

So, Ella's fever came back, and this time it went to 101.8. the magic number is 101 for calling the doctor, so we made the call.  Even though they confirmed from Friday's clinic visit that she has the flu, they had her go in for antibiotics.  It is more of a safeguard.  The virus can drive down her ANC and make her more susceptible to bacterial infection.  The Dr. knows I am against this because the last 2 times this has happened the antibiotics caused C-Diff and a hospital stay for Ella, but it was necessary.  So, we headed down to Loyola's ER.  Steve and Josh had left to spend the day together and I couldn't get in touch with him, so Aunt Carrie met us at the ER.

Ella wearing a mask in the ER

The one thing I still do not like about our hospital is that it is a school.  So we got a resident in the ER, one that had a cold and was wearing a mask. He came in with this little notepad and started to recited back to me what the doctor told him. It think it is just that most of them just do not instill any confidence that they know what they are doing and have got it covered.  So, I became "That Mom" and told him before he could read it off his pad and asked to make sure someone with experience accessed her port. The nurse was experienced, but she had trouble accessing Ella's port. Then they tried to take it out of her arm, and failed. She fished around for about 5 minutes and nothing. I can't tell you how proud of my girl I was. She didn't cry at all.  Many thanks to Aunt Carrie who brought the Muppet Movie and it kept her completely occupied.  So, then they went to the other arm.  Ella was a trooper.  She had another nurse come in to draw the other arm and that nurse got her port access to work and got it out of her arm.  Ella's counts were still good, so her body is fighting it on it's own. She got the antibiotics and we were able to go home.

On Monday we were scheduled to go back to Clinic, but her blood cultures all came back negative for bacterial infections, so we got to stay home.  Her fever is gone for now and she is in a good mood.  Fingers crossed!

Ella today with Jesania

Thank you to everyone for all their prayers!

Blessings~Katie

Saturday April 21st, 2012

We had a little hiccup this week in Ella's treatment.  She got a low grade fever on Thursday after school.  Then she woke up around 3am with a 100.8 temp.  This meant no school for her and a trip to clinic in the am.  She was so angry about missing school.  There was a special "Camping Out" event that she was going to attend and  this meant she could not go. She started growling instead of talking and hitting things.  

Since this clinic trip was unplanned, it did not follow her normal routine.  Daddy usually puts on the cream that numbs her port, this time I did it.  Someone usually accompanies us to clinic, this time we went alone.  At least one blankie comes with, and we forgot blankie.  It was not the best way to start a clinic day.  They tested her blood and checked her counts.  They also checked her for the flu virus.  Her symptoms were headache, diarrhea, runny nose and low temp fever. Her ANC came back at 1000, which is rock star status for a cancer kid, so she got the all clear to go home.  By 5pm her doctor called and said she tested positive for the flu.

By 7am today her fever was gone.  Since she missed the "Camping Out" event at school so I put up a tent in the living room and an air mattress for Ella.  I made a huge bowl of popcorn and we watched The Parent Trap in the tent and played UNO.  She played and laughed most the day.  As long as the fever stays at bay, we should be in the clear.  Thank you to everyone for your prayers and well wishes.

Blessings~Katie

Tuesday April 3rd- Clinic

Today Ella had Clinic.
She was happy that her favorite Doc was back and she knew she would be getting an Easter Basket today.  Today Josh came to clinic with us.  I think as more time passes, and I let him know that Ella won't be going to school because she has chemo, that he thinks she is off having fun and going to Build A Bear, and not so much the getting chemo part.  So, this time he asked if he could come.  He was actually really good about being there for her, he colored princess pages with her and snuggled with her in her chemo chair.  He also asked Carrie a lot of questions and hid his eyes when it was time for her port to be accessed.  I think she wanted him to see how brave she is because she barely flinched and didn't cry at all when they inserted the needle.  She was very brave.  Her counts were good, but her temperature was a bit elevated at 99.3. You wouldn't know that now because she is outside as I am typing yelling "lala, lalala" over and over again while running around the yard.

At clinic they had a few "No More Chemo" posters out that the nurses and Doc's were signing in preparation for some kids going off chemo.  It made me happy for the kids, but also because we are getting close to the end of this journey.  I think I feel happy, but also pretty nervous.  I don't know that I will ever feel like she is "safe" from it. I wonder what our new "normal" will be like and how we will all handle it.  I kept her home from school on Monday because she was shaking and said she felt to "Wobbly" to walk.  But, after 2 hours she was fine. I don't know if I will ever be able to look at a bruise or feel her head and not have my mind go to cancer, and honestly- that sucks. I know I should give up that fear to God, and let him worry about such things, but it is really hard to do.

Ella is already counting down the days till her birthday.  She is requesting a Barbie Fashion Show Birthday with nails, makeup and hair.  I am so excited to celebrate with her.

Blessings~Katie