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Friday, December 30, 2011

Friday December 30th 2011- Christmas

We celebrated Christmas this morning. I tried, but it just wasn't the same. It wasn't the gifts, it was that I hard a hard time feeling the gratefulness and joy that I usually feel this time of year.  Ella is at that perfect Christmas age. She was so excited she asked to sleep in front of the Christmas tree so she could see Santa. She wanted to know if she was going to be able to hold the candle at church this year. She was excited. I had a hard time feeling joyful this morning, because this morning it was just about the gifts. I felt like the main reason for the season was gone from me. we didn't take any pictures.  I really just wanted to turn the tree off and get back into bed, alas the day was full of "Things" that had to be done.

One of those things was taking the van for it's emissions test.  The emissions test is due on January 31st, but the license plate renewal is due n December 31st. I missed the note in big BOLD black letters on the emissions test that said they would not renew my plates until the van passed the test. So, in the mail when I got home I found my check for the license plate renewal un-cashed with a letter from the state telling me I need to learn how to read. So I was off to get the van tested and send in the plate renewal, again. As soon as the van passed I went to the post office to wait in line and get the renewal back in the mail. I figure I won't really be driving much for the next week so I can wait for snail mail to get my plate renewal sticker to the right office. We live in a small town. The kind that has 1 fire department, 1 post office and 2 bars. The post office is a small town post office that is busier on most days than it can handle. Today as I was next in line, the lady in front of me realized she was short $.40 to pick up her package. She asked the counter clerk to hang on as she went to her car to get the money, I told her not to worry about it, I had the $.40. She thanked me and went on her way.  When I got up to the counter the clerk mentioned that it was a good thing she knew me. I said I didn't know her and she took my envelope and mailed it for free. She re-stamped the date since I had a stamp on it from the 1st time and resent my renewal. I thanked her and went to my van. I could not help but cry.  (Not just cry, but sob like a baby.  You could say I am a little tired and emotional right now.) Her one small act of kindness made me realize in an overwhelming manner that the joy of Christmas- the real joy is an everyday thing. Not just once a year.

Ella did really well today. She was like a completely different child today. She wasn't walking hunched over and she smiled and played with Jesania and her brother. No fevers, her appetite was better and she was happy to play with all her new toys.  My favorite all time gift? My husband and children. They are a gift that I can treasure everyday. I really hope I can remember that the next time my hubby walks by a full garbage can, Josh takes 30 minutes to brush his teeth and Ella has a complete meltdown.

Happy New Year Everyone. Enjoy your gifts.


Thursday, December 29, 2011

Thursday December 29th, 2011- Home!

Yea, my girl is home!

It didn't look that way this morning. One resident came in and told us that her X-Rays from yesterday came back with no new pneumonia (It took 19hours for them to get the results- so frustrating!!!!!). Then about 20 minutes later another resident came in and said that she had new pneumonia in both the right and left lungs. So we waited until 4pm for the Infectious Disease doctor to say she wanted to take another set of X-Rays. Then at 6pm her normal doctor said nothing new so she was release! Steve and I had already switched shifts for the night so he called me to let me know they were on their way, and I cried like a baby. She is still on chemo hold and we go back next Wednesday as long as nothing new springs up between now and then.
So now we will celebrate Christmas (insert big smiley face here!).

Thank you to everyone for all your prayers and notes. I can not wait for October 28, 2012!


Wednesday, December 28, 2011

Wednesday December 28th, 2011

Something about a sleeping child just makes me smile.

Ella has been inpatient for 5 days now. Today she was fever and diarrhea free...YEA! They took additional X-Rays of her chest to check on the pneumonia, and she did not have any reactions to the IVIg infusion. So, we are really hoping that we will be able to come home tomorrow.


Tuesday, December 27, 2011

Tuesday December 27th

Day four at Loyola.
Ella's fever FINALLY BROKE around 6am this morning. It stayed gone all day without more Tylenol or Ibuprofen.  Her Aunt Carrie brought her bagels from Panera, but we still can't get her to eat much. She has been drinking some protein shakes, and a small amount of cantaloupe and grapes. Her ANC was up to 700 which is pretty good, but they tested her antibodies and they are at 250. The ideal is 500. So they are giving her IVIG in her IV to boost that. The side effects of this drug are low blood pressure, vomiting, diarrhea, and headaches. They will have to monitor her every hour tonight to make sure her blood pressure doesn't go too low.  There is also a viral pneumonia in her lungs.  She will be here until she starts eating and we get the diarrhea under control. She is also on chemo hold still until the doctors feel her counts and body are ready to start up again.
Ella's Hospital Door
This is what the door to Ella's room looks like. So whenever a doctor or a nurse comes in, they need to put on a mask, gloves and gown. Today, I was really frustrated with one of Ella;s doctors. They stood at the door to talk to me while I was on the other side of the room with Ella, because they did not want to "gown up" as they put it.  I know they are busy, but this doctor spent more time in the hallway talking to the residents than to me. It was very frustrating. I know everyone has their gifts. I can tell you how much I appreciate the doctors and nurses that care for Ella in body and spirit. Ella knows who those people are too. She warms up to them so much quicker that the ones that want to treat her body and leave the room.  Maybe my expectations are too high? Really, they do not get evaluated based on how happy their patients are, just how healthy they are.  I am grateful for the ones who have the gift and ability to treat the entire person.
Ella and her Christmas puppy.
Thanks for keeping up with us.

Sunday, December 25, 2011

Christmas 2011

Merry Christmas.
Ella woke up with a fever of 104 on Christmas Eve, so we where admitted to Loyola around 9am.  I woke up Josh to let him know that Ella had to go to the hospital. He asked me if she had to be there for Christmas, and when I told him yes he began crying. He went downstairs and did his best to make her laugh while we were packing up her bags.
They ran blood work and took a chest X-Ray. Her weight is down about a pound from last week at clinic and her ANC is still about 580. Her fever ranged from 102-104 all day long. Even when they got her on Tylenol, her fever never got under control. Around 6pm last night they told us that they were able to verify that she has C-Diff and 2 virus'. The C-Diff she got the last time they gave her 2 rounds of heavy duty antibiotics, just like this. This time she also has virus' that are keeping the fever from going anywhere.
The hospital staff was really great about trying to make Christmas special for her. We wrote a letter to Santa and left cookies with milk for him last night.
We tracked him on our computer through the night. She had to wake up ever 4 hours for Tylenol and every 6 for antibiotics for the C-Diff, then another 4 hours to check her vitals and temperature. Unfortunately these times did not join up at all, so she was up about every 2 hours. Around midnight I told her all I wanted for Christmas was for her fever to go away. She told me to leave a note for Santa, so I wrote one and sat it next to hers. Sometime between 2 and 4 am Santa left packages for Ella and a few for Josh in her room. She woke up around 4am and couldn't fall back to sleep. She saw the packages, but she felt so icky that she didn't even get excited about them.
Steve, Josh and Aunt Carrie came up to the hospital around 8:30am and we opened gifts and ate breakfast together. Every year we take a funny face picture for Christmas. here is our picture for this year:

Her fever still isn't under control. It was back to 104 at 6pm tonight. they just switched her meds again to try to get it down. She will not be coming home until her fever breaks, because they are worried about dehydration. As long as her ANC stays about 500 she should be able to recover from the virus'.

I'm torn between being grateful and grumpy. On one hand I am grateful that we were all together and that Ella is here for me to even worry about. I know other parents that would be happy to have their child back for Christmas. I am grateful for friends and family who have reached out to support our family. I am grateful for the hospital staff that is caring for my baby. I am grumpy that our family could not spend Christmas together. Half of my family and my heart are still up at the hospital right now. I am mad that cancer took away the joy of going to church and spending Christmas day together at home in out PJ's. I am mad that the gifts are still under the tree and that I left Ella crying at the hospital today.

I will update as soon as something changes. Merry Christmas everyone.

Friday, December 23, 2011

Friday December 23, 2011

Ella 365days

Ella's fever is back to 101.5. The Doctors are working with us to monitor it at home to try to keep her out of the hospital for Christmas. If it starts trending up we might be sent to "The Big House".

Thursday, December 22, 2011

Thursday, December 22nd

Ella still has a fever. She has been battling a low grade temp for a week, but yesterday we made the call and took her to clinic. They ended up x-raying her chest and found some residue in her lungs. Her counts came back at about 600, which is almost too low for her body to fight, so they gave her a dose of antibiotics and are running cultures to see if it is bacterial or viral. She woke up this morning with a fever and Steve and Ella are back at clinic for a 2nd dose of antibiotics.  Right now we are praying her ANC is not under 500 today, otherwise she has to stay at the hospital. That would mean a possible Christmas at Loyola.  To top it off, Josh woke up not feeling well this morning so not we have to keep them apart until we know for sure Josh is healthy.

Thank you to my prayer warriors!

UPDATE:  Ella's ANC is 580, so she got another dose of antibiotics, and a prescription for antibiotics and she was able to COME HOME!!!!! YEA!!! As long as we can keep the fevers at bay, we will be good.  They put her on Chemo hold for now and she is scheduled to be back in clinic next Tuesday as long as she doesn't get a fever before then.
Now, here is hoping that this is bacterial and the antibiotics will help. I will keep everyone posted.


Sunday, December 18, 2011

December 18th, 2011-ER, Clinic and stuff.

Sorry for the late post. This has been a long week!
Ella and Adorable Bunny

I caught a cold last week, which means Ella ended up catching a cold. I have been so worried about her catching something from school and when she does get sick, it's from me. Ahhhh!  Ella spiked a fever of 102.2 last Sunday, so off to the ER at Loyola she went with daddy. Her white counts came back good- which means she has the ability to fight the cold, so they gave her a heavy does of Antibiotics and let her come home.  I can't tell you how grateful I am that her counts were good! Josh saw me crying when Ella and Steve left for the hospital. He asked me if I was scared. I told him yes, because I never know what is going on inside her body, but I have to trust that God will keep her safe. That night he cried when he was praying for Ella before bed. He prayed for her to be healthy and for the cancer to go away. He really wanted to stay up until they got home from the hospital, but since we didn't know how long she was going to be, he fell asleep.
We went back to clinic the next day for a second round of antibiotics and since we were there, they also gave us her chemo 1 day early to save her from being accessed again and having to come back for another clinic visit.  She still isn't 100%, but she is definitely better.  Thank you to my Facebook friends for praying for Ella this past week! And Thank you to nurse Theresa who advocated for us to get chemo and not have to come back!

Ella missed school all week. She was pretty bummed that she had to miss the Christmas Party at school. When I told her she couldn't go, she said "momma, cancer is stinky!" I know baby, I know. I hate when she has to miss part of being a normal 5 year old because of cancer. It pisses me off! Then she acted out how she is kicking cancers butt. That part was endearing. I told her to kick it good, and she said "I am momma!".

Charles Tillman from the Chicago Bears has a foundation that supports terminally ill children. He came to Loyola to visit a few weeks ago and very generously donated backpacks filled with goodies, signed autographs and took pictures with all the families. Ella's favorite part was that he gave every kids a Build A Bear in a Bears uniform. She was so excited to get the Build A Bear, and she ended up with 2 because her brother handed over his immediately. Now that he is 8, he is too big to be seen with a stuffed animal! .Mr. Tillman remembered that I spoke at his breakfast earlier this year and even took a few minutes to talk to us about how he plans to grow the breakfast for mom's next year. He is very grounded and down to earth for a sports figure. Very kind. Thanks Peanut!

Ella dressed up for the movie.
Everyone have a Very Merry Christmas this year. I can't help but reflect where we were this time last year. Ella was in the throws of hard core chemo and her Aunt Carrie rented out an entire theater so she could see Tangled. Her hair was so thin, but we curled it and got a crown on her head. It was a good day.
Thank God for your blessings, realize everything you have to be grateful for, laugh even if you don't want to.
Merry Christmas and Happy New Year.

Blessings~Steve, Katie, Josh and Ella