12/6/11 - Happy Tails and Sleepy Days

We had a better night last night because Haylee slept!!  She was up at 7am for a potty break and couldn't go back to sleep.  She began running a fever around 8:30am so they went ahead and gave her all of her AM meds as well as Tylenol and a dose of morphine for the mouth pain she was complaining about.  She got a Boost Kid Essentials down before she took a nap until 10:30am. 
The Happy Tails Therapy Dogs were downstairs in the lobby and she was really excited about them so we went to check them out (she saw different dogs Saturday with Nonna).  The dogs are really neat - they lie there or come right up to you if you stick you hand out to them. 
We went back upstairs and I showed her this blog about her.  She said, "I see it."  That was it!  Ha ha!  She hasn't had the chance to read it and once she does she will understand why it's so important to me to get this out to people and for me to just get my thoughts down.  My friend, Meth, came by for a visit and Adam came to eat lunch with us.  She was still out of bed and on the couch when they arrived.  She started complaining pretty bad about her mouth sores so the nurse came in and gave her a dose of morphine so that she could go down to the cafeteria and have lunch (drink her Boost!).  The nurse said she should be fine to go downstairs - she wasn't going to fall down or anything.  WRONG!  She was passed out cold within 5 minutes.  Meth stayed with her in her room while Adam and I went to get lunch.  She slept from around noon until 4pm.  She was super tired from her big day yesterday, I guess. 
Still not eating, she drank another Boost when she got up.  Dr. Kellar came in during her nap and told me along with watching her WBC count to rise, to look for her monocyte and neutrophil count to rise - which they aren't.  She currently has no monocytes.  Monocytes show them that her bone marrow is producing normal cells and not leukemia cells.  I promised her she could watch the Twilight Saga so we began watching 'Twilight'.  I think she liked it...?  The nurse is afraid she's going to spike another fever soon so they are watching her closely. 

On another note, Adam went to meet someone (we will call her Mary) who wanted to buy some decorative mirrors from us off Craigslist.  She knows our situation and has read the blog.  She made a sizable donation in Haylee's honor in addition to buying our mirrors.  I would like for her to know that we are extremely grateful and humbled by her and her family's selfless act of kindness.  It means so much to us to know that there are still wonderful people in the crazy world we live in such as Mary, who still know what it means to love one another.

WBC - 2110
Platelets - 29,000
Hemoglobin - 9.3
Neutrophils or SEG - 2.0
Monocytes - 0

12/5/11 - Had a busy day!

A lot went on around here today and Haylee joined in the fun!  I learned how to change her central line dressing - all by myself - as well as the cap on her central line tubes. 
She went to school for an hour around 10:45.  After school, she shopped in the North Pole Holiday Shop to pick out a present me and Adam (they would only let her do 2 so she couldn't get Mason one).  We had lunch with PawPaw and Daddy - well we ate Moe's/Cafeteria and she drank milk and looked at the aquarium!  She visited with PawPaw.  They joked around, played 'thumb war', and just talked.  My dad was tickled that she was doing good and happy.  That's the best he's seen her in a long time. 
She took a nap then Dr. Keller came in and took a look at her.  He said they are so impressed and happy with her progress.  Haylee asked him how long her mouth would hurt and he said by the end of the week she should feel a difference in the sores.  I asked him when he thought she would get to go home.  He said as long as her counts continued to rise, she stayed stable, and began eating and taking in fluids like normal...she could go home anytime.  He said we're now on a day by day stay.  That's the best news I've heard in almost 3 weeks!!  She's going to make it home for Christmas - I can feel it in my heart of hearts!!  She told me today she didn't want to be here during Christmas and I reminded her what Dr. Kellar said.  She said she could do it. 
They did the Christmas tree lighting tonight as well as brought in a band called 'Unhindered' to sing some Christmas songs.  They did a pretty good job.  I was taking pictures then she took the camera and took her own.  They lit the tree and had a bit of technical difficulty - the top half didn't light!  It was pretty anyway and Haylee had a good time.  She had to have some morphine after trying to eat a bit of dinner and they also started her on a new anti-fungal medication as a preventative treatment. 

The results of the blood cultures came back and all was negative :)

WBC - 1970
Platelets - 49
Hemoglobin - 9.4

12/2/11- 12/4/11 - Weekend with Nonna

My mom, "Nonna", came to stay with Haylee for the weekend.  Her teacher from school came to visit her in the evening and brought her schoolwork and some goodies to help keep her busy during the days. 
On Saturday, she visited with my aunt and uncle as well as her PawPaw (my dad) during the day.  Milk is about the only nutrition and fluids she's been taking in - she's back to not eating.  They had to hook her back to the IV fluid bag.  She had been getting Lortab for pain but with nothing on her stomach but milk and slushies, she ended up throwing up.  She also had to be given platelets.  She played board games with Nonna and Aunt Sherry (and cheated I think!). 
Saturday evening, she spiked a fever of 102.  Since we were waiting for blood cultures to come back they went ahead and started her back on her Fortaz antibiotic and started her on Vancomycin, another antibiotic.  They began running the new antibiotic into her so fast she developed what is called "Red Man's Syndrome" where she turned red all over and began itching non-stop.  Her scalp turned red, her hands and feet started itching real bad.  They slowed the antibiotic and gave her some benadryl to stop the itching.  She was fine after that. 
Sunday, she had a visit from her 2nd grade teacher and perked up some.  She was very blah when I came back.  Her and Nonna met us downstairs and she played with Mason some.  Even laughed and giggled with him!  But she still doesn't miss him (so she says....!).  When we said goodbye to Nonna, Daddy, and Mason, we came back upstairs and she was still blah.  I asked if it was normal for kids to slip into a kind of depression and yes, it is.  She seemed like that's what was happening.  I'm sure it's difficult - stuck in the same hospital room day in and day out, not going outside, feeling sick, mouth hurting from mouth sores - it's a lot for a kid to handle. 

MRI results came back Friday morning - all is good!! 

12/2
WBC - 1620
Platelets - 21,000
Hemoglobin - 12

12/3
WBC - 1120
Platelets - 11,000
Hemoglobin - 11.3

12/4
WBC - 1290
Platelets - 61,000
Hemoglobin - 10

12/1/11 -25 Days of Christmas!

The hospital really does some great things for the kids during Christmas.  They have different holiday activities the kids can participate in and it makes the time pass by as well as their time here special.  Today, Haylee and I went down to the lobby and had she had her picture taken with Santa (picture to come when they email it!).  She also went out to the garden to see the real reindeer and she thought that was so neat!  Later in the evening, her teachers when she was in PreK came to visit her and brought her ornaments and garland for her Christmas tree and brought along art supplies and all sorts of goodies.  She really likes her tree and the different ornaments they brought to put on it. 

They took her off of her Kytril (for nausea) and Allopurinol (breaks up uric acid) because they said she didn't need it.  She is starting an anti-viral medication to see if it will help the mouth sores any.  They drew blood for cultures to test for different viruses like strep throat, chicken pox, herpes simplex (cold sores), and a few other things.  We should get those results back in a few days. 

WBC - 1660
Platelets - 29,000
Hemoglobin - 11.7

11/30/11 - The beginning of the mouth sores

Haylee's been in another pretty good mood aside from she's developed some mouth sores from the chemo and ATRA.  They're pretty sore so eating has become a chore now.  We've still been getting her to drink which is good.  She's been sleeping on and off today.  She did have to have 2 bags of blood today due to her hemoglobin dropping under 8.  No real changes today...no news is good news!

WBC - 1640
Platelets - 73,000
Hemoglobin - 6.6

11/29/11 - Finally, the MRI.

Haylee had her MRI today, finally.  They wanted to still get the MRI just to make sure no bleeding was going on and everything was still good.  She went down around 12:30pm and got her Versaed (giggly juice) and got set up for the MRI.  She had general anesthesia since she couldn't handle the sedation last time.  When she got out at 3pm, she was out until 7pm.  They had to wake her up to take her morning ATRA pills and she was ANGRY!  She was yelling at me and swung at me and everything!  After the nurse left and she went back to sleep, I went in the bathroom and cried.  I know it's not something she can help and it's not her but I didn't know what to do.  I just have to keep thinking, "I can do this.  Don't let her reactions get to you.  She's sick and is handling it the best she can."

On Monday, they took her off of the antibiotic (Fortaz) she had been getting since she was doing so well.

WBC - 1760
Platelets - 81,000
Hemoglobin - 8.4

11/27/11 - Start of an uphill battle

I feel like I can officially say that she's on the road headed up.  Sure, there will be some pretty bumpy paths but she's been doing great!  She doesn't sleep very well but all in all had a pretty good day today.  She played and was in a good mood most of the day.  When I came back from my night with Mason, I brought her pink Christmas tree to put in her room to make it more festive.  She enjoyed putting it up with me.  One of my friends bought her a pink ornament that says "Diva" on it...so true!  That was the first ornament for the tree.

(the picture shows the best smile we've seen from her since last week in the PICU.)

WBC - 3330; 2490
Platelets - 52,000; 45,000
Hemoglobin - 9.0