4/17/12 - We climbed a mountain today

Our night nurse, Laura, was fantastic!  She was able to prick Haylee's finger while she slept with no problems.  However, at 6:30 this morning, she came in to tell us that she wasn't able to get enough blood from her finger and that lab would be up shortly to prick her finger and get what they need from her.  That didn't go over so well.  Haylee pitched a huge fit, screaming and crying, and I had to pretty much crawl in her bed, lie on top of her and hold her down so that they could prick her.  Once she realized it wasn't going to hurt, she was fine.
We went back to bed until 10am.  The therapy dogs from Happy Tails were going to be in the lobby today so we got up quickly, got dressed, and went down to visit with them.  Adam came for a quick visit during that time.  Haylee really likes when the dogs come.  She tells me all the time 'I'm going to be a Vet when I get older because I love animals and would never hurt them'.  She told a few of the dog owners that today, too.  We headed back upstairs to have lunch and hang out for a bit before she went down to school.  CURE served the floor lunch today - sandwiches, chips, sweet goodies, and drinks from Jimmy John's.  It's so sweet of them to do that for all of us.
Colleen came by and checked on Haylee.  Nothing new to report.  Today is the last day of ATRA and the new oral anti-fungal would start tomorrow.  The rash looks worse but according to the dermatologists, it looks to be 'coming together' as opposed to remaining spotty and lacy so they think by the way it's looking that it's drug-related.  Haylee still has no other symptoms to speak of and no fever which is no reason for them to think it's viral.  Her ANC is so small that it had to manually be processed...which means it hasn't come up from the 20 it was yesterday.  Because of the study she's on, an additional blood test is needed for today.  After this, they are holding all blood work until Thursday morning.  Haylee wasn't happy about the additional blood test, especially since it would be an actual blood draw and not a finger prick.
School was from 12:30-2pm.  Barrow county is on spring break this week, but Haylee had a few things to finish up from last week.  I may not make her go everyday, but she has to go until she's caught up.  After school, the nurse came in an put EMLA on 3 different spots for lab to be able to draw from.  Haylee gets so worked up and and so upset over the thought of pain possibly coming from a needle stick.  I understand where she's coming from - no one likes to be hurt - but I try to tell her the EMLA does work and she won't feel a thing from it.  She shuts me out and worries and worries.  I won't go into the horrific details but in the end, it took about 1 1/2 hours from the time the EMLA was wiped off until they finally got blood from her.  5 nurses had to end up holding her down to get it (and that was the very last resort.  They exhausted everything else they had).  I was in and out during that time trying to do what I could do to help but she wasn't hearing me or anyone else for that matter.  I just sat and cried (but tried not to in front of her).  I didn't know what else to do.  I didn't know how else to make it easier on her.  She forgets about all the conversations we have about how by using the EMLA it doesn't hurt, that getting upset makes it worse, etc.  Lindsay (CL) and Stacy (our day nurse) said that blood draws are the one thing she has control over and she wants to be in control of something.  Lindsay reassured me that no matter how I felt about how things went, I said and did all the right things to her.  It was a very trying situation and it made me feel better about my abilities to handle everything. 
This will tell you have resilient she is....I was still in the hallway with Lindsay and Brittany (CL), crying no doubt, when I heard her laugh!!  That was not the same Haylee we all saw a few minutes prior.  After everyone left and we were finished talking and crying together, we hugged it out and went about our night.  She told me that when she has labs done on Thursday, she would rather them do it in the bend of her arm like they did today because......wait for it......it didn't hurt!!  That's HUGE for her to say!!  She also said she could deal with the finger prick and the actual lab draw without getting so upset, as well as the port access.  Maybe she gets it now...we'll see. 

Counts haven't changed.  Platelets down a little bit, blood went back up, but no ANC or SEGs :(

Please pass along or promote through Facebook, Twitter, or to anyone who would be interested the link for Haylee's YouCaring site!  Thanks again!
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee