Haylee was de-accessed this morning with a little drama but not too much. She was hoping she wouldn't have to be re-accessed and it's an option but she would have to have either her finger pricked or blood drawn from her arm everyday....she said re-accessing would be better. Leah came in to de-access and Haylee put it in her head that it would hurt. When it finally came out, she said 'Ow' but I don't think it's as bad as she makes it out to be. I believe it's probably uncomfortable pressure, but not painful.
The therapy dogs came to visit this morning - Haylee loves their visits. We saw Dooley, the Golden Retriever (who is a cancer survivor), Finley who was a big hairy dog of some kind, and Go-Go, the Welsh Corgi. All the dogs who visit are so sweet and just sit there and let all the kids pet and love on them. I think they secretly enjoy it!
I asked Leah if Haylee was allowed to take a walk along the outside perimeter of the hospital (its a 3/4 mile path) and she said that as long as she wore her mask, stayed on the sidewalk, and behaved it should be fine but that she would deny ever saying it was alright if asked :) So...we went for a walk! We didn't walk along the entire path but we walked probably 1/2 mile of it. There is construction going on the back side of the hospital which would cause us to cross the street and I didn't want to take any chances near the construction. Halfway through, she started complaining but I made her push through. I told her it was going to become a daily thing and to get used to it. It gets us out and away from within the hospital walls. I liked it but I can't say Haylee did (LOL).
The doctors came in to say that counts finally hit bottom - no ANC, no SEGs. Up is the only direction to go now. Everything else looks good with her. If counts would hurry up and rise, we could be outta here!
Haylee played in the playroom for a little bit then I made her come back to take a shower (she takes baths everyday but can only shower once a week when she's de-accessed) and to enjoy that shower since she has to wait a week to do it again! She stayed in the shower for almost 30 minutes! She said she was playing in the water and taking her time. More power to her!!! Haylee started 2 summer reading programs today - one through Barnes and Noble and one through Chuck E Cheese. She reads for at least an hour everyday. It gets her away from the electronics and keeps her reading through the summer.
Amanda (today's day nurse) came in to give her her antibiotic, check her vitals, and apply the EMLA cream at 4pm today. Danielle came in right at 5pm to help set her mind right with the re-access. By 5:15pm, Amanda and Leah came in to do the access. Out of all the actual accesses, today was the best by far (aside from the fact that once Leah did the access, the needle hit the metal side of the port and she had to maneuver the needle to the right spot and with the pressure and pushing, it was hurting Haylee). She earned herself more money and another stuffed animal from the gift shop. I was so proud of my girl today!! I can't (and don't) expect her to just lay there and let them access her willingly with no emotions. This is a grown-up thing she's going through at 9 years old. She's doing fantastic and handling everything much better than most kids, even most adults. If she can keep still, keep her hands down and away from the site, not argue and fight with us (too much anyway), and keep the crying to a dull roar....that's perfect to me. That's exactly what she did today :)
After the access, she acted like she was a little mad at Leah at how the access went. Leah apologized to her and let her know she would never hurt her intentionally. Haylee kind of nodded and kept mum (she was still emotional from the access). Danielle took Haylee down to The Voice to visit with Ms. Wendy (the DJ) and to make her feel better. She came back with an actual record (yes, a record!!) with 2 Justin Bieber singles on it. Apparently, the records were sent from Bieber's people and aren't being given out until January when he does his show here. I think the hospital is still trying to get him to come for a visit. Haylee was so excited! She showed all the nurses up here, especially Linnea, who makes it a point to talk about The Beebs with her. The night receptionist, Nicole, showed Haylee that her picture with Gavin Degraw was on the hospital staff's home screen for CHOA (where they go for information, to clock in, or anything else staff related). Jill had told us last night and a few nurses told us through out the day today, but Nicole actually showed us. It's neat to know that every staff member in the hospital sees Haylee and Gavin Degraw when they clock in everyday!
We went downstairs and got her stuffed animal that she wanted. She found it in the gift shop yesterday and hid it behind other stuffed animals because it was the last one and she didn't want anyone else to get it! Haha! I've done that with clothes before! We came back upstairs and had dinner then she went to the playroom to play the Wii for a bit. Leah went in to apologize to her again for today and Haylee told her she was never mad at her and that she knew Leah would never hurt her on purpose. Haylee and Leah are buddies :)
The day ended up being a good one - not a lot going on but plenty at the same time.
WBC - 1830
HGB - 8.5
Platelets - 100k
ANC - 0
SEGs - 0
The fundraiser is still going on!! We really would like to reach at least half of our goal to ensure that all of our financial obligations can be taken care of. Please promote through Facebook, Twitter, and through email to get the word out!!! Thanks!
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee
Please pass this along to any and everyone who can help! If you are aware of any other way to get the fundraiser out in the community, please let me know!
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