PLEASE CONTINUE TO PASS ALONG AND PROMOTE THROUGH FACEBOOK, TWITTER, AND TO ANYONE ELSE WHO MIGHT BE INTERESTED IN LENDING A HELPING HAND THROUGH HAYLEE'S YOUCARING WEBSITE. THANKS!!
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee
We have REALLY enjoyed our time at home this week!! Haylee and I are sooo glad to be home and Mason and Adam are glad as well. We've really had a relaxing, fly-by-the-seat-our-pants week. With Haylee's counts being down, we really couldn't make any pressing plans. We never knew what could happen.
We ran errands each day that we could've done in one day, but at least we left the house! By Friday, I told her she didn't have to wear her mask anymore as long as she didn't get close to anyone. She was grateful! Wearing the mask means not wearing her glasses because her breath fogs them up and without the glasses, she can't see very well.
Haylee had her last meeting for the school year with her H/H teacher on Thursday. Since we left all of her books at the hospital (on accident), she was able to complete all of the work for this week, last week. We turned it in to her school today and will finish up everything else this week.
Our week has been WONDERFUL! We've missed being at home. Haylee goes back into the hospital tomorrow at 8am for a BMA and an LP with a chemo injection. She will be moved to the inpatient floor sometime after all that.
Thanks to everyone for keeping up with the blog, for supporting Haylee and keeping her in your thoughts! She's making it - feeling good and still happy!
~Hope for Haylee~
April 30, 2012
April 25, 2012
4/25/12 - WE'RE HOME!! (for a week anyway!)
We came home today!! It's only for a week but a weeks a week! Haylee's counts are still down but they are recovering nicely. She was a little nauseous this morning but it passed. She ate breakfast and felt a little better. The sores in her mouth are getting a little worse but don't seem to be bothering her as much as they did last time around. She's got a little bit of the mucousitis going on and her lips are chapping...boo! Comes with the chemo territory. Her counts coming up will help everything get back to normal.
Colleen came in just before rounds and told us that her discharge papers were signed and ready to go whenever we were!! I packed up most everything last night but was afraid to take some of it down to the car in case something happened. I got everything down to the car this morning, signed the discharge papers, grabbed Haylee, and off we went!! We made it home around 1:30pm.
Haylee's scheduled to go back inpatient on May 1. She has a clinic appointment at 8am for a bone marrow aspiration and spinal chemo injection. After she wakes up and gets around, they will move us back over to the inpatient side. Hopefully, the port accessing for all this will go okay. Maggie will be there....maybe that will help!
There may not be a lot going on with the blog but check back from time to time...I'll post updates on our time at home!! Glad to be back!
Tuesday's counts:
WBC - 1870
HGB - 9.8
Platelets - 212k
ANC - 40
SEGs - 2
Monos - 28
Lymphs - 67
Colleen came in just before rounds and told us that her discharge papers were signed and ready to go whenever we were!! I packed up most everything last night but was afraid to take some of it down to the car in case something happened. I got everything down to the car this morning, signed the discharge papers, grabbed Haylee, and off we went!! We made it home around 1:30pm.
Haylee's scheduled to go back inpatient on May 1. She has a clinic appointment at 8am for a bone marrow aspiration and spinal chemo injection. After she wakes up and gets around, they will move us back over to the inpatient side. Hopefully, the port accessing for all this will go okay. Maggie will be there....maybe that will help!
There may not be a lot going on with the blog but check back from time to time...I'll post updates on our time at home!! Glad to be back!
Tuesday's counts:
WBC - 1870
HGB - 9.8
Platelets - 212k
ANC - 40
SEGs - 2
Monos - 28
Lymphs - 67
April 23, 2012
Flashes of Hope Pictures :)
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
These pictures were taken at the end of February when Haylee was admitted with fever and positive blood cultures. I was NOT supposed to be in these pictures but the photographers conned me!! They turned out really well, regardless! My baby's beautiful :) Enjoy!!
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee
These pictures were taken at the end of February when Haylee was admitted with fever and positive blood cultures. I was NOT supposed to be in these pictures but the photographers conned me!! They turned out really well, regardless! My baby's beautiful :) Enjoy!!
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| Sassy Pants! |
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| Sitting pretty |
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| She was kinda squishing my neck - haha! |
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| Even though her IV line was just dangling there, I still love this picture! |
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| One of my favs! |
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| Love my baby! |
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| Another fav! |
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| Love, love, love this picture! |
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| Again, love this! |
4/21-4/22/12 - Weekend time with Nonna
Please pass along and promote through Facebook, Twitter, and to anyone who would be interested in Haylee's YouCaring fundraiser site! Thanks again!
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee
Saturday, April 21
Haylee slept well Friday night. At midnight the night nurse, Regina, came in to draw labs but Haylee was sleeping on her belly and Regina had to wake her up to get her to turn over. Haylee hates to be woke up whenever it's not on her terms (just like her mama!) and needless to say she was a mad, mad, mad! Regina kept telling her to just turn over. Haylee was on the edge of the bed, then slid off to stand with her arms crossed. It scared Regina because she didn't know what Haylee was doing! When she woke up Saturday morning, the side rails were up on the bed and Dave the Duck was in the chair. Haylee looked around wondering...'how did Dave get in the chair and why are the rails up?!' Haylee and Nonna found out Saturday night when Regina came back that she was afraid Haylee was going to fall out of the bed and that Dave found his way to the floor and that's why the rails were up and Dave was in the chair.
Haylee and Nonna went to visit the retired greyhound dogs that came to visit in the lobby. There were 4 - Lola, Rex, June, and Thunder. When they were racing, their top speeds was around 45 mph! She enjoys when animals come to visit. She said she saw Sally, one of the therapy dogs. We don't get to see her too often.
Colleen came in and checked Haylee out and brought counts. She said to let me know that she had 1 monocyte!! I know that seems like nothing, but eventually that 1 will turn into 5, then 10 and so on.
Nonna went to McDonald's for dinner on Saturday - a treat for Haylee since I won't do that!! She liked the change from cafeteria food. She also pulled a tooth out on Friday night and was treated to a stuffed animal from the gift shop by Nonna since she doesn't believe in the tooth fairy anymore (even though we still give her money for her teeth).
Sunday, April 22
Haylee sent me a text from Nonna's phone letting me know her counts - 4 monocytes today!!! And her platelets went up 15k on their own! She had 92% lymphocytes - 8 lower than Friday. Looking good, looking good!!
She was nauseous this mornig and said she had a weird taste in her mouth and ended up throwing up while Nonna stepped out to go to the cafeteria. She never threw up again after that and ended up eating a little breakfast. Dr. Castentine peeked in to check on Haylee and said her counts looked good and might even be able to go home this week! I won't get my hopes up, just in case it doesn't happen. You know, hope for the best and expect the worst! Her rash looks tons better, too! It's still there but not as red. It's actually kind of taking on a purple color, just down her legs and trunk. Her arms and face look GREAT!
I came back this afternoon and noticed that her hair (well, the stuble since it was shaved Friday) has thinned out and she has a few very small spots where her head it bald. I brought her some hats to wear.
Haylee's been complaining about a few mouth sores on the tip of her tongue and inside of her bottom lip since about Friday. They brought her in 2 different washes for her mouth that she could use but she refuses cause they taste bad to her. Nonna and I both told her that those washes help but that if she chooses not to use them, it was up to her and not to complain if the sores hurt. She didn't eat lunch today because of the sores but did eat dinner tonight. She still hasn't used the washes since I've been back. She complained of being dizzy and of a headache right before dinner - I figured getting some food in her might help the problem and it did some. She took some tylenol as well to help.
Haylee went to the playroom with a volunteer for a little while and played. She came back, had a bath, and settled in for bed.
Saturday and Sunday's counts:
WBC - 1660 ; 2040
HGB - 9.8 ; 10
Platelets - 45k ; 60k
Monocytes - 1 (yay!) ; 4 (YAY!)
Lymphs - 98 (watch for this number to come down) ; 92
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee
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| Petting the Greyhound Dogs |
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| Upclose and personal with a Greyhound |
Haylee slept well Friday night. At midnight the night nurse, Regina, came in to draw labs but Haylee was sleeping on her belly and Regina had to wake her up to get her to turn over. Haylee hates to be woke up whenever it's not on her terms (just like her mama!) and needless to say she was a mad, mad, mad! Regina kept telling her to just turn over. Haylee was on the edge of the bed, then slid off to stand with her arms crossed. It scared Regina because she didn't know what Haylee was doing! When she woke up Saturday morning, the side rails were up on the bed and Dave the Duck was in the chair. Haylee looked around wondering...'how did Dave get in the chair and why are the rails up?!' Haylee and Nonna found out Saturday night when Regina came back that she was afraid Haylee was going to fall out of the bed and that Dave found his way to the floor and that's why the rails were up and Dave was in the chair.
Haylee and Nonna went to visit the retired greyhound dogs that came to visit in the lobby. There were 4 - Lola, Rex, June, and Thunder. When they were racing, their top speeds was around 45 mph! She enjoys when animals come to visit. She said she saw Sally, one of the therapy dogs. We don't get to see her too often.
Colleen came in and checked Haylee out and brought counts. She said to let me know that she had 1 monocyte!! I know that seems like nothing, but eventually that 1 will turn into 5, then 10 and so on.
Nonna went to McDonald's for dinner on Saturday - a treat for Haylee since I won't do that!! She liked the change from cafeteria food. She also pulled a tooth out on Friday night and was treated to a stuffed animal from the gift shop by Nonna since she doesn't believe in the tooth fairy anymore (even though we still give her money for her teeth).
Sunday, April 22
Haylee sent me a text from Nonna's phone letting me know her counts - 4 monocytes today!!! And her platelets went up 15k on their own! She had 92% lymphocytes - 8 lower than Friday. Looking good, looking good!!
She was nauseous this mornig and said she had a weird taste in her mouth and ended up throwing up while Nonna stepped out to go to the cafeteria. She never threw up again after that and ended up eating a little breakfast. Dr. Castentine peeked in to check on Haylee and said her counts looked good and might even be able to go home this week! I won't get my hopes up, just in case it doesn't happen. You know, hope for the best and expect the worst! Her rash looks tons better, too! It's still there but not as red. It's actually kind of taking on a purple color, just down her legs and trunk. Her arms and face look GREAT!
I came back this afternoon and noticed that her hair (well, the stuble since it was shaved Friday) has thinned out and she has a few very small spots where her head it bald. I brought her some hats to wear.
Haylee's been complaining about a few mouth sores on the tip of her tongue and inside of her bottom lip since about Friday. They brought her in 2 different washes for her mouth that she could use but she refuses cause they taste bad to her. Nonna and I both told her that those washes help but that if she chooses not to use them, it was up to her and not to complain if the sores hurt. She didn't eat lunch today because of the sores but did eat dinner tonight. She still hasn't used the washes since I've been back. She complained of being dizzy and of a headache right before dinner - I figured getting some food in her might help the problem and it did some. She took some tylenol as well to help.
Haylee went to the playroom with a volunteer for a little while and played. She came back, had a bath, and settled in for bed.
Saturday and Sunday's counts:
WBC - 1660 ; 2040
HGB - 9.8 ; 10
Platelets - 45k ; 60k
Monocytes - 1 (yay!) ; 4 (YAY!)
Lymphs - 98 (watch for this number to come down) ; 92
COUNTS ARE ON THE RISE!! WHOO HOO!!
April 20, 2012
4/20/12 - The mountain shrunk down to a really big hill
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| Haylee with all the Jimmie stuff |
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| Posing with her Jimmie snuggie :) |
Reaccess day!! I guess in anticipation of it, neither of us slept very well. Haylee was up and down, as usual and I wasn't asleep until after 2am. The night and day nurses came in about 7:45 and put the EMLA on her port site and said they would be back around 8:30 or so. They came back, with Versed in hand, and Haylee saw that. I knew then it would be hard for her to not want it and even harder for me to battle with her since it was right there. I chose to let her have it but told the nurse to cut the dose in half (which she did). Danielle (CL) was brought in and her, Haylee, and I sat around and chatted for a bit before they brought in their supplies. Haylee got up to use the restroom and somewhere in there, she lost all confidence she had. She said she forgot what it felt like, she was scared, she wanted Leah to do it (she wasn't there today), etc. My deal with her was that as long as she stayed in her bed and did the best she could to stay calm, I would stay in the room. She broke her part so I left. We were on a time schedule with the EMLA and was getting really close to that time frame when the EMLA would stop working so I told them to do what they had to do. I stayed just outside the door and listened to her yell at the nurses about how she had it and to let her go. It went dead quiet for about 30 seconds and then I heard the nurses say how it was over and she did great! The whole thing took about 30 minutes - much different than almost 2 hours. I walked back in and they went to flush her and couldn't. They also weren't getting any blood return. They had to move it around (without taking it out) to get it positioned right but after a couple of minutes, they finally did. I held it together the entire time :)
The differences/accomplishments with this compared to Tuesday:
1. There was only 3 nurses and 1 Child Life today. Tuesday had 5 nurses, 2 lab techs, and 1 Child Life.
2. She didn't seem to stress as much today as Tuesday.
3. She didn't cry as much today but yelled and argued more.
4. I was prepared for the worst and held it together today.
5. She was on Versed today and not on Tuesday. Not necessarily a good thing but it was a difference.
6. She accomplished 2 of the 4 things on her reward chart - keeping her hands away from the site and not looking when they accessed her. She gets her frozen yogurt :)
The Versed finally wore off in time for school. After school, we got a package from Hendrick Motorsports full of lots and lots of cool #48 racing stuff!! I was so excited (Jimmie's my fav!)! Haylee really liked the hats, the shirts for her, a pearl bracelet, and the die cast car. They sent her a signed postcard from Jimmie Johnson and a picture of him with Rick Hendrick, his crew chief, and all 5 of his trophies. We loved it!!! ( Thank you, thank you, thank you to Michelle!!!!! We're looking forward to Tuesday's package from you! )
Haylee opened her 'diner' in the playroom again today. All the nurses comment on her diner. They think it's cute. Danielle and Lindsay (CL) came in and Haylee had her head shaved again. Her hair started falling out in clumps again so she opted to have it shaved off so only the stuble would fall out. She will probably be Mr. Clean bald before we go home. She's fine with it and asked me to bring her some hats from home.
Thanks to The Madison Childhood Cancer Foundation, we ate dinner from Moe's for free. They give all the AFLAC families a gift certificate to zifty.com to buy whatever they want and have it delivered to the hospital. What a great gift!!
Nonna is here for the weekend and I'll update Sunday night. Have a great weekend!!!!
ANC - 0
SEGs - 0
Platelets - 49k
No where to go but up!!!
4/19/12 - Day 16
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
Haylee wasn't as restless last night but still restless, nonetheless. She only woke me up once to tell me her mouth was hurting. I heard her toss and turn less than last night. I was the restless one! Being at the hospital day in and day out can really wear on you.
Haylee played 'Mario Kart' on the Wii with a boy on the floor for a little while. Adam showed up and told us he thought something was going on downstairs cause the CHOA mascots, Hope and Will (isn't that too cute?!), along with a therapy dog. When we got down there, we realized that some sort of presentation was going on. Hope and Will were available for picture opportunities but Haylee said no.
We had lunch with Adam and visited with him for a little bit. I went ahead and let her skip school today but told her she had to get in a bit of time tomorrow to make sure she's completely caught up to start next weeks work. Colleen came in for her daily check-in but there's nothing new. Haylee's rash is looking tons better, however!! It seems to be fading from her upper extremities and moving down to the lower. The intense heat that was in her arms yesterday has diminished soooo much! The rash is still there, don't get me wrong, but compared to 2 days ago and even yesterday she looks 100% better. She didn't even want the cream put on. I think I'm going to convince her that it needs to be put on anyway, just to help things along. Dermatology went ahead and took her off their list to be seen but will check with the doctors periodically, just in case.
After all the check-ups, we hung around the room. Brittany (CL) came by to see if she wanted to join a group of girls they gathered together to dabble in a little bit of art (Haylee's famous line). She went for about an hour then we headed off to Thursday night BINGO. She won an origami set, an elephant stuffy that goes with the cheetah stuffy from last week, and a Princess and the Frog play set. Meth showed up in the middle of BINGO to visit with us. CURE served us dinner again - fried chicken and yummy sides. Haylee played games on Meth's phone, watched Bieber videos, and played with us.
Lisa, our night nurse, came in to let me know they planned to reaccess Haylee and draw labs at 6am. Um, no. That wasn't happening. Haylee is still up in the air about the accessing (as Meth and I found out tonight) and is not a morning person. They were not going to ruin her morning that way. I asked for them to put the EMLA on her around 8am or so and reaccess around 9am. It's still earlier than what we're used to getting up, but it's better than 6am. We will make sure and get up and around at 8am so we are awake by then. Meth and I casually talked with her about it - she's a little scared about it. I talked a little more about it with her after Meth left and I think she's going to do just fine with it. I just hope she doesn't make me a liar!
No counts today :(
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee
Haylee wasn't as restless last night but still restless, nonetheless. She only woke me up once to tell me her mouth was hurting. I heard her toss and turn less than last night. I was the restless one! Being at the hospital day in and day out can really wear on you.
Haylee played 'Mario Kart' on the Wii with a boy on the floor for a little while. Adam showed up and told us he thought something was going on downstairs cause the CHOA mascots, Hope and Will (isn't that too cute?!), along with a therapy dog. When we got down there, we realized that some sort of presentation was going on. Hope and Will were available for picture opportunities but Haylee said no.
We had lunch with Adam and visited with him for a little bit. I went ahead and let her skip school today but told her she had to get in a bit of time tomorrow to make sure she's completely caught up to start next weeks work. Colleen came in for her daily check-in but there's nothing new. Haylee's rash is looking tons better, however!! It seems to be fading from her upper extremities and moving down to the lower. The intense heat that was in her arms yesterday has diminished soooo much! The rash is still there, don't get me wrong, but compared to 2 days ago and even yesterday she looks 100% better. She didn't even want the cream put on. I think I'm going to convince her that it needs to be put on anyway, just to help things along. Dermatology went ahead and took her off their list to be seen but will check with the doctors periodically, just in case.
After all the check-ups, we hung around the room. Brittany (CL) came by to see if she wanted to join a group of girls they gathered together to dabble in a little bit of art (Haylee's famous line). She went for about an hour then we headed off to Thursday night BINGO. She won an origami set, an elephant stuffy that goes with the cheetah stuffy from last week, and a Princess and the Frog play set. Meth showed up in the middle of BINGO to visit with us. CURE served us dinner again - fried chicken and yummy sides. Haylee played games on Meth's phone, watched Bieber videos, and played with us.
Lisa, our night nurse, came in to let me know they planned to reaccess Haylee and draw labs at 6am. Um, no. That wasn't happening. Haylee is still up in the air about the accessing (as Meth and I found out tonight) and is not a morning person. They were not going to ruin her morning that way. I asked for them to put the EMLA on her around 8am or so and reaccess around 9am. It's still earlier than what we're used to getting up, but it's better than 6am. We will make sure and get up and around at 8am so we are awake by then. Meth and I casually talked with her about it - she's a little scared about it. I talked a little more about it with her after Meth left and I think she's going to do just fine with it. I just hope she doesn't make me a liar!
No counts today :(
April 18, 2012
4/18/12 - Low key...all day :)
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| Dr. Pucci - in disguise! He has his 'gown' on and sporting 'blonde' hair! Just trying to be 'one of the girls'! |
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| OH! Busted :( |
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| Dr. Daisy and Dr. Pucci singing Haylee "The Alphabet Love Song" - I would love to have the words to it because it was super, super cute :) |
Haylee was a little restless last night. She kept waking up and wanting to tell me stuff, like that she felt like she may have some sores on her tounge and that she had to go to the bathroom. My responses...'we'll mention it to the doctors in the morning' and 'go if you gotta go!'. We both kinda tossed and turned last night, I think. You would think we would be used to it by now. Even though it's our 'home' for now, it's not forever. It's more like an extended stay hotel with room service and medical attention :)
The school room called to ask if it would be ok for Haylee to skip school today...school wanted her to skip! Haha! I would've loved for that to happen to me when I was in school! They were down a teacher today so short on help. Shortly after that call, they called back to say it was slow and she could go down for a bit. She went for about an hour this morning and finished up some work. I told her I would let her skip Friday since it's her spring break back home. She was happy about that!
The clowns came by for a visit this morning. Dr. Pucci and Dr. Daisy are too funny. Dr. Pucci was the only male and he was doing what he needed to do to fit in...so he dressed up like a girl. Haylee loves when the clowns visit. Dr. Pucci, Dr. Daisy, and Dr. Smartypants are my favorites. Haylee likes them all, but she likes Dr. Pucci the best :)
Colleen came by to check her out after she got back from school. No new changes. The new anti-fungal would start tomorrow sometime in the afternoon, I believe. No labs will be drawn until after her port is
reaccessed on Friday. Her counts will not change drastically from yesterday until Friday. They are going to give her a rest and deal with it all at one time on Friday. Hopefully, it will be a breeze!
We spent the rest of the afternoon just lounging around the room. Haylee played on the tablet, with her 3DS, and watched tv. She wanted to be lazy, so I let her. It was raining all day so we couldn't go outside and nothing was planned in the hospital today. Danielle came by around 4:15pm to see if she wanted to paint in the playroom with some other patients but she said no. Adam and Mason came down to have dinner with us. Haylee really wanted to play soccer with him and even though the rain had stopped by then, it was soaked outside. It was hard to keep Mason entertained in her room but we managed.
After Haylee's shower, she started complaining that her arms were itchy. I put some of the steroid cream on her arms that dermatology ordered for her and it worked for a minute, but once the cool wore off, the itch came back. After about 20-30 minutes, the itching stopped. We think it was because the hot water from the shower was hitting her already inflammed skin, making it itch. I had some oral itching medicine ordered for her, just in case, but so far we haven't had to use it.
No counts today!
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
April 17, 2012
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
April 16, 2012
4/16/12 - Wow...what a rash!
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| Haylee's angry rash :( but smiling through it all! |
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| It looks much worse in person :( |
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| Singing with some guys from the Songs for Kids Foundation (she was singing "You Belong With Me" by Taylor Swift) |
Even though Haylee slept all afternoon yesterday, I still managed to get her to sleep by 11:30pm. That seems late but not for someone who slept from 2:30-7pm! She woke up this morning with the rash pictured above. Amy, our nurse, and Kelly, one of the PAs, came by to look at Haylee because the rash got worse overnight. It was all over her everywhere! It looked very lacy and was worse on her upper body (face, ears, chest, back of neck, and arms) compared to her lower body. It's also warm to the touch but she hasn't been running a fever with it. I did notice that the pinpoint spots on her legs got brighter as the day went on and the spots began popping up on her feet. It's raised in some areas (on her arms) and flat in most other areas. Dermatology was called in and ultimately, they aren't sure what has caused the rash but since it doesn't bother her - it doesn't itch or burn - they don't want to do anything except let it run its course. What they do think is that its drug related - something she's taking. Since the anti-fungal medication she started 8 days ago is the only thing that she hasn't had before, they discontinued it and she will start an oral one in a few days. They ruled out viral because she hasn't have a fever or any other symptoms to go with it. They also mentioned it could be a reaction to the platelets but she started a rash before that and was pre-med for it, which is supposed to prevent reactions. To be right here with her and see it makes me want to start itching everywhere. It looks like it itches and is very uncomfortable, but she's been acting fine all day...as if she has no rash at all. She's been running and playing and acting like normal Haylee. I guess it bothers me more than anything. I just feel so bad for her. No one knows where it came from but everyone has a theory. I know rashes are hard to diagnose and I'm okay with what they've told me, but it's just frustrating. Here again, another one of those things I have no specific answer for...makes me CRAZY!
Upon waking up this morning, I looked at her port and there was dried blood around it again. Amy said sometimes kids are rough in their sleep (and Haylee is) and can sometimes stretch out the hole where the needle goes into the port, causing it to bleed some. She also has the hematoma underneath that hasn't completely healed. It was discussed during rounds and I was given the choice to either have her port
de-accessed for a few days to let the hematoma heal up some and draw labs from a finger prick or dressing changes 2-3 times a day to clean up the blood. I talked to Haylee but ultimately chose to de-access her and let her port heal. She's not happy about the finger prick but was thrilled about being free! She didn't do great getting de-accessed but it wasn't the worst she's been. Since she's been having such a hard time with the port lately and the accessing itself, I made 'Port Reward Chart' (my dad's idea). She has to accomplish 4 things - staying calm, not looking while they access it, keeping her hands away from the site during the process, and not arguing with anyone trying to help. She can get rewards from accomplishing 1 of them or all 4. If she can do the access without Versed, she gets 2 rewards. Eventually, she will have to do the access with no Versed, but we've got to do what we have to to get there.
Two guys from the Songs For Kids Foundation came and sang songs with the kids in the lobby. Haylee got up and sang a few songs - 'You Belong With Me' by Taylor Swift, 'The Climb' and 'Party in the USA' by Miley Cyrus. She was AWESOME!! They tried to get her to help them sing 'Lean On Me' but she didn't know the words.
We played in the playroom for a little bit and had dinner and showers. She took her pills, along with a Benadryl pill, and was out by 10pm.
WBC - 1910
HGB - 10.8
Platelets - 151K
ANC - 20
SEGs - 1
4/14/12 (evening) - 4/15/12 - Sleepy days and rashy nights
Saturday, April 14 (evening)
After getting her port re-accessed and recovering from the Versed, Nonna showed up for the rest of the weekend. Haylee went to the playroom and played with the girl next door to us (she responded to Haylee's 'Get Well' card she made earlier). The Emory students were in the lobby for a musical performance. The students were outstanding. They had no musical instruments; all the sounds were made with their voices. At 5pm, the GA State University Marching Band played in the garden. The band director's girlfriend played with Haylee in the grass. She showed her how to whistle with a blade of grass. Haylee thought that was the coolest thing! She wanted to be able to take her mask off and try it, but with her counts being so low, she couldn't.
WBC - 1860
HGB - 11.9
Platelets - 28K
ANC - 240
SEGs - 11
Sunday, April 15
Haylee woke up with a bit of a rash today...more like she was 'pink' all over. Amy, the nurse, said they would monitor her and pass it along during rounds. She also woke up with her port area having bled some under the dressing during the night. Having checked her counts, they went ahead and gave her platelets, hoping that would help keep it from bleeding underneath in the future.
Haylee and Nonna baked chocolate chip cookies for the patients and families. The entire AFLAC floor smelled good! Haylee took some room to room and then left some in the family room. She also left a plate for the nurses and staff in their break room. The staff plate was gone rather quickly!
She got 2 units of platelets after cookie making. Nonna made sure they pre-med her (Benadryl) for them since she reacts to blood products (even though she's never reacted to platelets before). After the first unit, they noticed she turned really red so they gave her another dose of Benadryl and she slept from 2:30-7pm. Celeste, her night nurse, changed her port dressing again. She did really well with it!
I noticed while she was sleeping that she was developing a pinpoint looking rash on her face, ears, arms, on her chest, and on the back of her neck (mainly upper body area). We went through the usual questions...laundry detergent change? Soap or lotion change?...but no, nothing we could think of. Nonna said on Saturday night she was rolling in the grass so we wondered if it was just that, since her counts are down and anything could be affecting her at this point. They're still going to monitor her and the rash but it doesn't seem to bother her. It bothers me! I made her go to bed at 11pm or she would've been up all night long since she slept all afternoon.
WBC - 2140
HGB - 11.2
Platelets - 17K
ANC - 90
SEGs - 3
DON'T FORGET!! http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee
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| The GA State University Marching Band |
WBC - 1860
HGB - 11.9
Platelets - 28K
ANC - 240
SEGs - 11
Sunday, April 15
Haylee woke up with a bit of a rash today...more like she was 'pink' all over. Amy, the nurse, said they would monitor her and pass it along during rounds. She also woke up with her port area having bled some under the dressing during the night. Having checked her counts, they went ahead and gave her platelets, hoping that would help keep it from bleeding underneath in the future.
Haylee and Nonna baked chocolate chip cookies for the patients and families. The entire AFLAC floor smelled good! Haylee took some room to room and then left some in the family room. She also left a plate for the nurses and staff in their break room. The staff plate was gone rather quickly!
She got 2 units of platelets after cookie making. Nonna made sure they pre-med her (Benadryl) for them since she reacts to blood products (even though she's never reacted to platelets before). After the first unit, they noticed she turned really red so they gave her another dose of Benadryl and she slept from 2:30-7pm. Celeste, her night nurse, changed her port dressing again. She did really well with it!
I noticed while she was sleeping that she was developing a pinpoint looking rash on her face, ears, arms, on her chest, and on the back of her neck (mainly upper body area). We went through the usual questions...laundry detergent change? Soap or lotion change?...but no, nothing we could think of. Nonna said on Saturday night she was rolling in the grass so we wondered if it was just that, since her counts are down and anything could be affecting her at this point. They're still going to monitor her and the rash but it doesn't seem to bother her. It bothers me! I made her go to bed at 11pm or she would've been up all night long since she slept all afternoon.
WBC - 2140
HGB - 11.2
Platelets - 17K
ANC - 90
SEGs - 3
DON'T FORGET!! http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee
April 15, 2012
A fundraising opportunity for Haylee and our family
Below is a link for a fundraising opportunity for Haylee and our family. It will help with medical and financial expenses while Haylee is undergoing treatment for the next 2 years. Thank you in advance for your support!
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee
4/13-4/14/12 (morning) - Friday the 13th - Fresh Beat Band and port problems
Friday, April 13
Today started out like just any other normal day we've had so far. We slept until about 9:30 or so. Lindsay from Child Life came in to let us know that The Fresh Beat Band would be down at The Voice today at 2:30. I called Adam to have him bring Mason down to meet them with Haylee. Haylee went and played in the playroom for a little bit before school at 12:30. She's completely caught up with her school work.
We went downstairs around 2:30 and waited for The Fresh Beat Band to show up. They were caught in traffic so they were an hour late. It was so fun meeting them! They were super, super nice :) Mason was star-struck meeting them, especially Twist. He kept talking to him every chance he got. He told Twist and Shout that he knew one of Twist's songs and even sang it for them...they chimed in too! Haylee loved talking to Kiki.
After they left and we said our good-byes to Mason and Adam, we went back upstairs to have Haylee's port de-accessed. She was actually able to take a shower!!! She was soo excited about that. She bled a good bit from when it was de-accessed - through gauze and folded gauze and a bandaid. When she was done, the nurse came in and put the EMLA cream on her to take away the needle prick when they re-access it. She continued to bleed a little when the EMLA was put on but the nurse said it was normal. Brittany from Child Life came in to help distract her from the port access but it didn't work very well. I stepped out just before they did it because I didn't think I would be very helpful and to be honest, I just couldn't do it. I could hear her screaming and crying in the hallway. It's so hard to hear your child scared and in pain and know there is nothing you can do about it. It seemed like it took forever to get it done. I stepped back in as it was over and she was crying so hard she was shaking. They flushed her and she was saying it was burning. The nurse checked to see if she was getting blood return and said she was and that maybe it was because she was so upset and it was still sore. Haylee calmed down and was fine afterward.
My friend, Meth, came for a visit with Haylee and I. We had dinner together and played Yahtzee. Our night nurse, Heather, came in to hook Haylee up to her anti-fungal and when she went to flush her, she started saying it was burning again. Heather went ahead and hooked up the meds and Haylee was complaining still of it burning. About 10ccs went in and Heather stopped the meds. She checked blood return and it was fine but noticed she was swollen around the site. Once I mentioned about the bleeding from earlier, Heather called in the charge nurse to get her opinion. They thought it was possible that the needle might not be in all the way because she could have a hematoma (a bruise) around the port they were getting the blood return from. The steps were to have Heather try and push the needle back in and if that doesn't work, to have an X-RAY to see what's going on. Heather tried to push it back in without any luck. Haylee was in pain from Heather pushing on the site and was screaming. We told Haylee she would have to go down for the X-RAY so we could see what was going on. The X-RAY showed that the needle wasn't in place all the way so Heather de-accessed her and the bleeding started again. When Heather saw the bleeding, it really confirmed to her that the hematoma was what was going on because of the color of the blood. She also thought that the needle wasn't long enough to go through the bruise into the port because of the swelling so they would have to use a longer needle tomorrow. The flushes and the little bit of medicine Haylee got would just be reabsorbed into her body and it wouldn't hurt her. Haylee had to wear an ace bandage wrapped around her to hold heat packs in place over the site to help the fluid reabsorb and the swelling to go down. The doctor on call said she could skip her anti-fungal until tomorrow when she was re-accessed. By this time it was around midnight and Haylee went to sleep just after. Meth stayed with us during all this and I want to personally thank her for sticking it out with us!!!
Saturday, April 14
Since it was late before Haylee and I got into bed, we slept until after 10am. She had a rough night, poor baby :( Dr. Pauly came in and checked her out. I requested from Dr. Pauly to have Versed given to help her and she said 'no problem'. The port site didn't bleed through the night - what a relief! Our day nurse, Mildred, let her get up and awake and around 10:30 came in to put the EMLA cream on her site to have it re-accessed. She promised Haylee she would let it sit for at least an hour and that helped ease her mind some.
Haylee made 'Get Well Soon' cards for everyone on the floor and went around to put them on their doors. How sweet :) :) She got a response back from the girl next door to play in the playroom later on. Even the doctors and nurses commented on how sweet it was!
Around 11:50, Mildred came in and gave her the Versed and said it would take 15 minutes to kick in. Leah, the charge nurse, came in to place the needle to make sure it was done right this time. I stayed this time to stand in for Child Life, who doesn't work on Saturdays. Mildred and I helped to calm Haylee and make sure she didn't get her hands in the way. Haylee did FANTASTIC!!! She whined some, more out of fear I think, but Leah was able to get it in right away because they used a longer needle. Haylee layed around while the Versed wore off. A co-worker of Adam's, William and his wife, came by to meet and visit with Haylee. She was still a little loopy but ended up coming to before they left. Haylee and William played Jenga, per his request, and 'Rock, Paper, Scissors' and before too long they were coming up with some real whoppers to win...volcanos, hurricanes, tornados, earthquakes. It was cute and Haylee just laughed. They were showing her pictures of their cats and the bird nests they have in some of their plants at home. It was a nice visit from them.
Nonna showed up around 2:15 to stay with Haylee. They were going to have a busy weekend with all the stuff that was going on there plus, they were going to make cookies for the floor.
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| The Fresh Beat Band |
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| Talking on The Voice |
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| Mason and Twist chatting |
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| Kiki and Haylee talking on The Voice |
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| Haylee and Mason watching and listening |
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| Mason and Twist |
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| Mason and Haylee with The Fresh Beat Band |
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| The Fresh Beat Band |
Today started out like just any other normal day we've had so far. We slept until about 9:30 or so. Lindsay from Child Life came in to let us know that The Fresh Beat Band would be down at The Voice today at 2:30. I called Adam to have him bring Mason down to meet them with Haylee. Haylee went and played in the playroom for a little bit before school at 12:30. She's completely caught up with her school work.
We went downstairs around 2:30 and waited for The Fresh Beat Band to show up. They were caught in traffic so they were an hour late. It was so fun meeting them! They were super, super nice :) Mason was star-struck meeting them, especially Twist. He kept talking to him every chance he got. He told Twist and Shout that he knew one of Twist's songs and even sang it for them...they chimed in too! Haylee loved talking to Kiki.
After they left and we said our good-byes to Mason and Adam, we went back upstairs to have Haylee's port de-accessed. She was actually able to take a shower!!! She was soo excited about that. She bled a good bit from when it was de-accessed - through gauze and folded gauze and a bandaid. When she was done, the nurse came in and put the EMLA cream on her to take away the needle prick when they re-access it. She continued to bleed a little when the EMLA was put on but the nurse said it was normal. Brittany from Child Life came in to help distract her from the port access but it didn't work very well. I stepped out just before they did it because I didn't think I would be very helpful and to be honest, I just couldn't do it. I could hear her screaming and crying in the hallway. It's so hard to hear your child scared and in pain and know there is nothing you can do about it. It seemed like it took forever to get it done. I stepped back in as it was over and she was crying so hard she was shaking. They flushed her and she was saying it was burning. The nurse checked to see if she was getting blood return and said she was and that maybe it was because she was so upset and it was still sore. Haylee calmed down and was fine afterward.
My friend, Meth, came for a visit with Haylee and I. We had dinner together and played Yahtzee. Our night nurse, Heather, came in to hook Haylee up to her anti-fungal and when she went to flush her, she started saying it was burning again. Heather went ahead and hooked up the meds and Haylee was complaining still of it burning. About 10ccs went in and Heather stopped the meds. She checked blood return and it was fine but noticed she was swollen around the site. Once I mentioned about the bleeding from earlier, Heather called in the charge nurse to get her opinion. They thought it was possible that the needle might not be in all the way because she could have a hematoma (a bruise) around the port they were getting the blood return from. The steps were to have Heather try and push the needle back in and if that doesn't work, to have an X-RAY to see what's going on. Heather tried to push it back in without any luck. Haylee was in pain from Heather pushing on the site and was screaming. We told Haylee she would have to go down for the X-RAY so we could see what was going on. The X-RAY showed that the needle wasn't in place all the way so Heather de-accessed her and the bleeding started again. When Heather saw the bleeding, it really confirmed to her that the hematoma was what was going on because of the color of the blood. She also thought that the needle wasn't long enough to go through the bruise into the port because of the swelling so they would have to use a longer needle tomorrow. The flushes and the little bit of medicine Haylee got would just be reabsorbed into her body and it wouldn't hurt her. Haylee had to wear an ace bandage wrapped around her to hold heat packs in place over the site to help the fluid reabsorb and the swelling to go down. The doctor on call said she could skip her anti-fungal until tomorrow when she was re-accessed. By this time it was around midnight and Haylee went to sleep just after. Meth stayed with us during all this and I want to personally thank her for sticking it out with us!!!
Saturday, April 14
Since it was late before Haylee and I got into bed, we slept until after 10am. She had a rough night, poor baby :( Dr. Pauly came in and checked her out. I requested from Dr. Pauly to have Versed given to help her and she said 'no problem'. The port site didn't bleed through the night - what a relief! Our day nurse, Mildred, let her get up and awake and around 10:30 came in to put the EMLA cream on her site to have it re-accessed. She promised Haylee she would let it sit for at least an hour and that helped ease her mind some.
Haylee made 'Get Well Soon' cards for everyone on the floor and went around to put them on their doors. How sweet :) :) She got a response back from the girl next door to play in the playroom later on. Even the doctors and nurses commented on how sweet it was!
Around 11:50, Mildred came in and gave her the Versed and said it would take 15 minutes to kick in. Leah, the charge nurse, came in to place the needle to make sure it was done right this time. I stayed this time to stand in for Child Life, who doesn't work on Saturdays. Mildred and I helped to calm Haylee and make sure she didn't get her hands in the way. Haylee did FANTASTIC!!! She whined some, more out of fear I think, but Leah was able to get it in right away because they used a longer needle. Haylee layed around while the Versed wore off. A co-worker of Adam's, William and his wife, came by to meet and visit with Haylee. She was still a little loopy but ended up coming to before they left. Haylee and William played Jenga, per his request, and 'Rock, Paper, Scissors' and before too long they were coming up with some real whoppers to win...volcanos, hurricanes, tornados, earthquakes. It was cute and Haylee just laughed. They were showing her pictures of their cats and the bird nests they have in some of their plants at home. It was a nice visit from them.
Nonna showed up around 2:15 to stay with Haylee. They were going to have a busy weekend with all the stuff that was going on there plus, they were going to make cookies for the floor.
HAPPY BIRTHDAY TO ADAM!!! HAYLEE, MASON, AND I LOVE YOU BUNCHES!!
April 12, 2012
4/11-4/12/12 - A little time apart
Wednesday, April 11
We had a MUCH better day on Wednesday. I guess the combination of the close quarters, boredom, and the simple (but awesome) fact that Haylee's feeling good can really make us crabby. I say that her feeling good is part of it because she feels fine, looks fine, acts fine and we still have to be here....waiting and waiting for counts to drop and then recover. That's why it's such a long process.
We both slept until about 9:30 Wednesday morning. I woke her up (again!) and she hung out in the room watching TV until about 11:30. I let her go play in the playroom for a little bit but she doesn't like to be out long because she hates wearing the mask. It's not because of the mask itself; it's because when she breathes some of it comes up through the top of the mask and it fogs up her glasses. She didn't have that problem during our first admission so this is all new to her. Haylee headed off to school around 12:30 until 2pm. She's doing really well keeping up with her work. I hope she's not behind at all when she starts school next year. She's extremely bright, cute as a button, and has an infectious laugh that usually wins people over. I'm sure she'll do just fine!
Haylee came back to have a late lunch then headed to the playroom for a musical performance by "Pat and David" (not sure who they were but they were entertaining and sang songs by request for the kids on our floor). They did all their songs acoustic - guitar only. They were funny, played good songs, and they kids enjoyed them. We left them to their songs after "Living on a Prayer". She was tired of wearing the mask. Nonna showed up about 6:30 to relieve us (haha!). She's off work Thursday because she has to work Saturday so I get to go home tonight until tomorrow afternoon. I'll stay here Friday night and go home Saturday afternoon then come back here Sunday afternoon. It's only like this every 3rd week, thank goodness! I can't complain - my mom is doing me a HUGE favor just by staying down here at all and I can't thank her enough :) :) :)
I'm not sure where I put her counts for today but they have come down some from yesterday. Her ANC dropped below 1000. We really want that!
Thursday, April 12
Today wasn't much different from yesterday, according to Nonna. Haylee's been sooo bored! She just kinda does her own thing. We play with her, too, but we just aren't the same as kids her own age.
I got back to the hospital around 3:30 to find Nonna and Haylee at The Voice with Danielle and Lindsay. They were downstairs meeting Erica Nicole, a country singer (I've never heard of her). We got a few t-shirts and some CDs. I haven't listened to it yet, but hopefully it's pretty good.
Nonna left around 4pm and Adam's mom and aunt came for a surprise visit around 4:45. We visited with them for about an hour, gave them a quick tour of the garden, said our goodbyes in the lobby, and then went to BINGO. Haylee looks forward to Thursday nights because of BINGO! She "won" a tickler worm, a leopard stuffed animal, and the game 'Kerplunk'. We played it a few times. She started talking smack about how she was gonna win and lost everytime. We had a good laugh about it!
CURE provided dinner for the families and staff on the floor - it was Chik-Fil-A tonight. They are too sweet to do that for us. We had baths, played on the tablet, Skyped with Daddy and Mason, and all in all had a really good night together. We laughed and acted a little silly - she loved it :)
Today's counts:
WBC - 2560 (still normal)
HGB - 12 (I do remember that's higher from yesterday)
Platelets - 106K (lower!)
ANC - 1050 (yesterday was 720)
SEGs - 41 (lower!)
All of the numbers are still in the normal range. Since the ANC is above 1000, it's considered normal (low, but normal). Her platelets and SEGs are the only things continuing to drop. Say a prayer they start to drop fast and recover even faster! :)
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| At the "Pat and David" musical performance in the playroom |
We both slept until about 9:30 Wednesday morning. I woke her up (again!) and she hung out in the room watching TV until about 11:30. I let her go play in the playroom for a little bit but she doesn't like to be out long because she hates wearing the mask. It's not because of the mask itself; it's because when she breathes some of it comes up through the top of the mask and it fogs up her glasses. She didn't have that problem during our first admission so this is all new to her. Haylee headed off to school around 12:30 until 2pm. She's doing really well keeping up with her work. I hope she's not behind at all when she starts school next year. She's extremely bright, cute as a button, and has an infectious laugh that usually wins people over. I'm sure she'll do just fine!
Haylee came back to have a late lunch then headed to the playroom for a musical performance by "Pat and David" (not sure who they were but they were entertaining and sang songs by request for the kids on our floor). They did all their songs acoustic - guitar only. They were funny, played good songs, and they kids enjoyed them. We left them to their songs after "Living on a Prayer". She was tired of wearing the mask. Nonna showed up about 6:30 to relieve us (haha!). She's off work Thursday because she has to work Saturday so I get to go home tonight until tomorrow afternoon. I'll stay here Friday night and go home Saturday afternoon then come back here Sunday afternoon. It's only like this every 3rd week, thank goodness! I can't complain - my mom is doing me a HUGE favor just by staying down here at all and I can't thank her enough :) :) :)
I'm not sure where I put her counts for today but they have come down some from yesterday. Her ANC dropped below 1000. We really want that!
Thursday, April 12
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| I'm not sure who the girl on the left is, but Erica Nicole is in the middle and Haylee Kate is on the right! |
I got back to the hospital around 3:30 to find Nonna and Haylee at The Voice with Danielle and Lindsay. They were downstairs meeting Erica Nicole, a country singer (I've never heard of her). We got a few t-shirts and some CDs. I haven't listened to it yet, but hopefully it's pretty good.
Nonna left around 4pm and Adam's mom and aunt came for a surprise visit around 4:45. We visited with them for about an hour, gave them a quick tour of the garden, said our goodbyes in the lobby, and then went to BINGO. Haylee looks forward to Thursday nights because of BINGO! She "won" a tickler worm, a leopard stuffed animal, and the game 'Kerplunk'. We played it a few times. She started talking smack about how she was gonna win and lost everytime. We had a good laugh about it!
CURE provided dinner for the families and staff on the floor - it was Chik-Fil-A tonight. They are too sweet to do that for us. We had baths, played on the tablet, Skyped with Daddy and Mason, and all in all had a really good night together. We laughed and acted a little silly - she loved it :)
Today's counts:
WBC - 2560 (still normal)
HGB - 12 (I do remember that's higher from yesterday)
Platelets - 106K (lower!)
ANC - 1050 (yesterday was 720)
SEGs - 41 (lower!)
All of the numbers are still in the normal range. Since the ANC is above 1000, it's considered normal (low, but normal). Her platelets and SEGs are the only things continuing to drop. Say a prayer they start to drop fast and recover even faster! :)
April 11, 2012
4/10/12 - Being in close quarters with someone just like you...
Well, it's been a week today since we've been inpatient and things are still going GREAT! She hasn't had any reactions or side effects to the chemo so far. It took 2 weeks our last time in for side effects to start but the effects we were looking for haven't happened so far and I'm praying they don't start! Dr. Cooper and Colleen both saw her today and said still no changes and she's looking great. The place on her arm where the PICC used to be is starting to heal up. It looked so bad, poor baby. She said it didn't hurt or itch. It just looked worse that it was. Dr. Cooper also said that they aren't going to check her triglycerides anymore for a while. He is certain that the ATRA is what makes them crazy so they are going to wait and check it again sometime after she's done taking it for this round. Counts are still going down...slowly. Haylee had to start wearing a mask every time she leaves her room. She put on one of those yellow paper masks, but Colleen said those weren't good enough so they brought her in her famous blue ones. She likes those better anyway!
The therapy dogs were supposed to come today at 10:30 but never showed up. Haylee was really bummed about that because she looks forward to them coming. Adam came to visit, we all 3 had lunch together courtesy of CURE, and she went to school from 12:30-2pm. Danielle came by and took her down to The Voice for a little while. Kim came to visit and brought Haylee back upstairs with her. We all played Yahtzee together (Haylee stomped us!) and had dinner. It was a nice visit and Kim promised to bring Skyler next time.
It's apparent Haylee's feeling good...she's exhibiting signs that she is still a normal, 9 year old girl. Those signs are (in case anybody was wondering): being chatty, having a smart mouth, talking back, attitude problems, and being whiny and pouty! Haylee and I are so much alike at her age and mine that it's scary. She acts just like me - she's me made over. I love my daughter. I would move mountains for her and gladly take her place if it meant that she was in perfect health and not having to go through all she has, is and will go through. But being in close quarters with her 24 hours a day, everyday...well, it's not always going to be peaches and cream when it comes to us getting along. We just clash hard sometimes and I hate it. She gets so bored and takes it out on me. We feel trapped sometimes and it irritates me that we only have so much we can do and so when she gets snippy, I get snippy back. We apologize to each other and then do it again later and then apologize...it's a vicious cycle. We had one of those kinds of days today. I start to feel guilty for getting irritated with her and getting onto her for things. I know days like these are going to happen and I should even expect them but it doesn't make them any easier to deal with. Even though we didn't get along all that great today, we ended it on a good note...happy and together :)
I heard a song tonight with a really good chorus. It made me think of how Adam and I felt when we first got the news about Haylee and what we've had to do to get to the point we are at in dealing with it:
"You find your faith has been lost and shaken
You take back what's been taken
Get on your knees and dig down deep
You can do what you think is impossible
Keep on believing, don't give in
It'll come and make you whole again
It always will, it always does
Love is unstoppable"
WBC - 3460 (they went up from yesterday)
HGB - 11.5
Platelets - 196K
ANC - 1450
SEGs - 42
The therapy dogs were supposed to come today at 10:30 but never showed up. Haylee was really bummed about that because she looks forward to them coming. Adam came to visit, we all 3 had lunch together courtesy of CURE, and she went to school from 12:30-2pm. Danielle came by and took her down to The Voice for a little while. Kim came to visit and brought Haylee back upstairs with her. We all played Yahtzee together (Haylee stomped us!) and had dinner. It was a nice visit and Kim promised to bring Skyler next time.
It's apparent Haylee's feeling good...she's exhibiting signs that she is still a normal, 9 year old girl. Those signs are (in case anybody was wondering): being chatty, having a smart mouth, talking back, attitude problems, and being whiny and pouty! Haylee and I are so much alike at her age and mine that it's scary. She acts just like me - she's me made over. I love my daughter. I would move mountains for her and gladly take her place if it meant that she was in perfect health and not having to go through all she has, is and will go through. But being in close quarters with her 24 hours a day, everyday...well, it's not always going to be peaches and cream when it comes to us getting along. We just clash hard sometimes and I hate it. She gets so bored and takes it out on me. We feel trapped sometimes and it irritates me that we only have so much we can do and so when she gets snippy, I get snippy back. We apologize to each other and then do it again later and then apologize...it's a vicious cycle. We had one of those kinds of days today. I start to feel guilty for getting irritated with her and getting onto her for things. I know days like these are going to happen and I should even expect them but it doesn't make them any easier to deal with. Even though we didn't get along all that great today, we ended it on a good note...happy and together :)
I heard a song tonight with a really good chorus. It made me think of how Adam and I felt when we first got the news about Haylee and what we've had to do to get to the point we are at in dealing with it:
"You find your faith has been lost and shaken
You take back what's been taken
Get on your knees and dig down deep
You can do what you think is impossible
Keep on believing, don't give in
It'll come and make you whole again
It always will, it always does
Love is unstoppable"
WBC - 3460 (they went up from yesterday)
HGB - 11.5
Platelets - 196K
ANC - 1450
SEGs - 42
April 9, 2012
4/9/12 - A slow day
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| Getting ready to 'tye-dye' in the playroom |
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| All ready to make it smudge! |
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| The finished product :) |
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| Playing a little soccer in the garden |
Haylee is STILL doing awesome! She had a good night - stayed up a little too late but slept until 9am to make up for it. Dr. Cooper came by to check on her and said she was looking great. I asked him about her triglycerides going up and down and he said he thought the ATRA was what was affecting it. Go figure...the ATRA has been affecting her this whole time. First, mouth sores (that was also the first round of chemo causing it as well), then the whole 'fake tumor' thing and putting pressure on her eyes, now her cholesterol is like a yo-yo. He said once she was in maintenance and when the ATRA is over she will get back to normal. For now, as long as the side effects of it can be fixed or maintained it's just something we have to deal with. The ATRA is important for her treatment...she needs it.
Haylee went to school this morning and is still doing well with her academics. PawPaw, Adam, and Mason came down for a visit today. Mason got a little comfortable on Sunday so he was all over the place today. We had lunch in the cafe with PawPaw, then went to hang out in the garden. She was trying to be sneaky and hide from us. She wasn't sneaky...I snuck up on her!
We went back upstairs after seeing PawPaw off to have her port dressing changed. Normally, it doesn't have to be changed, just taken off once it's de-accessed. Since the dressing was still the one from the surgery, her nurses changed it so it would be clean. Since her counts are dropping and she will practically have no immune system, they wanted to take away anything that would cause infection. Brittany from Child Life came in and distracted her with the Ipad while it was being done. She did awesome and almost doesn't need Child Life as a distraction anymore, but she loves having them there. Colleen came by to check on her. No changes and they are happy with her progress. She said Haylee should probably start wearing a mask when she leaves her room since her counts are almost at the point where she can't fight infections anymore.
Brittany came to get Haylee around 4pm to do a 'tye-dye' project in the playroom with some of the other kids from the floor. It wasn't your typical tye-dye. They used sharpie markers and rubbing alcohol. It worked really well! She made a pillowcase since all the t-shirts were taken.
After the tye-dying, we had dinner then went down to the garden and kicked the soccer ball around. After a while, she just dribbled it around herself then went off in search of squirrels (she thinks she can catch one!). We came back, had baths, skyped with Daddy and Mason, and watched 'Frenemies' on Disney. We did (and do!) the best we could to stay busy. Its like my dad said...time sort of slows down while we are here.
WBC - 2810
HGB - 12.3 (it actually went up 0.1 - maybe she won't have to have any transfusions this time around!)
Platelets - 228K
ANC - 1630
SEGs - 58
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