Wednesday, September 28, 2011

Ups and Downs

Today was kind of rough. I tried to handle both kids most of the day. I had help for a few hours. I wanted to be independent again. I wanted to do it on my own. Tonight I decided that I like the help that I have. I just hate feeling like I am "taking advantage" of the people I have. It sure does make her happier when she has her loved ones around.

As part of her "normal life", Pizza Factory had to be included. She was excited to go. I almost didn't let her go because we were having NUMEROUS meltdowns. These weren't screaming ones...more like heartbroken crying ones. She was also being kind of mean. She was directing it towards Slade, then me, Grammy and then Tavia. I don't think that is ok, and I guess you could say I was losing patience towards the end of the day. However, we made it there. We did have one meltdown while we were there and I didn't love her attitude. After a few more days, I am going to try my best to get her back on schedule/discipline.



Lately she is obsessed with sour things, saying things are disgusting and telling people they pooped in their pants (yes I did write that cause she really does that). She enjoyed a pickle and made her "sour face".



It felt good to be "normal" with her. It felt good to get out and I think she felt the same way. Hoping to keep her going and happy the next few days. She was much more active today and was hardly carried. She was also running a little bit. I can still tell that her walk is not all the way back to normal but it is getting there.


I was thinking that her cheeks had gone down a lot, but then I looked at this pic and her face is still chubby. It is so cute though. Love that double chin... hers and mine :)




Hoping these steroids wear off sooner than later because my patience feels like it is wearing off too fast.

Just the Way You Are

I can't get this video from youtube. It is from Kate's phone as the boys were practicing their song for the benefit. So cute! I just had to paste it on here.
http://www.youtube.com/watch?v=N2oNHQ7hjSI&feature=share

She loves it if you can't tell.

I can't wait to get the video from the concert so all of those who couldn't make it can see how amazing everyone was!!

Tuesday, September 27, 2011

Big Day (Continued)

Waiting for that phone call and your name to be called in the waiting room=torture. I sat there praying/hoping that everything is going ok with my little one. When I finally heard my name, I raced back to recovery. She was groggy, but was still whining for mommy (which I haven't heard a lot of lately). I hate seeing her like that...ESPECIALLY after being intubated. She has a barky cough and scratchy throat. We stayed in the PACU until her numbers looked ok and then headed to recovery. She had a fever at that point and I was terrified. I prayed that it was just a reaction to anesthesia and that it would go down. I was told we had to wait until her vitals looked ok, she drank 2ml's and was "awake". I let her sleep and she was probably exhausted. I ended up liking the position of the port. It was lower than I thought and looks like it will be right where her bra strap is. We were pressed for time, she drank and her numbers were ok so the nurse said we could "wake" her up to head upstairs to clinic.







Going to clinic was stressful... maybe because I knew we had to take the PICC out up there and I didn't know what to expect. She didn't want to be there...and neither did I. We did vitals, spoke with the PA, had the nurse come in and do a blood draw (needed numbers to be ok before the we pulled the PICC). Apparently it wasn't STAT because we waited for 1 hour for the blood results...only to find out her blood had clotted. At this point, we were needing to be gone to make it home for the benefit concert. They ran it STAT this time and we decided she was probably fine and to go ahead and pull it. It wasn't as bad as I thought. She screamed but she did great. Dr. Barnett informed me that if her numbers looked good (which we find out on Thur/Fri) then she would be "Standard Risk". Just for background.. when she was diagnosed her peripheral blood was 60% leukemia cells and her bone marrow was 90% leukemia cells. On day 8, there was no sign of leukemia in the blood and bone marrow aspiration showed her cells to be at 0.01%. So PRAYING that her numbers only got better to show NO sign of leukemia (be in "remission"). That way we continue as normal with treatment as standard risk. I am not sure what I will do if it doesn't come back that way...oh the anxiety. He seemed pleased with her progress so that's a plus! They said they would call me with her labs. We headed on our way.



She seemed excited to go home. She asked lots of questions as she always does.




Too bad those dang steroids haven't seemed to wear off. He said to give it at least 5 days... oh man. Still having meltdowns. Not eating as much. Still having random cravings, but I can sometimes distract away from certain things when there was no way before.



She slept a good portion of the way home. Yay. That always makes the ride home a little better. We were pressed for time and hoping we would make it in time for the concert.





The concert...it was so amazing. Everyone did a great job performing. Tavia did a great job putting it together. Everyone that helped was awesome. I can't even tell you the feeling I got when I drove up to the high school and saw all of the cars (yes we were 5 min late). I had an instant feeling of love and gratitude. I couldn't believe it. When I walked in, I can honestly say that I was overwhelmed in so many ways. A good overhwelmed...anxious...loved...nervous... humbled. This community has done for us than I would have ever thought. Not that I didn't think there were "good people", but the compassion and generosity that has been shown is above and beyond what is needed. The donations are unbelievable...not that I am most concerned about medical bills..because Taleah is so much more important. However, in the back of my mind I am constantly thinking about the cost of every little thing. Again, I will never know all of the people that donated time, work or even showed up to show their support. I wish there was a way to thank every single person. It was kind of a blur after the concert. I was running on little sleep...emotionally and physically exhausted. Slade was crying because he was tired. Taleah was whining/crying to leave. I wanted to talk to every person, but there was no way. I feel like there is so much more to say about the concert, but thank you is what I want to say the most. THANK YOU!





Taleah is asking SO many questions. It is getting tricky to answer them "correctly".


Examples...


- Where is the "kemia". (I told her in her body)


- How did the "kemia" get in my body? (didn't have a great answer cause I don't know)


- Why did my port get sick? (I told her they took it out to fix it like they fix her)


-Why doesn't Chloe have "kemia"? (I told her she was special like Chase and Mathew)


-Why is there blood by my new port? (I told her from surgery but it's dry now)...she then told me that it was cool and blood is red and she likes red


There are so many more and I can tell her little wheels are turning. She is trying to figure this out. Still not what a 2 year old should be asking questions about, but it's her new life so some extra knowledge can't hurt.





Her counts came back pretty good. Going off memory...


ANC 4700


WBC 6.1


Hct 28.2


Plts 220,000


32 lbs(up 3 pounds from diagnosis)


(I am going to put what they mean and ranges on my next post)





Dr. Barnett instructed us to let her be normal this week. Her counts are good. She should start feeling better and enjoy the next few days before we start the next phase (hopefully next Monday if her ANC is above 750 and platelets above 65,000). I am going to let her do all of her favorite things. I can't wait.





I just have to say that I can't help but to be SO nervous about the results. I just read that a little girl that was considered "low risk" just had her post induction consult and found out that she is actually now "high risk" and that will change a lot of things. Reading that made my heart sink for her...and then thought about our situation. I am hoping for good news so much... and so were they..and they kind of expected it... like us... but they didn't get it. I feel like it is taking over my thoughts. I have got to figure out a way to not live in constant anxiety. I can't help but think (sometimes) that a good day...or good moment is preparing me for something bad. I know it's terrible to say/write. Just really how I feel. I better just think positive and enjoy every second. It's all out of my hands. I have so much to enjoy and be thankful for.

Monday, September 26, 2011

Big Day

We drove up to SLC on Sunday evening. We left at 4pm, she slept from 4-7:30pm, we arrived in Draper at 8pm. We stopped at noodles & company to get some dinner. We went into the bathroom because she had to go to potty right then. I took off her diaper and lined the toilet with a cover...she apparently didn't like that at all. She started screaming at the top of her lungs. I couldn't get her to stop. She then started peeing all over the floor... a ton.... there was nothing I could do. And there were no paper towels in the bathroom...figures. I called out to my mom to get her help. Now she was stadning in a puddle of pee, screaming and wanting nothing to do with me. Awesome. Even though we aren't "taking steroids", we are feeling them more than ever. Ahhh. SHe ended up calming down and was in total heaven when we arrived at Treena's. She played and played, then ate and played and ate some more. Kind of comical when she eats something that itsn't her "norm" at home because my mom and I hold our breath to see if she accepts or is going to freak out. Funny...but not. So stressful. Especially when you are at someone else's house trying to avoide the major meltdowns. When I was convincing her to go to bed she said to me, "If I wake up, where I gonna go?" I was speechless. I said, "In the car." She then replied, "Where we gonna go in the car?" She is too smart and I think she knew, but I just avoided the question and changed the subject. She would have had anxiety all night and not gone to sleep.

She ended up going to bed at 11:45. She slept ok and didn't wake up when we did her antibiotics. She wasn't thrilled when I woke her up, but she didn't freak. I think she may have known that she had no choice. We arrived, waited, waited and waited. I had some questions about the port and where they were going to place it. They informed me that they weren't going to take out the PICC line in the OR and were going to leave it in for some blood draws in clinic. I wasn't thrilled but oh well. Along with that, I didn't know where they would put it because it was on the left side last time and she has the PICC in the right. I guess I am not the doctor and they know what they are doing.

Here I am, in the waiting room again. Waiting for the news...with all of the anxious parents. Seems like I have done this a lot... 4 times in the last month. Sucks. Prayers, prayers, prayers. She will do great I just know it!

Saturday, September 24, 2011

Day 28

She pretty much wanted nothing to do with me today. Anytime I tried to talk to her, looked at her...or was even in the room she yelled at me. Again, I want to blame it on the steroids. She wasn't as happy today unless she was with certain people. This month has been all about keeping her happy and doing whatever it takes. Some think it's crazy, but until you experience it first hand...it's crazy not to give them what they want. I fully plan on implementing a schedule/discipline once the steroids wear off. I will probably give it 5 days. Nothing crazy but some routine/schedule in her life will be great again.

She slept at the Stevenson's last night and tonight she is staying at my parents. I hate feeling like I am not being her mommy, but I stick around as long as I can and then let her go to sleep with them. They are all willing to wake up to do the antibiotics and deal with the night time meltdowns. I wish she would want to sleep at home. I wish she wanted me. But she doesn't...and hasn't for this last week espcially. Still breaks my heart...makes me feel inadequate. BUT it's all about her and what is making her happy at this point.

Scott just took her last dose of steroids (for a while) over to my parents. Oh my heck! I can't believe we made it through the first 28 days. It seems like it's been FOREVER. And I even had help from family. Now if we can just make it through Monday with no hiccups that would be even better.

Side Note... She told me, "Mom, I have a baby in my tummy! Look (as she lifted up her shirt), it's a big baby!!" I laughed so hard. Too funny.

Brielle (her cousin) said, " I love Tia's big cheeks. She has big cheeks."

I have been trying to slide in a few comments about the hair and Leukemia. She isn't getting it and I am not sure she likes the idea of it. She is shedding a lot. It still looks like she has quite a bit, but it's coming fast. I am hoping to make it last until next weekend so we can have family picures taken....hope we can make it work. If not, oh well! After pictures I think we will cut it short and then maybe buzz it... not entirely sure yet. I will keep talking to her and see if she can make a decision...oh the thought makes my tummy hurt.

Friday, September 23, 2011

Day 27

First off, let's just say that Heavenly Father answers prayers. After calling and being the crazy mom that I said I would never be, I waited for the phone call determining if we could be bumped up in the OR. I decided to hop in the shower while I had he chance and I missed the call. I was so nervous to listen to the voicemail. When I did, I cried. Good tears... they were able to get us at 8:15am. When I called back, I thanked the girl that I had originally talked to. I didn't ask how or why. I just accepted and felt so thankful. I know things happen for a reason and I am hoping that things will go smoothly on Monday so we can make it back. She won't have to fast near as long and we will make it back in time for the benefit concert. It might sound silly to some, but there has been a lot of time and love put into this concert by our loved ones. It really means a lot that I will hopefully be able to be there. I am not sure what we will do with Taleah... probably depends on her counts (Mon) and how she is feeling. Yay! Feels good to get some good news.




I decided that she needed to perform at the game with the cheer clinic girls. She loves to dance. She missed the clinic this week (which I was feeling sorry for her and mad that she couldn't go). She got some private lessons the day of the game (Abby and Tavia). Taleah tried to follow along and I had to capture the video because it was too cute. It is harder than usual for her to move around due to the added weight. She still rocked it.


video




After she was informed of what she got to do, she was more than excited. A nap was out of the question. She wanted to go right then, but we still had 3 hours. I convinced her to lay and watch a movie for 30 min, but the game was all she could talk about. I even talked her into having a bath (which is a battle lately because she is paranoid of getting her PICC line wet). She was SO excited and ready to go.


(only a few meltdowns in the process)





We talked to the athletic director and they said we could sit inside the fence, on the track, behind the goal posts. That way we wouldn't have to be by any people, but we could still watch daddy coach and watch the game. She was a little upset at first when we didn't sit in our usual bleacher spots, but I told her there were too many germs up there. She asked a few more times but I think she finally understood or accepted it.


The actual performance was darling. I had tears in my eyes. Silly because she only stood there with my sister, watched the other girls and did 1 kick with her leg. She didn't cry and had a few half smiles. But I still ad tears in my eyes. I feel like I see things in a whole different light now.


She didn't want to leave the game. I think she was in heaven being surrounded by people, but not anyone close. Having people to watch/entertain. Feeling somewhat normal.



The football boys are so sweet. They all have stickers on their helmets that say TS (Taleah Stevenson). They love her. They loved her before she was diagnosed. A lot of their "pep talks" have had her name in them. Ty scored a touchdown right in front of us...he pointed at Taleah and blew her a kiss. She LOVED it. She thought it was the greatest thing. I cried again. So sweet. I haven't been that emotional lately, but some of the simplest things mean more than they ever would have before this.


Tomorrow is the last day of steroids! YAY!!!

Kind of Depressed...

I have been hoping/praying all week that we could have an early OR time. For lots of reasons.... so she didn't have to fast for very long and so we could make it home in time for the benefit concert. I want to be at the concert REALLY bad. All of the hard work/time/money spent to put it on and I may not be able to go.

I just got a phone call saying the preliminary schedule has her at 12:15 in the OR. I was so so sad when they said that. They said that there was nothing earlier. She is that Dr.'s first patient of the day. He doesn't have a room in the OR until then. Talk about disappointed. I turned into a crazy/annoying mom and called to see if there was ANYTHING they could do considering our situation (which I am sure there are a lot of people in the same boat). She said she would see if there was a way to get us earlier. Who knows. Now I will just wait. Oh I hope so bad that there is something that can be done.

If not, we thought about leaving her with Aunt Grammy that night and flying back, but we may not even be able to make that plane time (4:50pm). Ahhh. I hope something works out. Living 5 hours away is really a problem. Dang. Hope they find a way. :)

Thursday, September 22, 2011

Day 26

She slept at my parents last night. They said she really did great this time. My mom said they didn't actually fall asleep until 11pm because Taleah just layed there and was chatting with her for quite some time. I can imagine that deep down she probably loved that. It's almost as if our parents have become young parents again. We feel so lucky that are willing to help out so much. They are the kind of parents that we hope to be. They sacrifice time, money, sleep and so much more to help us however they can. It makes this that much easier.

She had a pretty good day. She (and Slade) were with my parents until 12pm while I worked at the hospital. We had a dressing change with nurse Jeanette. She cried.. a lot. Jeanette thought she did great though...maybe cause we didn't have to hold her down. Still broke my heart when she cries and says, "No Mommy, please Mommy." I am not sure if that gets any easier.

She had a play date with Chloe for about an hour. We figured that her counts were high enough that Chloe could come inside. They played kitchen and ate food on the front steps. It was pretty funny because we kept making them sanitize every 5 minutes. They both fell in love with the wipes that a sweet family sent us. They both ended up carrying multiple wipes around...wiping down the toys they touched, their hands, feet, ect. We laughed and thought that it was the perfect play date. Not your typical play date, but the kind that will become typical around here.

She initially said she wanted to sleep at home tonight, but ended up choosing the Stevensons. I wonder if she will ever want to sleep here again. After the steroids... I keep telling myself that!

The anxiety is getting worse as Monday is getting closer. I am not sure if I will live the rest of my life like this...anxiously awaiting each check up, RTU visit, surgery, results...can't be healthy. Maybe time... let's hope.

We will just keep praying...pretty much all we can control.

Together for Taleah Benefit Concert

Together for Taleah Benefit Concert this coming Monday September 26th at 8:00 p.m. at Desert Hills High School in St. George Utah ($3/person). Some dance numbers and vocal numbers, it should be a great night together as family and friends. Thanks for all the love, support, and continued prayers.

Wednesday, September 21, 2011

Day 25

She slept at the Stevenson's last night. She didn't want to be home.. again. Sad for me. But maybe good for me to catch up on some sleep. Again, I don't know how you would do this without family. They are the best. They said she was awesome and did not wake up once!!! I can't believe it. That is the first night since diagnosis. She was pretty happy today too... must be because of a good nights sleep. They dropped her off to me at home and I was nervous about the way she would react, but she was fine. We played kitchen, went on a walk, put Slade down for a nap while we played bubbles and got ready to go to Grammy's. She wanted to watch a movie while I attempted to do her hair. Kind of selfish on my part but I wanted to do it cute while I still can...one of my guilty pleasures. She only let me get to the braid and then she was done. Oh well. Turns out she found the yoga DVD and wanted to watch that...so I put it in. She cracks me up. She started doing yoga with the DVD. Most days (since diagnosis) she wouldn't have the strength, but man she was working it out!










It was so nice to see a glimpse of her real personality. And for most of the day. I LOVED it! There were a few moments when she didn't want me around, but for the most part I was able to spend the day with her and laugh. She asked me to video her while she danced to Teeny's cheer dance. I was thrilled because we used to do that all of the time, but we haven't since she was diagnosed. She was walking and ready to dance. I was shocked. She also loves to sing...oh and not songs like most 2 year olds...she learns songs from my teenage sisters. Pretty funny when she sings them though. Some parents wouldn't be very proud, but I am. Watching her dance, smile and sing her little heart out makes my day!


video




video



I would consider today a pretty good day. Only a few meltdowns. No major ones. Hoping that she doesn't suffer tonight because of it. A few more days of steroids...we can do this.


Praying, praying, praying that things go well for Monday. Praying that we get an early OR time so that we can make it home for the benefit concert that night. Praying that she does well being intubated. Praying that her counts look ok. Praying that her infection is totally gone. Praying that the results from Monday show that her Leukemia is gone (it is supposed to). Praying that she will continue to be standard risk.


Lots of praying...

Day 24

She spent the night at my parents house due to the fact that she doesn't want to come home. Still working on that one. She did ok, other than the fact that she had a meltdown at 1:30am and there was nothing they could do to calm her down. I feel terrible that they had to deal with that. She then slept on the couch and couldn't get comfortable. I think she was in a lot of pain. So sad.

I worked my first full day at work. It was wierd being there, but good. I was exhausted by the end of the day. My mom and dad had both kids. They said Taleah was happy all day. Laughing, joking and smiling (where these pics came from). She was entertained by Tavian and Jace, Tay Tay, Trevy and Kate, Grammy, Gramps and Teeny. Spoiled...I think so.


pics with their "smart glasses"


Maiking cookies... fav thing to do at Grammy's




She was asleep when I got home. When she woke up, she had a meltdown. After my mom walked in the door, she cried for her and stopped. Slight punch to my heart, but at least she was happy. I then asked if she wanted to come home and she freaked out. She cried for about 30 minutes and then I asked if she wanted me to leave and she said, "yes". Another punch to my heart, but I took Slade home and called to check up on her and she was fine. Laughing, smiling, ect. Awesome. She doesn't like me. She used to love me and love being with me. Now she hates being with me and hates being home. I can take it cause it's not about me, it's whatever makes her happy at this point. I keep trying to tell myself it is the steroids. I really hope it is.


Her hair is really starting to thin. I can't decide if I should cut it short and then buzz it when it starts falling out... I still haven't found a way to talk to her about it. It's just so hard because her hair is "her thing". Everyone loves her hair and so does she. It's part of who she is. I am sure she will understand if I could ever find a good way to explain it to her. It sounds so shallow when I read back this paragraph. Hair is nothing in the big scheme of things.


Again, I am overwhelmed at the support. It is so nice to keep reminding myself that there are good people in the world. There really are. It seems like so much is focused on the negative and this has really brought out the positive things in life. Not that I am always positive, but it gives me some additional hope.

Monday, September 19, 2011

Day 23

Taleah had a sleepover at the Stevensons. They said she was great. Woke up to potty at 1am, medicine and eating at 2am and then Grandpa woke them up at 7am to get ready for the day. I showed up and she was happily eating cafe rio and had taken her medicine. (I didn't have to do it.. yay!)


We got dressed and headed for Marsden's office. She cried when I told her where we were going. Once we were, there she did pretty well. Then I told her we had to head over and see nurse Heather and she cried again. Once we were there, she did pretty well. She did have a minor meltdown over crackers and cheese. Food is taken very seriously and must be just right! She did love nurse Heather though. She talked about her quite a bit once we left. :)







The Vincristine went well. Only took about 15 minutes to infuse. Here are some of the stats.


Weight 34.5 pounds (gain of 4.5 pounds)


WBC 6.9


Hct 24.4 (pretty low...need to watch)


Plts 301 (almost doubled)


ANC 2800 (highest since diagnosis)




Taleah wanted Slade to match her. Bracelet on one arm and pink bandage on the other. I guess she didn't want him to be left out. Glad he is a good sport!




I have to take the happy moments when I can take them. I seem to always put the "happy" pictures on here, but there are not so happy times. I am just trying to embrace the good times and remember those. However, I will be real.... some moments I want to rip my hair out, cry or just punch something. I know it's not her, but I want my baby girl back. That being said, she still has a sense of humor and I love it. She is obsessed with people being stinky. :) Just ask those who are constantly referred to as "stinky" (Tavia, Jace, Tanner, Tay Tay, Izzy, Trevy, ect).

She has been wanting to hold him. He is almost as big as her. They are both chunky and I love it. Her cheeks and double chin are hilarious. LOVE IT! Pretty much to get a picture of them both smiling. Too cute though.


She still has no desire to go home. I think she spent a total of 2 hours at our house yesterday. I can't figure out why she never wants to be here. I am not sure if it's the fact that the ambulance picked us up here and spent some time inside the house..and the nurses come here... and we have had some rough moments. I can't pin point the problem, but just doing my best to keep her happy. What a challenge that is!

Sunday, September 18, 2011

Day 22

She has done fairly well today. We had a major meltdown when she woke up. The kind where nothing I do is right and she is screaming/crying and upset over every little thing. I ended up giving her a half dose of Benadryl at 3am last night and it helped her sleep uniterrupted until 8:15. Her poor little legs are really hurting her. She barely walks anymore and to get up and down is a task for her.

Scott let me sleep today. A lot. He took the kids to his parents and then mine for most of the day. I was able to have 10:30am-5pm to myself. I kind of felt guilty, but then decided that I had to sleep in order to stay sane. If I want to be a good mom and take care of these kiddos I need some sleep. It felt AMAZING! I don't know what we would do without our families. They are the best ever. They sacrifice so much for us. Honestly, I don't think we could do this without them.



She loves to laugh (when she feels like it). It is the cutest thing because she copies whoever she is laughing with. Kate caught this pic(with her phone) mid-laughter and I love it!!



She loves being surrounded by people right now, but usually only a few at a time. As long as she is laughing/happy I am good. It's when she is crying or in pain that I get major anxiety.




After talking to some people about this whole "plan" thing, I started thinking about life. I realized that Heavenly Father has a plan for us. He has a plan for Taleah. She was chosen to endure this trial because she is strong. He wouldn't have her go through this if she couldn't handle it. Says a lot about this little one. He knows what we can handle and I know that it won't be easy. I know that it is going to be hard in so many ways, but I have faith that Heavenly Father will help us through. I think it is that way for all little kids who go through things similar to this. I am constantly amazed at these kids that I meet and the strength they have. They were chosen because they are strong. And I am lucky enough to be her mom.




Side Note... Tavia was playing doctor with her. Jace was pretending to be asleep and they were checking him out. Listening to his back, his heart, taking blood pressure and then Taleah asked Tavia, "Is it cancer? Does he have cancer?" Most 2 year olds would not even play doctor nor ask if it's cancer. She is learning a lot. Keeping her informed!

Also.... she told me today that she would share her "tubie mecinine" with Chloe. I told her that Chloe didn't have a tubie. She said, "Chloe doesn't have "kemia", only I do. Oh and Mathew too!" I then informed her that lots of little kids do and reminded her about Chase. She liked that answer and kept asking about the other kids.


We get to do our chemo here tomorrow. We are headed to Marsden's office first and then over to peds floor to get the Vincristine. Hope it goes well!!

Saturday, September 17, 2011

Day 21

One more day down. It's been an emotional roller coaster for her and I both today. Last night was rough... really rough and I think it made a bad start for the day. Another freak out in the middle of the night... requesting Life cereal in a cup, then a bowl and then a cup again, pizza, cheetos (but not the kind we had of course), apple juice, water (with ice), ect. Scott and I both were both moving trying to get things in order but it wasn't good enough. She wanted me to sit on the bed and then get off. She had me strip all blankets, sheets and animals off of her bed. It was exhausting. I also got up at 5:45 to run since we have decided to go ahead and run the marathon (or walk really). Let's just say that going on 4 hours of sleep... 3 weeks in a row is getting to me. I may become a crazy person very soon.

The car wash... wow. I don't even know where to start. It was unbelievable. Seriously. So many people donated time, money and hard work for our family... yet again. I wish so bad that there was a way to repay everyone. Thank you family/friends.

Another life lesson learned for me. I guess I (before now) stuck mostly to the people I knew, had my routine and did my own thing. I would reach out occasionally, but not a lot. I probably had some preconceived notions of people only because I didn't really "know" them. Throughout this process (3 short/long weeks), I have learned that there are SO many good people in this world. I seem to always hear bad things and bad people... well I could go on and on about so many good things that people have done. I could go on and on listing good people. It's nice to see that everyone just wants the best for each other... even though sometimes we all get caught up in our own lives. I am totally guilty of that.

Taleah is doing pretty well. These steroids might just do me (and her) in. They are tough. I have moments of thinking that I can't be patient for one more second. I have moments of wanting to freak out or cry. She does freak out and cry... a lot. It seems to be more with me or at home. Not sure why. I kind of feel like I am on the steroids too. Only 7 more days of steroids. She can do this. I can do this. Her poor little cheeks may not be able to stretch any further, but I know they will keep on going. I think she has gained 4 pounds at this point. We will find out for sure on Mon morning when we go for the Vincristine down here.

I am feeling ok about things again. It's not saying that I won't be mad/sad tomorrow. Today I felt like we could go this. Last week I felt like the "plan" of this Leukemia treatment I had finally accepted was ruined when she got the infection and had to get the port removed. That was not in my binder that I received or my calendar either. I was all set to follow the plan and then things didn't go according to "plan". After being up there and surviving another week as an inpatient, I figured out that we will probably be inpatients again. I figured out that for as many "mix-ups" occur in the "plan".... there is always another "plan" to get back to the main "plan". Sounds silly. At least they have a plan of action for things that do happen. So far I haven't been the "first" of any of our "mix-ups". I will take that for today and try and embrace it.

Things happen for a reason.

I feel grateful to have learned some lessons already... 3 weeks exactly since diagnosis.

Friday, September 16, 2011

Day 20

It's been an alright day. She was pretty happy for the majority of the day. It's always rough when she wakes up. She headed to Grammy's for the morning, requested special visitors for lunch and played and played. I was able to get some cleaning done and go through mail that seemed to pile up over the last 2 weeks. Made a run to Wal-Mart which turned out to be a disaster. One thing after another... couldn't wait for that trip to end (didn't take Taleah). The kids napped at the same time so I was able to lay down for a minute with Taleah. That was also much needed due to the serious bags under my eyes (and I am not kidding).


After the nap is when it all changed... I didn't mean to wake her up and I am sorry that I did. She woke up VERY upset/crying. I held her and tried to console her without waking up her brother (which did not happen). I don't think she was fully awake. She then peed all over me and her. Luckily Grandma Stevenson was here. She then requested a pickle from Jimmy Johns (like the one Chloe brought her). We got in the car to pick one up and I gave them strict instructions to cut it just like Chloe's. We get home and go on the steps to eat it and she FREAKS out. She didn't want it cut. She was seriously having a melt down. I was trying to talk to her and talk through it, but she started screaming (we are on our front steps) and pushing me away. A few neighbors poked their heads out. I didn't know what to do. I was on the verge of tears and felt extremely helpless at that moment. I couldn't console her, she wanted me but she didn't want me. Right at that moment, a ward memeber dropped off dinner. She probably thought I was crazy. It took about 30 minutes to get her calmed down (by asking grandpa to drop a new one off that WASN'T cut). When the pickle arrived, I was able to sneak out to the game.




This boy has been a trooper. I couldn't ask for a better baby. Seriously. Love him!






Our cheerleaders were performing at the Pine View vs. Desert Hills game. My team was so cute and ordered Team Taleah t-shirts. They were SO cute. I appreciate their support so much. What a great group of girls.





I was having a little bit of social anxiety again. This is so different for me. Everyone was very sweet but I felt totally out of my element (which usually is my element). I was overwhelmed with the love and support that people were showing. Seeing people wearing her bracelets. Seeing the Desert Hills football boys that Scott coaches play hard and telling Scott it is for Taleah. Listening to the announcer talk about the car wash fundraiser that someone is doing for us. All of it was amazing. Honestly, there were moments in between all of that when I was feeling sorry for Taleah and myself. Dumb. I kept thinking that she should be here. She should be watching my cheerleaders and her daddy coach. She should be wearing her Raglan t-shirt. She shouldn't have to stay in our house with limited people. Sounds like a lot of pity thoughts in between all of the good thoughts... kind of was. Just how I feel.


When I get home, Taleah had been entertained by grandma and grandpa stevenson. They were nice enough to let me feel normal for a minute. She was ready for bed. I asked her to pray because she hasn't said a prayer since she was diagnosed. She didn't want to, but I told her I would keep her bedroom door open if she would pray. Her prayer was priceless. I helped her a little, but it was the sweetest thing and just what I needed to hear. Simple and sweet. She was thankful for blessings, playing with g&g stevenson, blessing to fight her "kemia", blessing to be healthy, blessing her brother, ect. My heart melted right there. Amongst it all, she was thanking Heavenly Father for the little things. Another lesson for me. She is teaching me so much. What an amazing little girl... I guess I can say that because I am her mom.


8 more days of steroids.


Yay!

Thursday, September 15, 2011

Day 19

First night home... great. Sleeping in my own bed...great.


I had to give her antibiotics at 2am, so we went into the kitchen so she could eat while it infused over 30 minutes. Slade woke up at 4am so I rushed in to feed him so he didn't wake Taleah. I woke up for work around 7am and both kids were awake at 8am when I left. My mom was there to take care of them while Scott got ready for work. I worked from 8-12 and it was good to be there. A good break but I stressed about the kids the whole time. Stress is a new part of my life...well it always has been but I am stressing about things that really matter now. We had to be home right at 12 because she had to have the dressing changed on her PICC line. She cried the whole time she was doing it, but I think from the anxiety of it all.



She and I had some alone time after and it was great. We ate lunch, took pictures and played.

(her cheeks are the cutest)






She was ready for Slade to come home. She loves having him around and misses him when he is gone... until he gets home and she realizes that I have to give them both my time (which has been a challenge).



Chloe was stopping by to give her a surprise (and a sandwich). We were having our first playdate which consisted of outside playing, distance between them, no touching and no sharing toys. Does that count as a playdate? It did for Taleah and she LOVED it. I think it made her feel normal for a minute. Other than that leg pain, she got so excited when she heard them and ran to the door her legs just gave out and she fell. I almost cried. I think that is supposed to get better after the steroids...I hope so. She struggles to walk on her own and wants to be carried. So sad.



Despite all of the crap, crap and more crap... she has been pretty happy. What a strong girl. She amazes me. I am so lucky to be her mama.


I am struggling a little bit to find some normalcy in my life. My life and thoughts are consumed with her and this battle with Leukemia. It's almost like I get social anxiety sometimes. I am a social person so it is kind of wierd. Leaving Slade has been hard. I don't want to feel like I am choosing. I want to be there for both of them... and Scott. I want to be able to do it all but I know I can't. I have learned to accept help and the help has been more than great. I feel like being home alone with both kids is challenging. I can't give them both the undivided attention that they want. I wish so badly I could. I am not trying to sound like a negative person but this is hard. I have got to find a way to take care of myself too. I can't afford to get sick or run down. I have to hold it together and be healthy/strong. Wish there was a prescription for that!!



She loves her bracelet. She says it's her "leukemia bracelet". I love this girl.


Hoping to stay home until our next visit at PCMC. We will get chemo in STG on Monday and then head up the next Monday for the big day. My sister is putting together a benefit concert for Taleah. I don't know a lot of what's going to be happening, but I know it is going to special. I am PRAYING that we will make it back. It is the same day of her "big day". It will totally depend on the OR and how many emergencies they have in the morning that will "bump us" to a later time. If only we could fly home, but I am thinking that an airplane would be the WORST place to have her with all of the people and germs. Scott should have been a pilot with his own plane... that would come in handy right about now! :)


We are learning a lot already. I do see small blessings and lessons already. Scott's new job, life lessons, selling our car, finding a new car that will be great for our fam/needs, family coming together, the love of God being felt, service, service and more service. We will get through this... I know we will.




Day 18

The night wasn't too bad because she was able to eat at 2am because she wasn't scheduled until 10am for the PICC line (which she had to fast for). We gave her benadryl to try and get her to sleep as long as possible. I was hoping for 9am and had worked it out with the nurses to leave us alone after 6am. However, leave it to the infectious disease resident to come in at 8:30. I begged him to not wake her up. He comes to my side of the bed to check his "questions off of the list". We luckily keep her asleep until he says, "Ok, I need to get a quick listen". She hates that the most out of anything... and she was asleep. I knew she was going to wake up. He pretty much did even though I asked him not to for fear she would wake up... and she did but while screaming too. Thank you resident. I'm all about a teaching hospital, but can we not do teaching not on a 2 year old while she is fasting.... on steroids..? Luckily, she fell back asleep until Dr. Verma came in. She doesn't have a quiet voice. It was then that Taleah was requesting food. I knew I could hold her off until 10am. Our nurse got a call that we were bumped to 10:30... and then another that it would be 11:00...and then 11:15. I wanted to freak out. Poor Taleah was STARVING. It took everything from me and my mom to keep her distracted and even then she wasn't. She kept asking me to find the doctor to ask if she could eat and go home.


We found Mathew... yay!! We played for over an hour to help pass the time. She says," He has leukemia like me". So cute.



We finally made it down to Radiology for the PICC line about 11:45. Leaving her on another table to be sedated was just about more than I could take. She was heartbroken and knew exactly what was happening. It felt all too famliar and too frequent to be happening again. I didn't have to leave her side until she was "out". The PICC went great and we knew it meant we were that much closer to going home. YAY! We packed up and headed on our way.




The drive home was not great. She wanted out and wanted to be home. She did sleep for half of the time. She also complained of leg pain. The docs kept asking me if she was experiencing that yet but I told them no. Now she does and I can totally tell a difference.



She was more than happy to be home. I can tell she is more relaxed and not on edge because she doesn't have to worry about anyone coming through the door. She pretended to color Tavia's hair, played pretend, ate good food and laughed a lot. I LOVED it!! It has been more than great to hear her little laugh.


I will say walking in that door and seeing Slade's reaction ripped my heart in half. He saw me and immediately burst into tears reaching for me. The saddest, heartbroken cry. Made me feel horrible that I left him for pretty much a week.





She is not entirely herself, but more and more of herself has been coming through and it is a little piece of heaven in my life.


I know one of the lessons I am supposed to learn... to enjoy the quality time I have with her. Enjoy the small things. Stop worrying about stuff that really doesn't matter.


Playing tea party with her, playing pretend, making her laugh, holding her in my arms, and having conversations with her is what I should be doing. I haven't mastered this "lesson", but I know for a fact that it was one of the things that this cancer crap is trying to teach me. I'll be working on it!







Tuesday, September 13, 2011

*Steroids*

These dang steroids!!! Man are they crazy. I miss my baby girl. Yes, she has moments of her normal personality but I miss the Taleah that everyone knows/loves. Her cravings are hilarious and stressful at times. I know some people think I am just spoiling her by giving her whatever she wasnts... BUT until you live 24 hrs/day with someone who is on them screaming/throwing a tantrum.... you don't understand. AND it is the only thing that makes her happy and the only thing she can control at this point... and sometimes it doesn't even do that for her. We can do 11 more days of them. She can do it. She has done so much already. I amazed at her strength. I am a routine person so I can't wait to have some normalcy and routine back in our lives.


She has been asking/craving Grammy's rolls. We brought a bag with us but it went bad while we were here. We have been trying to distract her with other things but she kept requesting them. Finally, we asked Roxi to make some and bring them to us. I can't even tell you the smile she got on her face when I told her Roxi would bring her some. Seriously. Food can do a lot for this girl right now.

Just to list some of her recent cravings... fruit snacks, string cheese, cheese and crackers, cafe rio, pizza factory, sprite, pink gatorade, subway "samwich", spaghetti ("buscetti"), noodles with white sauce (alfredo), pizza with the little brown things (sausage), rolls (grammy's), bagel with strawberry cream cheese

I am sure someday I will look back and laugh... I kind of laugh now...but kind of not!

Her little cheeks are doubled in size... her belly too.

Officially 33 pounds... a gain of 3 pounds.

She laughed a lot tonight.

I LOVED IT!

Day 17

Feels crazy to type "day 17". I want to say that it has gone by fast, but it hasn't. I guess the stay at PCMC has gone by a little bit faster. I guess it's because I know what to expect, recognize some familiar faces, know my way around, ect. I appreciate some of the great people I have met. And it really puts things into perspective being here and listening to everyones stories. Life is hard, but they all do it... and most of them do it with a great attitude. What amazing people!


Taleah has had a few break throughs. I was able to walk outside of our room to use the bathroom and also walk out to get some water. She sat in the room all by herself. That is huge. She also doesn't immediately start crying when the door opens... depends who it is. She is pretty good at getting her vitals done (as long as mommy puts everything on). She also calls them her "vitals"... not "arm squeeze" or "beep beep in the ear"... that is "temperature". She calls everything by their correct name. She is too observant. She actually liked the child life specialist that came in today and HE was great with her. She is usually afraid of men but not Mike. He had a tea party with her and she loved it. They made lizard juice, booger pizza and bug juice... she got a kick out of that.
Aunt Grammy came again today. She kept asking all day and when she showed up it was all smiles. What would we do without her?! Yep, she was dressed up again. I am pretty sure the nurses thought she was crazy but loved it all at the same time. They ate, shopped, ate, played dress ups, played with her phone and ate.



The day wasn't very eventful (luckily) minus the echo. They came in at 12 to say they wanted her sedated for that and to have her fast for the rest of the day. I about lost it. I didn't want her to be sedated 3 days in a row. I didn't think there was a need for that just for an echo. I really thought if I talked to her and explained things that we could get through it. They needed a good study to be sure that the infection hadn't cause any vegetation on her heart valves. After some arguing and convincing.. we got it scheduled and then completed with very little crying. She did great!!! She sat still and understood everything that I explained. I was so grateful! What a sweet girl.


I still miss being home and I miss my boys. I can't wait to go home tomorrow (if all goes well). Her PICC placement is scheduled for 10am. Hope they are on schedule. Hope she can fast throughout the night. Hope she does ok with sedation and doesn't wake up screaming again. Hope for a good night!

Monday, September 12, 2011

Added Bonus

Aunt Grammy came to play.

It was so good to see Taleah smile and talk like her normal self. It has to be the best therapy for Taleah. I loved watching. A lot! And it was a nice break. I even got to walk outside for 10 minutes and enjoy the fresh air. She seriously walked into the room just as the picture shows. She said she got some looks, but who cares as long as Taleah is smiling! She brought toys, purses, dress ups and stuff to "shop" with. Heaven!
Taleah decided that this was worth getting up and walking around for. Yay!
Hoping tonight is better than the last.
Also hoping that we get another negative culture and it stays away.
Hoping that good news is coming our way!!!

Day 16

I am sitting in the surgery waiting room flooding with emotions. I haven't been alone or out of Taleah's sight for a while now. My mom went to get the requested Cafe Rio. I am surrounded by families with children in "similar boats" as us. I don't know all of their stories but I can see the hurt, anxiousness and hope in their eyes. They are probably feeling similar feelings as I. This is so hard. Leaving her on that bed again and watching her be wheeled into the OR is something I will NEVER forget. I just felt that... 2 weeks ago... and here we are again. And will be doing it again on Wednesday.

The night went ok minus the fasting portion. Luckily the Benadryl helped her sleep from 3am-9am. At the point, I was told we would have spoken to the doctors and had a game plan. Wasn't the case... we saw a resident around 9:30. By 10:30am she had contacted infectious disease and the OR. We were told that the line would have to be taken out due to the kind of infection...staph. We would have to be without the port for 2 days and then she could have a PICC line placed. After that we could go home... as long as all things go as planned. I hate to think that we won't be that lucky but I am trying to think positive. The best news of the day was that she didn't have to be intubated to have the port removed or the PICC line placed (which was the hardest part of her surgery before). I was so relieved... one good thing. We were placed as an "add on" for the OR and we all know how that goes. I begged and pleaded to get her on asap...probably just like every other add on parent. BUT she is 2 years old and on steroids... how on earth is she supposed to understand all of that...? I am doing my best to explain things to her because she wants to know everything. It just feels like a lot of explaining for a 2 year old. Trying to explain why she couldn't eat ALL DAY LONG was tricky (especially because of the steroids). Side note... she did receive the scheduled dose of vincristine(chemo) today. So at least we are not too far behind.

She is now out of surgery. She was screaming for food when she woke up. She screamed in my arms for 1 hour. It literally ripped my heart in half. I could tell she was wanting to swing at my face, but she didn't. I couldn't get her to eat after the first initial breadstick because she was SCREAMING. I felt helpless yet again... nothing I could do. Tracine was nice enough to bring her request of Cafe Rio and Treena to bring the pizza factory. When she finally ate she was acting more herself...just tired. She has been requesting aunt grammy (Treena). Treena has been sending funny pictures to Taleah all day to make up for her not being here. She is coming tonight though and Taleah couldn't be more happy.

The infectious disease doctors came to chat. Her staph infection is pretty serious and can be pretty serious if it is in her blood for a long period of time. As of now, it looks like it was there for 2 1/2 days. He also said that they recommend an echo to make sure her heart valves have not been affected. Apparently this infection can damage those and then we run into some problems (please don't let that be us). One good piece of info... the last culture they drew from her port has not grown anything. Hoping that means that it is not there anymore and the antibiotics is working. Praying that it still doesn't grow anything and we can move forward. They will not put the PICC in until there have been 48 hours of negative cultures. I am praying/hoping that it doesn't grow and we can have the PICC on Wednesday and then come home. We will be able to do her second vincristine treatment in STG next Monday and then we will be up for a BIG day (LP,bone marrow, IT chemo and port placed). Hoping we can do it all in one surgery slot to reduce the risks of so much anesthesia.

As for now, we are here. Trying to keep her happy/comfortable. Sad to say but I think she is getting used to staying in the hospital room. She actually requested to go back to her room when we were eating outside today. I wanted to say that it's not "your room"... just somewhere we are staying... but I didn't. Sad.
Her labs from this morning showed that her counts have dropped a little, but that is to be expected from the chemo. Her cheeks are getting more and more puffy along with her belly. She now weighs 32 pounds (a gain of 2 pounds). Still no fever and so glad.

Aunt Grammy is on her way to play. Hoping the night goes well. Miss being home. Miss my hubby and baby boy. Miss nursing him (hate pumping). Miss my bed. BUT... at least she is doing well... at least she wants to sleep right next to me.... at least she grabs my hand in the middle of the night while she is sleeping... at least Slade is being taken care of by the Stevensons... at least my co workers are so understanding... at least I have a baby girl to worry about.

Sunday, September 11, 2011

Day 15

The night was rough. She didn't sleep well and kept requesting things that were not available. She screamed for 20 min straight for a Cafe Rio salad... the burrito was not cutting it at 2:30 am.
Not really the day I was hoping for. Awaiting good news from the blood cultures. Pumping her full of antibiotics, trying to entertain and keep the girl happy. She made requests all day long for all sorts of things (Cafe Rio, Pizza Factory & breadsticks..pizza with the little brown things, chips and guac, sprite). She was not afraid to demand it from anyone and she expected it right then no matter the time. Dr. Nygard came in and informed me that we would probably be here until Tue. The peripheral blood draw came back negative which meant the infection is probably in her port. I didn't fully understand what that meant. Everyone left to get things done/in order and I was waiting for Slade to come so I could feed him. Nygard came in and broke the news. They wanted me at PCMC as quickly as possible so they could remove her port due to the infection. They also wanted me to go by ambulance. I was shocked and said I didn't want to go my ambulance again. That was traumatizing and not the best experience. She hadn't fevered for 3 days and her vitals were fine. I couldn't believe it. Another thing gone wrong. Feeling really unlucky and bummed about everything. I didn't want to refuse the ambulance but basically said that I DID NOT want to go that way. I asked if it would make a difference if my dad went with us... they said no because even though he is a doctor he doesn't have all of the supplies. Not sure what they bargained, but gave us the blessing to go by car. I was stressed and crushed. I didn't know what to do with Slade. I feel like I have hardly seen him for the past 2 weeks. I am nursing him and that always adds the extra challenge. It is also a challenge to have him at PCMC because he wants to get down and play and that is difficult when you are dealing with a sick 2 1/2 year old. The Stevensons offered to keep him while my mom came with me to PCMC. We got everything arranged and bags quickly packed. Slade came so I could feed him one last time before I left. As we got in the car Taleah said, "That hospital was fun, but I like Primary Children's better." Little did she know that was where we were going.
The drive was ok. She slept for about 3 hours of the 4 1/2. That was helpful. I tried to sleep to gear up for the next few days, but only slept one hour. My mom and dad followed behind us.It was POURING rain and I felt like that just added to my anger. We arrived to PCMC and a flood of emotions hit me. It feels all too fresh... because it is. We are settled and awaiting the info/time for surgery. Fasting again.... on steroids. TORTURE! She will be an add on so there is no telling when we will go. But we have to be prepared and fast for the earliest time possible. TORTURE! This whole hospital will be awake tonight. I am sure of it!
My feelings are all over the place. I am pretty mad and upset. All of the "9 out of 10" things....keep being the "1 out of 10" for us. It sounds terrible to say but I feel like with all of the prayers in her behalf... that these things shouldn't be happening. I know that is not the way it works. I know things could be worse. Just doesn't seem right. Was it something I could have prevented? She has already gone through so much in 2 weeks. Her whole world has changed and been flipped upside down. Should she have to have added obstacles? Should she have to endure additional suffering? I don't think so. This is a lot to go through for lessons and growth. I must really need to grow and learn. Wish I could do it another way. I don't have the best feelings tonight. I don't want to even think about what the next few days will bring. PRAYING for good news tomorrow or some positive something for Taleah. Side note... We received blessings from Scott. They were very sweet and helped a little. Still anxious/nervous/scared.
Wish I could take this from her. So much!

the rest of the day...

Taleah was lucky enough to have some visitors. People to keep her entertained. It's a lot to do for a 2 1/2 yr old. Staying in one room for 3 days is a little much.
Dancing with Teeny. So fun. Some serious dance moves!!!
They provided Cafe Rio, pico, guac and chips, sprite and much more. This girl is downing the food. It's all she can think about. Seriously.
Her little cheeks are getting so puffy...her belly too. I guess that is the typical steroid look. Still pretty cute! It was so fun to play with her tonight. She had her sense of humor and smiles/laughs. I loved it. Loved it SO much. Maybe it was tp prepare me for what was to come...

Saturday, September 10, 2011

Day 14


It's day 14 which means it is the halfway point of steroids. Can we do 2 more weeks?! Her cravings have changed and it makes it a little bit more challenging being in the hospital. The hospital... looks like we will be here a while longer. Since the cultures were positive we have been waiting for the specifics of it all. We still don't have exactly everything, but we know it's probably staph aureus (good thing it's not MRSA). The on call pediatrician has been communicating with me and I wish it could just be Marsden all the time. I guess he doesn't want to work 24 hrs/day all the time! :) The vancomycin antibiotic should be killing the bacteria... but we won't know until the new culture that they just drew comes back in 48 hours. They also drew some blood from her arm to see if cultures grow from that blood as well. She was NOT happy. She knew what was coming and was pleading for no butterfly (the needle). Yes, it still breaks my heart when I have to hold her down while someone "hurts" my baby even though they are really trying to help. They also told me they weren't sure if she would be able to receive the vincristine on Monday due to this infection that she has. I am hoping she still can because her numbers are still ok and this chemo is not count dependent. I guess time will tell. Time... my worst enemy!

She has been asking to leave and to go to Grammy's or the Stevensons. I think just anywhere but here! We have been trying to keep her entertained.. Tabes bus (Tavia) came by with smoothies and some sweet drawing skills. Drawing ballerinas... weird! We decided to draw family members. Grammy's picture was a request and an EXACT request from Taleah (which comes with a side note).
Side note... Taleah is very observant and listens to everything/everyone. She overheard Teeny (a few months ago) telling my mom that she had "saggy boobs"... probably not the exact terminology I wanted my 2 year old to use but she heard it... and then repeated it. Of course everyone laughed so it is now engrained in Taleah's mind. She says Grammy has saggy boobs which explains the picture of Ballerina Grammy with "saggy boobs". Don't judge me... or her... let's blame it on Teeny! :) And I guess Tav for drawing it for her!
She also has an obsession with telling people they have stinky arm pits. Bizzare I know. This girl has quite the personality and I will soak it all on (especially today). We drew lots of people/ballerinas with stinky arm pits including Teeny, Uncle Paul (pumpkin), Chloe, Tay Tay and Izzy. This lasted for about 20 minutes and she was tired again.
She seems pretty tired today but much more herself than I have seen in a long time (2 weeks but feels lilke forever). I have received some smiles that mean more to me than a lot of things. Who would have thought that a simple smile from your child would feel so good.
She has not been running a fever for almost 2 days. Her labs were pretty good considering... WBC 1.8 Hct 29 platelets 115,000 ANC 1200
Go away infection. We want to go home!