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.
Wednesday, September 28, 2011
Ups and Downs
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.
Just the Way You Are
http://www.youtube.com/watch?v=N2oNHQ7hjSI&feature=share
Tuesday, September 27, 2011
Big Day (Continued)
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
Saturday, September 24, 2011
Day 28
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.
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...
Thursday, September 22, 2011
Day 26
Together for Taleah Benefit Concert
Wednesday, September 21, 2011
Day 25
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!
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
Monday, September 19, 2011
Day 23
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.
Sunday, September 18, 2011
Day 22
Saturday, September 17, 2011
Day 21
Friday, September 16, 2011
Day 20
Thursday, September 15, 2011
Day 19
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).
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!!
Day 18
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.
Tuesday, September 13, 2011
*Steroids*
Day 17
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.
Monday, September 12, 2011
Added Bonus
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
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 rest of the day...
Saturday, September 10, 2011
Day 14
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).