Monday, February 27, 2012

Emily's Song for Taleah

Taleah's aunt Emily wrote this song for Taleah. She performed it at the benefit conert and it was amazing! Thank you Emily for this beautiful song. The video is perfect as well. We love you!

Sunday, February 26, 2012

We can do hard things! (IM2- Day 7)

I tried to keep telling myself that I could do hard things throughout this half marathon. I kept thinking of all that Taleah has endured. It seemed to help. Knowing I would see them at the end kept pushing me to go. I hadn't had the time to train like I wanted to due to hospital stays, long nights, life, ect. It all worked out. It was a good boost for me to remind myself that we will keep on going.
So not a good picture of myself... at all. BUT the only one we have in action.
There were a few days that I thought we were all going to go crazy in our house, but we survived. We survived by having dance parties at home and in the car, tearing apart our house (and whichever house we were at), eating food, playing lots of pretend... oh and we can't forget the meltdowns and tantrums!!
(Yes, my sister combed his hair over and took this pic... this passes by the time too)

I am pretty sure this weather has been our lifesaver. We have been able to get outside and enjoy the fresh air. This mild winter has really been a blessing for us. Really. We have only traveled in 1 snowstorm and had decent weather in all of our trips.

Heavenly Father does bless us in so many ways. Honestly, it is crazy to think that I would be saying how blessed we are BUT we really are. I have learned so much. And I must say that this community is AMAZING. It never ends. There are always people that are helping. So many that we don't even know about. We will never know who has helped us, but I will say that we can feel the love. It has changed us forever. (I have to finish writing about our Pine View experience. It was such a special day). There are still days that I think this cancer is too much, but everyone has their trials. Some may be small or big, but no matter the size.... they are still hard. They are still learning experiences and they are still a part of everyone's lives. I never want anyone to say they feel like they can't talk about their problems to us because we are dealing with so much. Sometimes it is nice to focus on someone else and not talk about us. We want to be a part of other people lives, even though sometimes it is hard because we are so wrapped up in our own life. We want to pay it forward and we plan on doing that when things get a little better.
This phase will hopefully go ok and if it does... we will be able to do our next visit up there when we are already planning on being up there for cheer nationals. Scott would be able to go with us and see how clinic works. I really hope that her body responds and we can give her the chemo that she needs when she needs it. She is a tough cookie. I know she can do it!

Teaser- IM2

Let's just say that the week leading up to our trip was wonderful. I loved every second. We were still careful and cleacn, but I am afraid that may be a new way of life. It has to be.
We left in the afternoon so we could have a little time to play in SLC.
We stopped for dinner before we headed to visit the Warners. Taleah was thrilled to see the kids.

She had fun playing with Kaleb. He is all boy and she is all girl. Pretty funny to watch them interact. She was a little shy and kept her distance, but then she reminded me that he couldn't get too close because she was accessed. Anytime her port is accessed, she is sure that everyone keeps their distance. I have to be extra careful even when I am picking her up.
I tried to encourage her to be extra brave today. We told her that we could go to Build-a-Bear if she was nice and brave. She was already accesed so that was a big step. We were on a Tuesday... which is different from our usual day (Monday). The second we walked in and saw different people, she was checked out and wouldn't even weigh by herself or with me. I thought it was going to be a rough day. Luckily, Daphne walked in right then and saved the day. Taleah wanted to show Daphne how brave she was. I love that we always see them at clinic!!
While talking to Barnette, Taleah had my phone (as a distraction) and took a picture of herself and then posted it on facebook. This girl seriously runs my iphone. It's bad news. Anything to keep her distracted. She interacted with Dr. Barnette so much more this time and didn't cry. YAY!

She was not thrilled about the sedation. We arrived at 8am and headed into the sedation room at about 10am. She calls it the smiley face (because of the leads they put on her stomach/chest) room that makes her dizzy. It broke my heart that she told me she didn't like how that room made her dizzy. Awww... dang cancer.
She wanted to hold her blanket and basically hide from the nurses. We took pictures to distract and pass the time. Whatever works right?!
We have to wait after sedation because they have to monitor her for 30 min in the room and then another 30 min in the infusion room while she is getting her chemo. Using my phone as a distractin again... watching Barney.
We headed to the mall and granted her wish because there were NO tears. She was awesome. She didn't feel great and was tired while getting the chemo. She loved building the bear.

She named her bear Mi Mi.
The ride home ended up being ok because she slept 3 hours of it. She woke up with 40 min to go and she was in so much pain. It broke my heart. She cried because her head hurt so bad. She threw up when we got home. She cried in pain all night and it broke my heart. She ended up sleeping with Scott and slept through the night. I had to work the next day and my mom had the kids. It was obvious she didn't feel well. It's terrible watching her suffer. After work, I brought her home and she cried for 2 1/2 hours. I hated that too. She was suffering and nothing I could do was helping. I figured my anxiety proved me right. Dang cancer..... stealing her innocence. It's so hard to watch. The last week was a teaser. I can't decide if it was good or bad because now the bad seems so much worse. It was sense of normal life and a happy girl and then it was a big slap in the face. It was that reminder of cancer that has changed our lives. It was a big reminder that we are so not done with this and we have so far to go. I was officially dreading the next 2 months. I was hoping we could be to maintenance already. Even last year... IM2 was not a part of the treatment plan. It is an added phase, but I guess it is for a reason so we will take it. Praying she will do ok.

Sunday, February 19, 2012

Tiny Anxiety

I took a few pics with my phone at the game. I had to post a few to try and show how amazing it was. A moment I will never forget.

We had a great weekend enjoying the weather and a few "normal" things. We attended soccer games, went to lunch, attended the PV race, ect. It was lots of fun and tiring too.

She was excited for the race. She kept telling everyone (the night before) that there was a race for her in the morning. I think she thinks it is normal for every kid to get this special treatment.

The support was AMAZING! I couldn't even believe it. What a great school and a great community.

We went to the DHHS basketball game (she wore a mask most of the time). She loved it. She loved people watching, being surrounded by people and feeling normal. She wanted to stunt after the game with the cheerleaders. She was a little shy once she was up (people were staring), but she loved it and won't stop looking at ther picture.

Sad to say, but I think this weekend has weighed heavy on me because I know we are headed to Primary's on Monday. It's weird because it is mostly the drive that stresses me out. I think it's because I know what it is leading to... I don't know exactly but I HATE the drive. Bad attitude I know. She wasn't thrilled when I told her we were going up there. Breaks my heart cause she hates it, she mostly hates being sedated. I hate it too. Dang! I am anxious about this new phase, even though it is similar to what we have done. It is much higher doses of the methotrexate (don't even get me started on the shortage thing). I am stressed to say the least... it's the unknown that I don't do well with. AT ALL. I just want to have a normal life again (even though I know that will NEVER happen). I just want her to be able to do the things that other kids do like gymnastics, dance, cheer, whatever she wants. Luckily, she doesn't grasp it all other than she hates feeling crappy. I am going to try and have a good attitude and embrace the drive up. We can do it.

Wednesday, February 15, 2012

Overwhelmed with Emotion

I don't have the pictures yet, but I have to write down my thoughts. I am SO overwhelmed with emotion tonight. Today has been one of those days fille with good people.

I took Taleah to Kneaders to get soup for lunch (my get out of the house excuse). I waited in the drive thru for a good 10 minutes. I was somewhat bugged because Slade was crying and Taleah was getting mad at him for crying. When I pulled up to pay, the guy told me that the car in front of me had already paid for me. I didn't recognize the car and he wouldn't give me a name. I couldn't stop thinking of the nice person that would do such a simple act of kindness. I have no idea if it was "cancer related", but regardless that was something nice that made my day (and changed my attitude).

We attended the PV vs. DHHS basketball game because I was told they were doing some things for Taleah. While walking to the front of the high school, we noticed some kids with pink Taleah shirts on. Also, some random kids wearing pink. PV kids were told to buy these shirts and the DHHS kids were told to wear pink. I was emotional before we stepped into the building because these random people we didn't even know were wearing shirts to support Taleah. The silent auction was at the front (again emotional), the students were sellling concessions, students taking registration for the race on Sat, and endless people smiling at her (again emotional). We walked into the gym and saw the b-ball team warming up with the Taleah shirts on, the cheerleaders wearing them and 3/4 of the student body wearing them. Tears filled my eyes. I then noticed the signs on the walls.. big, huge signs with sayings for Taleah. Again, tears filled my eyes. I was trying to hold back the tears with everything I had (it freaks Taleah out). We sat down in the corner at the back of the gym. They announced Taleah's arrival, my dad held her up and she waved. I officially lost it. Seriously, I couldn't hold it together... for like 5 minutes. It was so humbling in so many ways. The b-ball coach gave a little speech before the game. The administration were wearing Taleah shirts. I know some of these people. The guy in charge is related to Scott, I coached some of the students that are in charge but some of these people I don't even know. They probably have no clue who were are, but they are donating time and money to help our family out. Watching these high school kids doing so much service gives me hope for my children. I couldn't even think straight due to the emotions and feelings I was experiencing. As we walked out, I noticed another sign that was advertising a stomp at the high school last Friday to raise funds for Taleah. Again, passing more students/adults with her T-shirt on. There is still a run this weekend and the assembly next week. I probably don't even know all that has been done in our behalf, but what I do know is how amazing these people are. It is something I will NEVER forget. We feel so fortunate to have the love/support from people. I am sure there are people who need it more, but we truly appreciate the love/prayers/support.

I would never wish our situatoin on anyone, but the things I have learned/experienced have been life changing. I will never be the same.... in so many ways.

Recovering- DI- Day 60

We have been trying to keep busy at home. Anxiously awaiting the CBC on Monday... hoping for good counts. If so, we would have a fun, half-way normal week.

We made cookies, played games, cooked dinner, went to swig... anything to keep busy.

There was even a burst of good weather among all the rain.

I don't mind being atuck at home all of the time when the two of these kids fight over loves from me. They were particularly good this day and I was totally ok with it!

When nurse Jeanette came, Taleah was SO brave. Not 1 tear!!! She was awesome. I was one proud mommy!

When the numbers came back...

ANC 1000

Plts 374,000

WBC 2.4

Hct 32

.. she opted for Pizza Factory. I gave in....

Valentines Day was a hit. Taleah loved it. All of the little surprises, treats and simply saying, "Happy Valentines Day!"

We decided it was ok to go to dinner with good enough counts. She wore a mask until we were seated. It was pretty fun.... Slade is just a hard age right now. Sitting still is really not an option. He was thrilled to be my date... can ya tell?!

We ended the date night with some Wii fun. It pretty much ended up with Scott and I battling (my competitiveness came out). The kids had fun and we enjoyed being a "semi-normal" family for a night.

I am trying to embrace this week because of her counts and the way she feels. After that fresh blood, she has been full of energy (even more so). We had some behavioral issues over the weekend. It's almost as if she is using cancer and being sick to her advantage. Things like, "Mom, I need to throw up (while in bed)!" I run in and then she tells me she needs a snack. Or she will request someone to sleep by her because that's what makes her feel better. Using a headache and needing special juice as a stalling tactic. Smart girl. I just don't want to enable her and let her get away with things because she has cancer. I don't feel like we would be doing her any favors by teaching her to use that as an excuse, accepting bad behavior because of her state. I know when she really isn't feeling well and I try to adapt and be the best parent I can. Mostly, I think these younger years are crucial and I don't want her to end up a brat. Sounds dumb I know.

BUT... this week has been pretty good. I'll take it. Gearing up for next week!

Thursday, February 9, 2012

Home (DI Day 55)

It's amazing how you take for granted the small things. Giving your kids a bath... who knew it could mean so much...?! You would think I would have that down... not taking things for granted. Apparently I need this lesson because I seem to forget sometimes.

We were so glad to visit with Chase (another cancer cutie w/ the same diagnosis). They both have low counts so we figured we could be on "house arrest" together. Ha. It was a short playdate but Taleah had fun. Oh and Slade did too. Getting into EVERYTHING, making messes, the usual. I think we did 5 different activities in about 45 minutes (games, tea party, cars. hiding game, ect).

It has been great to be home, but I can't help but think of the Flamm family. There is a link to their blog on the side of mine. We have looked through her blog, met Amanda (Millie's mom) and asked occasional questions. Millie has the same diagnosis as Taleah and they are such a cute family. I kept telling Scott about the end of treatment party they were planning and the surprise cruise they were taking their kids on. I guess their family hit close to home because she was about Taleah's age when she was diagnosed and they had a baby boy (similar to our situation). Her last day of treatment was scheduled for Feb 2nd, and they even had a neighborhood welcoming party with signs and all. The last few months of treatment had been rough (fevers, kidney stones, surgery, ect). She couldn't get "better". They found out a few days ago that her cancer is back! It came back before she even finished treatment, which is not common/likely. She will now endure 3 months of harsh chemo(inpt at PCMC), a bone marrow transplant and then a good 6 months of healing. They tested her little brother (2 or 3 yrs old) to see if he is match (siblings are the most likely match... 1 in 4 chance). I can't even comprehend what they might be feeling. Going through 2 1/2 yrs of treatment and then finding out at the VERY END that it's back. Honestly, it terrifies me. I feel horrible for their family and I can't help but think that might be us too. I don't know what we would do. It's so scary and so wrong. It's not fair and there should be a cure for these kids. A.L.L. has a great cure rate, but it's not 100%. That scenario is one of my biggest fears. It makes me even more passionate about finding a cure and supporting the research for childhood cancer.

I just needed to get that off my chest. And there is a link on my facebook page for anyone that wants to help their family... even a little bit.

Oh man. Here is to hoping that Taleah can have a few good weeks so we can continue on with our treatment to kick cancer's butt!

Keeping Busy @ the Hospital

Let's just say that sitting in those rooms for 4 hours is rough. Especially after your child receives blood and is FULL of energy. I had to work the last day we were there. We have great family that was able to step in and play with her. It may have been a blessing for Taleah and I.

We were able to venture out (w/ a mask). This is the first time she would ride in a wagon and loved it. It was our "out".

Oh how she LOVES nurse Heather. She was thrilled to finally see her. I can't even tell you how much she loves her.

Chloe came at just the right time. We were patiently waiting for our "48 hour" negative culture... and needed something to get us through the next 2 hours. Yay for Ash and Chloe. Chloe even loved the wagon. Yes, it may have been 9:30pm and we were roaming the halls. We encouraged their quiet voices... I am pretty sure we didn't wake anyone up.

Tavia delivered Kneaders while Grammy was there. And I didn't get any pictures of Grandma and Grandpa Stevenson, but she partied with them too. Everyone commented on the endless energy she had.

I guess I didn't realize what a little blood.. actually a lot of blood.. could do for a 3 yr old. Her lips and head acutally look pink to me. They aren't... but actually have some color.

Boy are we glad to be home. Now if her dang counts will come up.... so we can start the next phase and knock them down again. Oh the joys of cancer!

Monday, February 6, 2012

DI- Day 52

I was gone from Friday night- Sunday morning. I was nervous to leave because of Taleah's low grade temp, but I needed to go. It was a sort of getaway, but for a cheer competition (loud music, yelling, headache). I was glad that Scott offered to keep the kids without complaining.

Upon returning home, Taleah still had the fever. She was a little whiny, pale and tired..ish. Nothing really new. I still wondered if the transfusion would happen, but we were expecting the CBC the next day. Should have listened to my gut. She started complaining of head pain around 7pm. The temp was 100.1-100.3. We continued to watch it and take her temp. I just knew we were going to end up going in, but I didn't want to accept it. I wouldn't pack a bag or hers. Instead, we went on with night routines. I finally realized we would go and started getting things ready. It broke my heart when she cried and said she didn't want to go. She wanted to sleep in her bed. I just about broke down. It was a flood of memories from the last fever which ended up scary... surgery... and lots of problems. I was so mad, sad, scared and angry.

We arrived and Taleah actually handled all of the new faces very well. I was surprised. She was so tired (we started the no nap thing this very day). When the CBC results came back they called and asked the nurse to draw another because the labs had to be wrong. Sure enough... they were right. Her WBC was 0.4, ANC 200, Hct 14 (they usually do a blood transfusion at 24) and platelets at 20 (usually transfuse at 50-60 I think). OH MY GOSH! Everyone was shocked. She was not acting that way at all. I knew we would be admitted and staying. Dang.

Here goes a long night. Starting with fluids (30 min), premedication for transfusions, platelet transfusion (1 hr) and then blood transfusion (4 hrs). During it all... vitals. Holy long night. Wow. She slept through most of it thanks to the Benadryl and no nap.

I layed there next to her, holding her and thinking of the great donors that are saving my baby's life.

The morning showed that her numbers had come up, but not enough. Hct was 20 and platelets 79... so better but immune system still WAY down. She had another transfusion to hopefully boost that Hct to help boost the other numbers. If that happens and nothing grows back in the cultures... then hopefully she can go home in the morning.

Again, the benadryl put her to sleep. Peacefully sleeping while the blood is pumping through her body. I felt a sense of humility watching this transfusion happen. This trip was emotional for me, but different than before. She was handling things so much better. This was different than any other time. It is SO much easier being in St. George.

She had a few moments where she needed mommy to hold her hand. Not many, but I didn't mine. I didn't mind feeling needed.

The biggest advantage of being here is having daddy around. He doesn't get to be at much when were at PCMC. I LOVE having him here to help and be a part of things.

Tonight is the first night I won't be sleeping at the hospital with her. Scott is all over it. I was nervous, but walked in the room to say goodnight and Taleah said, "What are you doing here?". That was when I knew they would be ok. I walked in the room to 2 content kiddos entertaining themselves. Whatever works.

I am hoping and praying that we can go home and finish the antibiotics there (which I think is 10 days). Praying for good news in the morning. Poor Slade is neglected.. not really cause he is with either grandparents... but I feel like I am neglecting him. It is a horrible... guilty.... failure feeling. I know I am doing what I have to but I still miss him and feel bad. Good thing he has loved ones caring for him.

I feel grateful and humbled to have the help and support that we do. One nurse mentioned that she had seen our Taleah bracelets all over the place and was wanting to meet Taleah. How sweet is that?! Thank you everyone. It means more than you will ever know!! Prayers for Taleah are needed more than ever. This phase should be over in 2 weeks. It can't come fast enough.