Day 12 (night) & Day 13

I was able to coach cheer last night (thur) while Taleah stayed with my mom. She was miserable and had been all day. I immediately reached down and she felt warm. I took her temp and it was 101.8 which was above the allowed temp. I paniced for a second and then knew it was time to take action. Ahhh! I was trying to remember exactly what Dani prince had told me. Call Primary's, call pediatrician and then the peds floor to tell them we were coming. Marsden's office was not quite understanding, but we got it worked out. We rush to the hospital so we can get admitted, access her port, draw blood to send down and then start the antibiotic within 2 hours of her fever beginning. Stressful. I was hoping that we could go a little bit longer before having to deal with the fever thing.

The accessing was ok, she dealt with things pretty well (probably because of the oxycodon). Marsden came and checked her out. Her breathing was pretty rapid and her blood pressure was a little high. Her WBC was 1.7 so they thought she was way low. He informed us that we were probably staying the night.... ahhh! Better safe than sorry. Long night but not horrible. I was convinced that we would head home by noon. Her ANC came back 1400 so I knew for sure we would. After talking with Marsden, we decided we would be ok to go home. She was crying, "Mom, I want to go home!" Just about broke my heart. We got everything ready, discharge papers signed and port deaccessed.... the nurse stopped us and said, "sorry to say but your cultures are positive." My heart dropped. I wasn't even sure what that meant. Bacteria in her blood and can be very scary. I just couldn't believe it. I had to break the news to her. It took everything I had to not break down. I have to hold it together when I am with her. One of my biggest challenges. Not only did she not get to go home but we had to reaccess her port. Awesome.

To be completely honest, with the Leukemia diagnosis... before we knew it was cancer they said "9 times out of 10" it's not Leukemia and then it is. Then with the fever and the blood cultures "9 times out of 10" they don't come back positive but then it does. I am tired of being the "1 out of 10". Can my poor baby catch a break...? We are not even 2 weeks in and she has already endured so much. It just doesn't seem fair. I hate watching her cry and go through so much. I don't know how much more of it I can take. I keep hearing that I am strong, but sometimes I don't feel strong and I don't want to be. I don't want to do this. I know there are other people that are worse off. I know there are kids that are suffering more than my child. I know there are parents that are hurting more. BUT it doesn't make it any easier.

She has been doing a lot of resting. There have been some moments of Taleah personality. It kind of seems like she is in a little pain, but overall better today. Her hair is shedding much more. A lot actually. I think she is starting to thin, but not completely fall out yet.

The Desert Hills game was fun to be at for an hour. They raised money for our girl and made the cute poster. People are so generous.

I was feeling pretty good about things. We had been to clinic, RTU, pharmacy, home routine for a week. We had the calendar and game plan. I am a planner and it seemed like we had a plan and I was ready to get it going. This whole hospital visit was not part of our "plan". I have been mad and angry. And... mad!

The day is almost over and I have figured out that the fever visit is part of this. They are expected and that is why a "plan" is in place when they do happen.

This "plan" is throwing me a major curve ball and I am still trying to sort it all out. All I know is Taleah is doing amazingly well. She is stronger than I will ever be!

Day 12

(doesn't want her picture taken... does want to be held at all times)

Well, the day is not over yet.

Taleah did great at the Stevenson's last night (or so they told me). She slept with grandma on the waterbed. Woke up at 3:00, 4:30 and ate pizza and ice cream. She watchd Tangled with grandpa, fell back asleep and came to grammy's at 8:30.

I was able to run this morning (6.5 miles). It was kind of hard but felt pretty good. 3 weeks ago that would have been a breeze... training has obviously been on hold. We are going to do our best to keep it going, but it won't be like it was. The marathon will still be attempted. Hoping it goes well and someone from higher up will be on our side!! :) I also went to work for about 5 hours. It was good, scary, a break, tiring, ect. I had my phone in my pocket and jumped everytime in rang. My mom and dad kept Taleah and Slade. I knew they were in good hands. She had a pretty good day with them. One major meltdown and few minors. She is miserable and you can tell. I can tell she is in pain. The Dr. said to give her oxycodone...I have been refraining from that for a few reasons. I may give her a small dose tonight. Dr. Verma said that the steroids can cause major pains in the muscles and bones. I think Taleah is associating the pain with her port because she keeps complaining of the port. I think I'll try a small amount tonight. Dr. Verma said my job is too keep her comfortable. Dang steroids!

She wants nothing to do with me...or at least it feels that way. She was fine spending the night, fine with me gone at work (minus the 1 meltdown), fine staying at Grammy's while I brought Slade home for a nap, fine to stay there all night. I am not sure if she is associating me, our house with sickness and medicine....who knows. As long as she is happy that is all I care about.

Dr. Verma called with some of the results. Still no sign of leukemia in her spinal fluid. The specific Leukemia blood test (can't remember the name) came back 0.01%, which is great because she said they like to see it at 0.1% at this point in the treatment. Her chromosomes came back in the average group, meaning not good but not bad. So.. as long as her body keeps responding the way it is then we will have a great game plan by the end of this month.

The upcoming (2) Mondays, we will have the chemo (vincristine) here in STG. Anxious, glad to have it here. Man, I am anxious a lot. I better get used to it (seems crazy to live this way). Our next "big day" will be September 26th for the LP, chemo and boen marrow aspiration which will tell us a lot more about the rest of her treatment. My job is to keep her comfortable & healthy to make it up there for the end of this phase. Side note.. she will stop taking seroids after September 24th so at least fasting should be a little better.

I am feeling ok about things. People keep commenting on the fact that I am holding it together, which sometimes I am. I still breakdown. Sometimes I honestly feel numb (hate to even say that). I am a planner, so having the calendar with everything written out for this month helps. Having gone to clinic and seeing how it works helps also. Getting anxious to know what the next phase entails. I have accepted the fact that I can't change it even though I HATE that I can't. We just have to do it. I just want to do it, learn and grow and get it over with!

Again, the love and support is amazing! Thank you!

Day 11

Today was ok. I hate to wish time away, especially for Slade. BUT I am happy to say that one more day has come and gone. It sounds horrible to even say that. I am grateful that we have her. I am grateful that I get to have these experiences with her. We are going to learn/grow so much. Let's just say I might be wishing this month away.

The Stevensons kept Slade last night so that I could get some sleep (well only have to deal with one crying child in the middle of the night). She actually did ok (besides battling for 40 minutes about taking her medicine). She woke up at 3:00 to eat Cafe Rio. As I got it all ready, sat her down with the food in front of her she looked at me and screamed, "Get away, go away mom!" I quickly sat on the couch so I could still see her and her see me. She then yelled, " I said, GO AWAY!" So I sunk down on the couch so she could not see me. When she was done eating, she requested Yo Gabba Gabba. I told her no so she said, "Carry me to my bed to go to sleep!" She slept until 6:30 and requestd cafe rio once more. I am pretty sure I thought I would never hate the smell of Cafe Rio, but I might end up hating it.

Slade came back home around 8:30 and Taleah was loving that for a minute. Until she realized she wanted my full attention. We ended up going to Grammy's at 10:00 so I could go to IHC and get things worked out.

She was really whiny all day and wanted to be carried and held all day. She was asking for Grandma and Grandpa Stevenson all day long. She wanted to be at their house. Grandpa picked her up at 3:30 and she has been there all night. She even decided to have a sleepover. I agreed to get a good nights rest so that I can stay healthy. I am hoping she does ok. There is no telling how she will act in the middle of the night. Praying she does ok. Good thing I am one phone call away and a 2 minute drive.

I have no idea if it is normal for her to be so tired. She doesn't look pale like before, just tired and lazy. Praying that her little body is just busy fighting off the cancer that she needs her rest (lack of energy).

Those dang steroids are kicking my trash. And hers too! More her though... poor thing!

Day 9 & 10

Day 9 was relatively ok. She was clingly, needy and extremely hungry. The whole café rio thing was not a day thing. We purchased another burrito and she has officially finished the 2nd one. Family was so great to help out. I only had 1 kid the entire day… either Slade or Taleah. That made things a lot easier. I feel like they both need my 1 on 1 attention right now. It’s physically/emotionally exhausting. Worth it though, I will do whatever I have to in order to make my kids happy. Scott and I were able to get away for a minute to look at cars. Ironically, we sold our car the night before the diagnosis. We had decided that we wanted something that got a little better gas mileage and something that had 4wd/awd. Now we really need something that will be safe, cheaper, and comfortable for her to ride in. It was a good break from all that is going on. My mom, Tavia and I were able to go for a pedicure to relax/get away. We tried to go places close to the house, but they were closed for Labor Day. We headed to Asia nails for a sort of pedicure (10 minutes long and not much of a “pedicure”) but it worked out because we were in a hurry to head up to SLC. They asked us for a design and we thought it would be fitting to do the childhood cancer awareness ribbon (gold). When we told/showed them, they looked a little puzzled and asked why. I told them and they were pretty sweet, but didn’t think that it was possible. They had no gold writing and didn’t think that it would be perfectly even. My mom volunteered her toes to try it on and I wanted the same. It was more of the thought that mattered. A good reminder/symbol… even though the ribbon is white with a lit le silver…close enough. 
We left for SLC around 7:15 pm in hopes that she would sleep half the way. And she did more than that… she slept from the STG on ramp to to Treena’s front door. And man was she excited to sleep there… oh wait we didn’t sleep much. She played dress ups, ate café rio and pretend shopping with Treena. She was in heaven and didn’t want to go to sleep.

Let's just say that we didn't sleep much. She went to bed at 12:30, woke up at 1:30, 3:30 and 4:30 crying/screaming/whining for food. She was starving... the only problem was the fact that she couldn't eat because of her procedures. TORTURE!!! I thought the night would never end. She screamed about a pink penquin, pink cookie, cafe rio, water, didn't want my help, didn't want me under the blankets. I laid on the edge of the bed, freezing and whishing 6am to come faster. The second I pulled her out of bed, she asked me where we were going and then she said, "We are going to the doctor aren't we...?" Just about broke my heart. I hadn't gotten that fair in our plan. She can't be lied to and wants to be informed of everything that is happening. She kept saying that she didn't want to go to primary childrens. I tried to reassure her that it was going to be ok. I couldn't tell her that we weren't having a sleepover because I didn't know if we would be admitted.

Walking in was enough to start the tears/anxiety for Taleah. The clinic was ok, but she was unsure of everyone and everything that was happening. Accessing the port was traumatic, or should I say lifting up her shirt to look at the port was traumatic. Actually putting the needle in was much easier than actually lifting her shirt up. She ended up loving the nurse, Lindsey. She was terrified down in the RTU. She did great having the vincristine.. and actually lifted her shirt (only for Lindsey) to give her special button the special drink (chemo). Our only setback... she was STARVING. She was requesting a roll. However, she couldn't eat until after the RTU (lumbara puncture w/ chemo in the CSF). That's all she could think about.
I was afraid she was going to wake up grumpy, but she woke up kind of loopy and saying funny things. She said, "What the heck, look at my bandaid light lady (the nurse)." She got a kick out of that. When she woke up from the anesthesia, the 1st thing she wanted was a roll. Grammy had 4 options to choose from, but she only wanted Grammy's rolls. Too bad we didn't have those on hand.

She did love the turkey sandwhich and downed the entire thing. It was super tall and she didn't want us to cut it in half. It was seriously hilarious. My mom and I both started laughing so hard. It felt good to laugh. Had to get a pic w/ my phone.

Food never tasted so good!!

Her counts/bloodwork ended up being decent. Decent enough that we didn't need a blood transfusion or platelets. We had been informed when we left the hospital as in inpt to expect both when we came back... YAY. Good thing they were wrong. :) Must be those prayers.

The ride home wasn't great. She was kind of nauseous and had a slight headache. We made it though and she is glad to be back.

The 1st clinic/RTU visit is over. Glad to have that behind us. I feel ok about it. I know they will not always have "good news", but it was nice to hear it for a minute.

It was sad to leave her for the LP, it was sad to hold her down for the port access, it was sad to listen to her ask me tons of questions and then hate the honest answers I gave her. Distractions DID NOT work. They never do for her. She wants to watch it all and take it all in. Smart girl!

Had another real moment... when she was laying on my stomach and then sat up.. there were about 12 hairs on me. She never sheds. Maybe it was coincidence, probably not. Her hair is starting to go. Gotta think of a way to explain that to this girl.

So grateful for the family we have to help us out (and all the friends and family too). Makes it doable... still sucks... but at least it's doable. I guess today I am feeling a little better about things. 18 more days of steroids, 18 more sleepless nights (actually probably many more to come), 18 more days until this 1st month is over.

She is a trooper. Seriously. Love ya sis!

Day 8

(Teeny made her laugh so hard... thanks!!)

The steroids have made their appearance. Welcome!

Cravings, eating and eating. Most kids request/crave McDonalds or fast food. Not Taleah... she requested Cafe Rio. Yep, 10:30 am and she wants Rio. Phone call to grammy and Cafe Rio delivered 30 min later. What a lucky girl! Snappy little attitude and wanting mommy almost all day. Hoping her sleep isn't too interrupted by these, but chances are.... it will. Counting down to the end of this 1st month.

Scott wanted to go to church today... and I did not. Not because I don't love church, or I'm not thankful for the ward, but it was fast and testimony meeting and I knew that I would be prompted to get up and share my feelings/testimony. I told him that I was not ready and this was all too fresh. It is...but he wanted my support and he wanted to publicly thank the ward for all of their hard work/support.

It turns out, church was what I needed. Took some of the anger out of my heart and pointed me in the right direction. One statement that hit me hard... committment to the gospel will get you through hard things. I know that this sucks and it's hard, but using my knowledge of the gospel and the Atonement helps. A lot. Another ward member pointed out that service is something they are willing to do. And even though sometimes it is hard to be the receiver of service, accept it and embrace it. Others will be blessed and they want to help. That is a lesson I have learned very quickly. I will do my best to embrace it. We appreciate it more than ever! The ward was very sweet and supportive. It was hard to make it through sacrament meeting, but we did. And I know it was just what I needed.

Day 7

Today wasn't too bad. She had a few freak outs, a little complaining of being in pain. HATED taking the medicine. We tried crushing it in Hershey's chocolate syrup... she liked that better than chewing the pill.

It's almost as if this is all a dream...only because she is still playing, moving around and almost herself (minus the slight temper and increased appetite). Don't worry though, there were moments of reality too.

(1) Cousins came by to say (stayed outside in the front yard) and I had to follow her around to make sure she didn't get too close to anyone, touch anyone or touch the same toys. That's fun for a 2 1/2 year old...let's just say she didn't love that part.

(2) taking her temp every few hours

(3) reading other cancer cutie blogs and seeing what is to come

(4) people going out of their way to do sweet things for our family

(5) looking at her port

(6) Taleah saying, "mommy, careful don't hurt my port" (she said port...not special button)

(7) telling her she can't play with friends/cousins 100 times throughout the day

(8) playing doctor

(9) having IHC tell me that I am not elidgible for a leave or any time off to care for my child with cancer

Those are just a few of the moments. It's real. And let's be honest... I was angry tonight. I put the kids to bed and felt sorry for my baby girl... and myself. Kind of selfish on my part, but I was. It's SO not fair. Life's not fair right!? I have heard that my whole life.

I am trying to stay positive, but sometimes I just CAN'T.

Day 6

I can't believe day 6 is almost over. I am so glad. That means 22 more days until she can stop taking the steroids. YAY!

Last night was rough, really rough. She started having nightmares when she heard Scott open her door. She did the same thing in the hospital...only that door opening meant someone was going to check her out/move her around. Breaks my heart that the sound of a door opening triggered the horrible nightmares throughout the night. I ran in everytime and she would yell, "Get out mom! Go away!" Stab to the heart. I am her mommy and I'm supposed to comfort her, but I couldn't last night because she didn't want me to. I want to blame that on the steroids....and I will. Slade also woke up 3 times screaming, but opposite times of Taleah. I ran in everytime, but I was able to comfort him. Scott also woke up once...sleepwalking and asking for a spoon for the chemo and phone call...what the heck. I had to yell at him to snap him out of it and then he threw the spoon down on the counter. I then decided that this night couldn't get worse. I had to keep an eye on him, Slade and Taleah.

The day went pretty well. She wasn't too crazy. She munched on little things all day long. String cheese, wheat thins and cheetos are her new thing. Still drinking lots of water. That dang medicine...I have got to find a solution asap. I tried teaching her how to swallow a pill, but that didn't work out too well. Who would have ever thought that I would have to teach my 2 1/2 yr old how to swallow a pill...? That sucks. I am going to try the syrup route because chewing them isn't working out too well.

I feel like we are getting a better grasp on things and accepting what has been dealt. Doesn't mean I am happy about it. I'm not. Still doesn't seem right. However, things are in a little different perspective now. I kinda see the big picture. One thing I do know...families are everything. Friends are great too and I am so grateful for them but families are where it's at! Our families mean more now than they ever have! They have been AMAZING throughout this entire process (makes it sound so long but it's only been 1 week).

It's been 1 week since the diagnosis. One week down... a lot more to go.

We can do this!

Day 5

Yay..it's home. The day went ok.

I don't function well when things are out of place and messy. I know it sounds terrible to even say considering what is happening in our lives. But.. it's true...I don't function. So today I was stressed...all day. :) Not only that, Slade is teething and was not happy all day (which he usually is).

Taleah did pretty well. She is becoming more aware of her "special button". She went potty in her diaper and the toilet...progress. Taking the medicine was a challenge. Morning an evening. We have got to find a solution to that because that is a new way of life around here.

As far as leeping things sanitized, it was a struggle to keep her and Slade apart and keep his hands out her mouth and vice versa. Hope that part gets easier.

We had the home nurse stop by to talk about the upcoming months. She was sweet and Taleah didn't hate her...so that's good!

She played and played as we had family stop by to help out. I can see it in her eyes that she is sick. It kind of seems like it's back to normal life now that we are home. It seems as if nothing is wrong, but then I look at her sweet eyes and it reminds me that my baby has cancer. Wow that was kind of hard to type. BUT she is a trooper. She is so strong.

We have tried to keep visitors to a minimum. People are washing/sanitizing their hands the second they walk in. We are keeping food out for no longer than 20 minutes. We are lysoling everything. We are taking leftovers out of the fridge after 2 days. New way of life :)

As far as me, just a freakin roller coaster! This might sound bad, but I found myself thinking
about people mentioning how strong I was and always had been...I kind of thought that I wish I wasn't or hadn't been strong and maybe this wouldn't have happened. I wished for a minute that it was something I couldn't handle and that way God wouldn't have sent this my way. Not that is all about me because it's not. It's about Taleah, but I hate seeing her suffer. I am supposed to protect her, keep her safe....and I didn't..but this is something I have no control over. On the flip side, I can already see some good that has come from this. People have come together and provided the best kind of service. They will receive blessings from all they have done. People have turned to God that usually don't. Our family has grown closer. There will be more good that comes... I am sure of it.

Coming Home...

We were so ready to go home. Leaving the hospital was bittersweet. We were nervous to leave knowing that we didn't have the medical care right there. I was anxious, scared, excited, sad and really anxious....oh and did I mention anxious...? There is that rollercoaster of emotions again!

When we finally made it to the car with all of our stuff. She was tired and not super happy. That made me even more nervous. She was asleep by the time we pulled out of the parking lot. We met in Draper to pick up Slade from Treena. Fill up with gas, get some caffeine, ect. Scott was trying to get a few things worked out for work. He was on my phone e-mailing while I was changing Taleah's diaper in the back of Treena's car (yeah the whole potty training thing has gone out the door... oh well). Scott walked over (while texting) and hit his head on the corner of the tailgate...and blood starts coming from his head. I take a look..yeah a nice cut in his head. I was so weak at this point.. I about lost it thinking that one more thing had gone wrong. Awesome! He walks away because Taleah starts crying that he is bleeding...again awesome! I didn't know if he needed stitches, but he decided to hold pressure and ice and we would decide when we got home.

The car ride was ok. I was tires along with everyone else. Slade wanted me to hold him, Taleah tried to sleep, and I tried to keep them both happy. Exhausting.

Arriving at the house was a whole new experience. There were so many signs and family members waiting. I was so moved. It was almost as if I wasn't really there...sounds weird I know. She didn't quite know what to do. She is still taking this all in.

I have to say my uncle Casey is an angel. We have wanted to do our backyard for some time. I wanted a place for the kids to run around. We haven't gotten around to it and planned on doing it this fall. While we were away, he worked his butt off and started our yard. He worked and worked and worked! Neighbors, friends and famliy were nice enough to come and help him. Thank you all! We love it and it will be so nice to have some place "germ free" for her to play! YAY! (side note... he said one of the mornings someone called him Gary and he did not correct them....someone must have heard and caught on to that name....so Casey said everyone was calling him Gary and it was too late to correct them...haha...so we laughed saying that there was not some crazy Gary guy..just uncle Casey)

Feels good to be a family and feels good to be home.

Thank you everyone!!! So much was done in our behalf. I will never know who all contributed. Thank you!

Our Stay at PCMC

(had to add this pic to show the love she received)

Side Note... a cousin mentioned to us that she had called to order a gift for her from the gift shop. She said that she told them she would need something for a 2 1/2 year old girl and they responded, "Oh, is this for Taleah?" Pretty cute that they knew exactly who they were talking about. What a loved little girl!

Finally Home.

I had to document the pics from our stay at PCMC.

It seems like forever ago. Seems like we were there a long time. And it's not even 1 week since she was diagnosed.

Thank goodness for visitors. Tay was around a lot. He provided some great dance moves that produced her first smiles since arriving at the hospital.

Glad to be home. Hope we don't have to make another visit as an inpatient!