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!

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!

*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!

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.

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...

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!