I should have started sooner...

I should have started this blog sooner, but life has been a little bit crazy these past two weeks. I can't believe it's only been two weeks since Lilly was diagnosed with Leukemia. It feels more like two months. I've heard it's good to keep a blog when going through something like this so people can stay updated with what's going on with Lilly and her treatment. And then I won't have to repeat myself 20 times a day, the same story over and over. I'm going to try and quickly play catch up. I know I won't remember all of the details, but I want to document at least some of it...

Lilly was sick around Christmas time and the whole month of January. I'd take her into the doctor and they would tell me it's a virus and send me home. She had a low grade fever, no energy, and her body ached. It would come and go. I kept thinking she kept getting sick from the kids at school. I would get so frustrated when she'd get sick again. She got a cough. We checked for pneumonia - negative. She had severe back pain and did an x-ray - negative. We tried an inhaler to see if she had asthma like her sister - nope. We tried antibiotics because both Jay and I got sick with pneumonia in January and we figured she had it too - not that either. We were getting very frustrated with this whole "virus" thing and just thought Lilly was overreacting to it all.

One night, I was praying for a long long time. Jay thought I had fallen asleep on my knees. I hadn't. I just needed to know what to do with my Lilly. When I finished my prayer I stayed there and just listened. And clear as day I heard the words "Lilly has Leukemia." I got so mad! I didn't believe it. I chalked it up to the fact that I have anxiety and I was thinking of the worse case scenario.

The next night I prayed again. Asking my Heavenly Father to give me a sign. I needed to know if I should take Lilly back into the doctor. That night she started throwing up - a new symptom. That was my answer to my prayer. I knew I had to take her in. The next day she started with tiny red spots on her lower legs and under her eyes.

2-12-14 I took Lilly in for another doctor visit. This was the 4th visit in the month of January for us and we had already been to Primary Children's in Riverton for x-rays twice. I felt like a frequent flyer. Her doctor asked me her symptoms and was very surprised she was still sick. He ordered blood work. He said he was going to rule out the scary stuff, but she might still just have a virus or she might have mono. We headed to Primary Children's (3rd time in a month) in Riverton for blood work. Jay met us there. Lilly was so scared. She hates shots or needles or the even the doctor. Jay was brave with her. She did it! We went and got a milkshake and fries because she did so good. :) And then we went home. The doctor said he'd call with the results within a couple hours.

3 hours later the phone rang and it was Lilly's doctor. My heart started racing. I couldn't answer it. I didn't want to hear what they were going to say on the other end of the phone. I made Jay answer it. It brought him to his knees. He kept sending me out of the room so he could finish the conversation with Lilly's doctor. He got off the phone... And then he told me... Lilly has Leukemia. No!! No!!! Nooo!!!! How could this be? How could she? Why? What did she do to deserve this? Why? Why? WHY?

We had to be admitted that night to Primary Children's Hospital. We were told to pack a bag for Lilly and head right up there. We didn't know where to start. What do you pack for a six year old who has Leukemia? I think we packed pajamas, her toothbrush, and a couple of stuffed animals. We didn't think about packing anything for ourselves.

I couldn't be strong for Lilly. I couldn't. I couldn't stop the tears from falling. My heart was broken. I wanted so badly to trade her places - to take the hurt and pain from her. I felt helpless. She had another blood test which would determine what type of Leukemia she had. We wouldn't find out what it was until the next morning - longest night of my life. I prayed all night long for the easier kind of Leukemia to fight. She also received a blood transfusion and a platelet transfusion that night. We had lots of visitors. Lots of tears. Lots of prayers. Lots of support. But my heart was still broken. Lilly was scheduled for surgery the next day to place a port, do a bone marrow biopsy, and a spinal tap.

2-13-14 We found out Lilly has Acute Lymphoblastic Leukemia or ALL. The "good kind" of Leukemia. Not that you want any type, but if you had to choose, this is the one we wanted. This is the one we were praying for. It has a survival rate of 89-95%. That sounds promising, but still not something I want to have my little 6 year old daughter have to go through. Treatment lasts between 2 - 2 1/2 years. That's a long time. She's going to be baptized before she's finished with treatment. Crazy! Her surgery kept getting bumped because we were admitted so late in the day the day before. We decided to let Lilly eat and we scheduled it for the next day. She was so happy to eat!!

2-14-14 Happy Valentines Day. Not a very happy one if you ask me. Lilly had her surgery. She was so scared. I rode down to the operating room with her in her bed. Her body was shaking because she was so scared. I was scared for her. The anesthesiologist gave her something to calm her down. Didn't work. He suggested for her next surgery to have them give her something BEFORE she comes down so it's easier on her and on us too. It was so hard to give her a kiss goodbye and walk the other way so she could go into surgery. My heart broke again. The night before (Thursdays) is mutual night. Jay is in the Young Men's. It was a combined activity and they focused on Lilly. They "heart-attacked" her. They all wrote her Valentines and get well letters and well wishes. That was so very nice of them. My mom, Jay's mom, Em, and I decorated Lilly's room while Jay was still in recovery with Lilly. It brightened her day. It was beautiful. So many people rallying for Lilly. It was good to have that support - even if it was just purple and pink Valentines all over her wall. You could tell that Lilly was loved and that's all that mattered. 

 Jay got Lilly smiling and happy just before surgery. It was so nice to see.

One of my favorite pictures Lilly drew in the hospital. We were trying to think of happy things!!

Emery LOVED putting up the Valentines on the wall. She thought she was so BIG!

2-15-14 Lilly started going stir crazy by this day. She has no immune system, so she's quarantined to her room. We got permission to wander the halls in the middle of the night, with her mask on, when no one was around. This made her so happy! This was the first time we said hi to our friend Michalla. (You say her name like Mikayla, but with an 'sh' Mishayla) But, we didn't get to know more about her until the next night. We decided before our fun adventure in the halls, we would have the dreaded talk with Lilly about her losing her hair. I didn't know how I was going to tell her! Her hair means so much to her - more so than the average little girl, I think. She's always wanted to be Rapunzel with long long hair. I always told her she could have as long of hair as she likes as long as she let me brush it! :) When we told her, she was sad. But, not overwhelmingly sad. We cried together. We told her she would be just as beautiful without hair as she is now with hair. I felt very strongly from the moment we knew Lilly would lose her hair, that she needed a wig from her own hair. I think it is a tender mercy of the Lord that she chose to donate her hair in December to Locks of Love. She chose to give some of her hair to a little girl that didn't have any. And not even two months later, she's losing her hair as well. But, having the option of donating her hair to herself has helped, I think. Our amazing social worker Kristen, helped us find someone in Utah that helps kids with cancer make wigs from their own hair. It's quite costly, (because it's shipped to China to be made), but I didn't care. This was something Lilly could choose to do. She can't make very many choices with this whole process: her treatment plan, or staying in the hospital, or losing her hair. But, she could have a choice in this. And then our friends and family stepped in... So many people reached out to us and said I want to donate my hair to Lilly. When making a wig it takes more than just one hair cut. Lilly's hair is so thick that it accounted for two. Then we had Lilly's cousin Sydnee, Jay's cousin's wife Jessica, my cousin Sabra, a friend in our ward Kristine, and another friend Becky and her daughter Kaylee all donate their hair to Lilly. We have such awesome support for Miss Lilly and our family. Thank you! Thank you! Thank you!

 It was hard for Emery to be at the hospital. Obviously she doesn't understand what's going on, but whenever someone was leaving Lilly's room, she wanted to go OUT too! 

They have therapy dogs that come and see patients and it has been really great for Lilly. This particular dog Diva, came up to the 4th floor just to see Lilly. This is Lilly's favorite therapy dog she's met so far. I'll have to do a whole post just on therapy dogs... We have met a lot!

2-16-14 We had to get Lilly's blood pressure under control before we could be discharged from the hospital. I think it was so high because she has had so many blood transfusions and platelet transfusions that her little heart had a hard time keeping up with it all. Poor thing. :( That night we had a "date" with Michalla. We met at the Kid's Corner at 10:00pm. Lilly brought a keyboard that her cousin Megan let her borrow while we were in the hospital. Lilly played "Do You Want to Build a Snowman" from Frozen for Michalla. Michalla gave Lilly an orange Leukemia pin. They bonded. It was so nice to see. We will be forever friends with her. We love her and pray that she gets better too. Michalla is 19. She has AML. This is her second go-round with Leukemia. She found out she had Leukemia again two days before her mission farewell. She was supposed to serve her mission in Tennessee. But, she has another mission right now... To kick cancer's butt!!

We are grateful for the amazing nurses and techs on the 4th floor. This is Sara. We had her for 3 nights in a row and we love her! Lilly named her bear Sara Bear after her. She is such a positive uplifting person and we are happy she was one of Lilly's nurses.

Lilly is supposed to bathe and wash her hair every day to get any germs and bacteria off her body. Since she has no immune system, she could get sick just from germs that are on her body. Nancy helped us wash Lilly's hair in her bed. Lilly said it was like she was at the beauty salon!

2-17-14 I don't remember much about this day except we got to go HOME! I was nervous. I didn't want to screw anything up. When we got all of Lilly's medicine from the pharmacy, I was blown away. She's had one antibiotic her entire life. And now I was coming home with about 10 different meds she needed more than once a day. I was so overwhelmed and I was for sure I was going to screw it up. When we got home, our house was so clean. Some friends from our ward cleaned our house top to bottom. It sparkled! Lilly has no immune system, so the cleaner the better. I checked on her a lot that night. Making sure she was still breathing. It was like I had a newborn all over again. Thanks to my parents who kept Emery with them through this whole ordeal. We couldn't have done it without them. The plan now, was to stay home and feel better and go back into clinic on Fridays for chemo. Pretty simple. I could handle that. (if only it were that easy.)

The guys from Jay's work bought her an iPad mini so she could stay busy when she has to get her chemo. That was so kind and thoughtful of them. As you can see, she's pretty excited to have her very own iPad! :)

This is Hilary. She's the Child Life Specialist up on the 4th floor and we love her. She has helped explain hard things to Lilly and we are grateful for her. She has a tough job, but she's good at it!

Some pictures of Lilly's decorated room before we were discharged. The nurses say they have never seen a room so decorated with purple and pink before!! Thank you for all the love!