Clinic

Word of the Day: Superhero

Every day since Lilly was diagnosed we've had a 'word of the day'. It's something we focus on when Lilly is having a hard time. The first day was "Happy." We've had the word "Giggles" and "Smile" and "Joyful." I'll have to post more about the rest of our words... But, it is our goal to have a word of the day every single day until Lilly is finished with this journey. 

Today we went to clinic. It was our first time. We should have been once already, but we kept getting admitted to the hospital. It was nice going to clinic. More like a doctors visit. Lilly had to get her port accessed. She was nervous. But, she did great. We put a numbing cream on her skin over her port just before we left for our appointment so that when we got there, it was numb and she didn't feel anything but pressure when it was accessed. Lilly decided she wants to use the numbing cream and get her ears pierced! Why not, right? We told her doctors that and they told us to patent the idea and make a lot of money off of it!! :) 

After Lilly got her port accessed, she had blood drawn, and then we met with a couple of different doctors. She met with Dr. Doug Fair. He's our favorite. He is so sweet with Lilly. We love him. And then she met with Dr. Mike. He is the head honcho over Dr. Doug. It was our first time meeting with him. He was nice too. 

Dr. Doug - checking Lilly's mouth for sores. That's a side effect from the chemo. :(

Lilly thinks Dr. Doug's hair looks like Prince Eric. What do you think? He said that's the nicest comment anyone has given him! Dr. Doug makes Lilly happy!!

Then we went to the infusion room and Lilly got her chemotherapy. And then we were sent home for the day. It was nice not to have to stay in the hospital, but it makes me sad how Lilly feels. Her tummy hurts her so much tonight. She's in tears sometimes. Say an extra prayer for Lilly tonight. Chemo days are hard on her.

Helping the Cause

I know that many friends and family have been offering help or asking what they can do.  One thing that I have realized is the constant need for blood and platelet transfusions.  Lilly has received at least 6 units of blood and 8 platelets.  I know in the past that people could donate their blood or platelets in Lilly's name. They however, no longer offer that since the blood goes through a very rigorous cleaning process.  So, if there is one thing I may suggest, it is for those of you that are HEALTHY and willing to donate for the cause.  Even if it's just in your area, the blood offered will go to help others that are in need.  One thing I was not aware of, is the fact that platelets only last for 10 days.  May I just give a shout of GRATITUDE to all those unknown donors that helped my Lovely Lilly feel better.  I was just amazed at just how much change was apparent when she received her first blood transfusion.

February/11/2014

Tummy Issues

2-23-14 Lilly started having severe stomach pains Sunday night. So painful that she was wailing and crying. I felt so bad for her. I didn't know how to help her. I called the on-call oncologist. I told them what was going on. They said it sounded like she needed to be seen, but it wasn't an emergency. They told me to call first thing Monday morning and talk to the doctors in clinic. It was a long night. Lilly couldn't pee. She struggled pooping. She just hurt.

2-24-14 I called the clinic in the morning and they decided she needed to be seen. We headed right up there. When they first assessed her, they noticed she had splotchy hands and Lilly said they kind of itched/burned. They said that was most likely a mild reaction to her antibiotic. We stopped that one and they gave her a different one. No more at-home antibiotics. Yahoo! (at least for now) It was a pain. She was also low on platelets, so she got another transfusion. They sent us down to radiology for an x-ray of her abdomen. She had an impacted colon. No wonder she couldn't pee very well or poop. She was majorly backed up. Guess what that meant? Yep - we got admitted AGAIN! 3 times in 12 days.... Really? I'm glad we took her in because she was in so much pain, but I thought ALL Leukemia was more of an out-patient thing rather than an in-patient thing... We needed to get her issue fixed though.

Waiting to get an x-ray of her abdomen.

Lilly had two options of how to get the poop to come out. They could either put an NG tube in her nose down to her stomach and pump her full of medicine that would make her poop, or she could drink a bunch of miralax and wait for it to do it's magic. She chose the latter one. No way were they going to put a tube in her nose. No way. I was surprised and shocked at how much miralax Lilly had to drink. And this was the industrial strength too. Not the kind we have at home. She had to drink 3 1/2 mugs (you know the ones you get at the hospital when you have a baby - yeah like those but just a tiny bit smaller) in a 4 hour period. Holy cow that's a lot. That's a lot for even an adult. But for a little 40 pound kid it's killer. She did it. It was hard, but she did it. We went to bed around midnight after celebrating her success. Guess what? We got woken up again at 2:30 and were told we had to do it all over again. Lilly was so upset. She thought she was done. She kind of had a 'roid rage' where the steroids make her go crazy and she's slightly out of control, but then she started drinking again like a good girl. We couldn't go home the next day until what went in clear - came out clear too. Crazy. Talk about cleaning you out completely. After a painful painful night, she felt much better the next day. She's always had a constipation problem, even before all of this has happened. But, now she also has some medications that make her constipated as well so we have issues. We have to keep up on the miralax at home so this doesn't happen again. Not a fun experience.

There was a little silver lining through this most recent stay at the hospital. Dr. Raetz, one of the oncologists, shared some good news with us. They got the results back from her 8 day blood test and it showed no detectable signs of Leukemia!! That was music to my ears!! She said it's very rare to have a negative blood test on day 8. Usually it's around day 28. We are so grateful for the prayers that have been said on Lilly's behalf. Since there is no detectable sign of Leukemia in Lilly's body, you can say she's in remission. But, our journey is still just beginning. We still have to do chemo treatments and spinal taps and bone marrow biopsies for the next 2-2 1/2 years so the leukemia doesn't come back. Her body still doesn't know how to make the right kind of white blood cells yet. There's still much to be done, but we are grateful we are heading in the right direction.

FaceTime with Primary

We obviously stayed home from church and will stay home for quite a while. But, I have an amazing husband who is very tech savvy who decided we can still have Primary from home. We both have iPads so we were able to FaceTime with Primary. Lilly could hear them and they could hear her. She could participate if she wanted to. I loved everything about it. By the time it was class time, Lilly was exhausted and needed to sleep. Maybe next week she might have a little bit more energy and can participate in class. Technology is amazing and I am very grateful we have it so Lilly can still have a few 'normal' things in her life during this hard time.

Hair Cut

The morning before Lilly's hair cut appointment, Jay shaved his head for Lilly. Lilly helped. It was good for her. It made her happy that she wasn't alone. What a great dad! He's going to keep it short as long as she is having her treatments. Lilly says they can grow their hair back together when we're all done. :)

We found this amazing place called Creative Wigs that would help us with Lilly's wig. She decided to donate her own hair to herself for her wig, along with a few other family and friends who donated their hair to Lilly as well. They will forever be angels to us. Lilly was nervous to cut her hair. I would be too. Our good friend in our ward Alesha came with us to get Lilly's hair cut. We were so glad she was there. She is an amazing lady and I'm grateful for her support.

Lilly did better than I expected. She said she didn't want to look in the mirror when they were cutting all her hair off. I don't blame her. Michelle, the cosmetologist, was really great with her. We ended up leaving some length on top to make things a little easier for Lilly. We had enough hair donations that we would still have enough for her wig. Her hair is being sent to China to be made into the wig. So, it will be a little while before we get it back.

Lilly is a brave girl. She amazes me more and more every day with her strength. She has a great relationship with her Heavenly Father and knows that when she prays to Him, He will help her. I am grateful that she has a testimony of prayer. It will help us get through this trial in our lives. One day at a time... One day at a time.

Lilly got to try on some wigs.

And then the cutting began...

Last piece.

There's a smile under that mask. Can you see it?? :)

FEVER :(

2-18-14 FEVER... The dreaded word. The word nobody wants to hear... Jay went back to work. I was hoping I could hold the fort down. My mom and Jay's mom came over to help where they could. Lilly wasn't feeling well. I could tell something was off. It's that 'mom instinct'. I took her temperature. 100.7 I called the clinic. They said to watch her for an hour and call us back. It kept fluctuating but stayed right around 100. Up and down, up and down. I was getting nervous. I tried calling the clinic back, but I kept getting the run around. I was getting frustrated. They finally called me back and decided since Lilly was so new into the "induction phase" of her chemotherapy, that she needed to come in. But, since it was so late in the day she had to go through the Emergency Room instead of come up to clinic. I was upset because if they would have called me back when they were supposed to, I could have gone to the clinic. Oh well. It's over. I can't dwell on it. When you have a child that has a compromised immune system and you have to go through the ER, you call ahead and pre-register so they don't have to stay in that awful waiting area with all the other sick kiddos. Jay's mom took me and Lilly up to Primary's. My mom stayed with Emery. Lilly was scared. I was scared. We called Jay and he left work to meet us there. They accessed Lilly's port for the first time which was a hard thing for her. But, she's a trooper. She did great. They immediately started her on an antibiotic - no questions asked. They don't even wait for any tests to come back. When leukemia patients have a fever you try and get antibiotics in them within the first hour they are at the hospital. Then, they gave a second antibiotic. And a third. And then we were told a room would be ready for us soon up on the fourth floor. Wait.... What? I didn't know we were being admitted!! Lilly was upset to have to stay in the hospital again. So were we. But, our cute friend Michalla found out we were back in the hospital (from facebook) and drew a picture and wrote a letter for Miss Lilly. She had a nurse run it down to us. That was so so sweet of her. It made Lilly happy, if only for a small moment. 

Lilly was quarantined to her room, but Michalla came and drew on her door! She knows how to write and draw backwards so Lilly could read it on the other side. This made Lilly smile! She thought this was so much fun!!

Michalla and Lilly took turns drawing this picture together. I love it! Please keep Michalla in your prayers too. She has a long road ahead of her too. She is one of our angels and we care about her so so much!!

2-20-14 Since we were already in the hospital for a few days, Lilly's doctors decided to move up our chemo day and spinal tap so we wouldn't have to turn around and come back. That was nice of them. I was nervous for Lilly to have her spinal tap. It was hard on her the first time, but I think it was from her bone marrow biopsy that was hard. This time, we go to the RTU (Rapid Treatment Unit) instead of the operating room. She's not intubated, (no tube down her throat) but there is still an anesthesiologist with her the whole time while she's sleeping. We were able to go into the exam room with her while they put her to sleep. Lilly and I sat on the bed. I held her tight. They gave her some medicine and she immediately went limp. That was a little scary. They sent us out of the room and came and got us when she was in recovery. During the spinal tap, they check her fluid and also give her chemotherapy in her spinal fluid. She did amazing. She was super hungry when she woke up. She ate a bag of cheetos, a bag of chips, and a slushee. Those steroids finally started to kick in and she's eating like a teenage boy. It's crazy to see because she normally eats like a bird. But, it's only for a couple weeks and then she's off the steroids. We got released to go HOME! It's so nice to be home. But, we had to go home with IV antibiotics. I didn't know when you become a parent with a child that has cancer, you also become a nurse too. Scary! Good thing we have Gordon around. Jay's brother-in-law is a Life Flight Nurse and he has helped us so much. Stressful... So stressful.

Our Social Worker Kristen brought by some hats for us to try on when she heard we were back in the hospital. We decided we liked this one the best. Isn't she beautiful?

Heading down to the RTU for her spinal tap and chemo. Mom gets to ride in the wheelchair with Lilly. It makes it a tiny bit easier for her.

Child Life Specialist Hilary is with us keeping us preoccupied while we wait to talk to the anesthesiologist.

I had to stay preoccupied while Lilly was asleep having her procedure done. Sara Bear had a rip in her leg so that kept me busy. I needed it. I was an emotional mess!

Right after Lilly woke up she was so HAPPY! And she was so HUNGRY! She ate a bag of cheetos, a bag of chips, and a slushee! I love this girl so much!!!!!

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!