New Portacath & The Beginning of Consolidation

Yesterday Tiffany took Lilly into the Riverton primary children's to have labs done to verify if surgery would happen today or not.  Lilly, rightfully so, was scared to have more blood drawn, but she's such a tough girl and just tells the nurse "don't count, just do it" as she turns her head away.

Turns out her numbers were good, her ANC was 1,000 which it needed to be 750 to be approved to do the next round of chemo.  So, this morning we left our house, my mom Claire stayed to watch over Emery, to be at the Hospital by 7:30.  We went to clinic to get an IV placed.  Again, Lilly is so brave to get poked yet again.  While at clinic we approved Lilly to be apart of a study to see which method of chemo is better in the overall long term outcome, the standard IT or the ITT intrathecal chemo (given into the spinal fluid).  She was randomly chosen to do the standard IT method where methotrexate is solely used intrathecally. Whereas the ITT method involves two additional meds given intrathecally.  This study is to determine which method has the best overall outcome at preventing relapse in the spinal fluid.  Needless to say it's been emotional reading all about the risks, possible side affects, and possible long term affects of all the types of Chemo given.  Especially knowing that all these are experimental and they do not know if they will have lasting affects on Lilly.  That being said Lilly was given two types of Chemo through her new IV line and we will be administering them at home as well over the next three days.

I can't begin to say how nerve wracking it is to play the hurry up and wait, wait, and wait some more game today has been.  After she finished up her batch of Chemo we headed down for the first time, thus far, to OUT PATIENT SURGERY, where we signed in and and played the waiting game. Then we went to the Prep room and talked the nurse, surgeon, and surgery nurse. Next it was on to the Pre-Op room to see the anesthesiologist and wait some more, till they took her back to the OR.  It's always hard watching her go back by herself, fortunately the anesthesiologist gave her some Versed and had her play on his iPhone a puzzle game.  Now its our turn to wait, wait, wait! The surgery went well. The surgeon was able to place the new port in the same place as the first using the same incision.  She also received her spinal tap and methotrexate intrathecally. This time however, both Tiffany and I were able to go back to the recovery room.  I went back first and gave Lilly her recovery gifts, a Frozen blanket and heart pillow.  Something I started for her first surgery on valentines day.  Yet again we waited and waited till Lilly was coherent, eating and strong enough to go home.  Lilly was super excited as were Tiffany and I to go home and not be admitted like every other time.

It sure is good to be home with our lovely Lilly.  I am so amazed at how happy and positive she is through all of this.  Sure she's been scared and anxious to do things and who wouldn't be but, she is an inspiration of strength to me.  Please continue to pray for her port not to get infected and that she will handle all the Chemos well with minimal side affects.  I can't thank everyone enough for the prayers, help and sacrifice given. 

Lilly showing her "Braveheart" in the recovery room.

Ye, "...are willing to bear one another’s burdens, that they may be light;

Yea, and are willing to mourn with those that mourn; yea, and comfort those that stand in need of comfort, and to stand as witnesses of God at all times and in all things, and in all places that ye may be in...

FEVER.... Again?

Back already??  This will make our 4th admission in 2 1/2 weeks.  On Friday, Lilly had chemo for the first time at clinic. Which went surprisingly well. We finished up there after 2 1/2 hrs. Which is great compared to all previous hospital visits.  We went home and things were fairly normal. Lilly was tired but that's expected after chemo.  When Lilly went to bed around 12:30am her temp was 99.6, nothing quite worth worrying..... Yet.  Then Tiffany woke up with Lilly at 2:45 to take her potty. When she climbed back in bed she decided to check her temp again.... It was 101.9, which means it's straight to the ER to get antibiotics and admitted.

Love the Mowhawk!!! ...two thumbs way up

With Lilly having a low immune system or (her ANC counts are low) they take us right to a room where they quickly access her port in her chest with a 22 gauge 3/4" power straw. Shortly after, they begin giving her antibiotics.  This time however the RN was having a hard time getting the port accessed to draw blood.  After a little trial and error she called another RN to help.  She ended up having to insert the needle (straw for Lilly's sake) a little deeper.  After that she was running great. 

After waiting for our room to be ready and visits from the ED docs, we were wheeled up to the 4th floor.  Their main concern with fevers is bacteria so they run cultures with her blood upon arrival and pump her body full of antibiotics. Now if a fever is no longer present she can possibly go home after 24-48 hrs if cultures are negative.  However, this time her fever did not break so easily.  As a matter of fact it would only go down if they gave her Tylenol and after it wore off it would spike back up.  The highest it ever go to was 102.2.  One thing we as parents have been informed not to use at home is Tylenol or any fever reducer.  They don't want us to hide any chance of there being a fever that would stop us from coming into the hospital. So, after a full day of ups an downs with fever and us being concerned we learned that she'd stay here at least 24 hrs after her fever breaks with no Tylenol in her system.  

Play legos for hours on end.  We built soms neat things.

We were getting worried when Lilly's fever wouldn't break without the Tylenol. Tiffany was especially worried when I asked what the worst possible complications would be with a bacteria - which would require the port to be removed and let the site heal and try again.  Lilly's fever finally broke on Sunday around 3:30 pm which gave us hope that things would get better and she could go home on Monday if it would hold out.  That evening things were still looking good with no fever so I went home to sleep and go into work on Monday.  Monday morning Tiffany called me to inform me of a DNA test done on her blood from Saturday which showed an infection.  Since the DNA testing is such a new method they were unsure how to react with the info given since it does not specify a bacteria type, just that there is one.  So they were waiting for the cultures to grow the bacteria which eventually was identified as pseudomonas.  Tiffany later informed me while at lunch that the doctors determined it would be best if they removed her portocath in her chest since this type of bacteria likes to cling to plastic surfaces and can get really bad.

My Lovely Lilly still shines through, in spite of all the pain.

What a devastating blow for Lilly, who thought she was going home that day 
since she had no fever.  I unfortunately was not there but, I am glad Primary's has wonderful Child Life Specialists like Hillary to help explain things to her. I know it was hard on Tiffany and that she has been especially strong for Lilly over these last few weeks.  Lilly took the news with some sadness and tears, but surprisingly well.  After Lilly was informed she asked Tiffany what I would surprise her with in the recovery room.  Since I gave her a blanket and heart pillow for her first surgery, she now expects it for all the others.  

Tuesday was a hard day for Lilly since she had to go without food and water for so long.  She was originally scheduled to go in at 1:45pm so she couldn't eat after 3am.  At 10am we were informed that she was bumped back to 5pm, but still meant she couldn't eat anything.  Her doctor asked the OR if they could move her up to an opening closer to 1pm.  We ended up going down at 1:30 and Hillary came with us to help keep her calm.  She was still very apprehensive so Tiffy and her watched Frozen to help her relax.  She was so very brave and did much better than the first time.  Sure it helped to get "Versed" to have her sleep before she entered the OR. 

The surgery went very quickly.  The recovery however, took longer than the actual procedure.  Needless to say I got Lilly a surprise for the recovery room. What can I say, I'm wrapped around her finger.  I got her a new Frozen shirt, beanie, and a friendship heart necklace for her and Emery. She did such a good job and still amazes me with her happy spirits. She did so well and wanted to start eating right away because she was SO hungry.  Little by little she was able to eat food. 

What's not love about this Beautiful girl

So, the next step is to wait a day and then on Thursday place a temporary Picc 
Line in her arm for 2 weeks.  Then in 2 weeks while they have scheduled to do the next bone marrow biopsy, they will place a new portacath in her chest. Hopefully she will have better success at staying healthy.  

Thanks for your continued prayers.

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!