Monday, March 31, 2014

There's a Monkey in My Chair!

 There's A Monkey in My Chair! We heard about this awesome program from one of the Child Life Specialists at Primary Children's Hospital. This Monkey (whom we've yet to name) gets to go to school for Lilly. He sits in her spot in class and he gets to go where Lilly goes at school - P.E., Library, Music Room, Field Trips, etc. It's for the kids in her class to realize that she's still around, but she's just too sick to come to school. He comes with a backpack and Lilly's classmates can write letters to Lilly or send pictures, and then Lilly can respond back to them. I think it is a great way for Lilly to stay connected with her school even though she can't go anymore.

Monkey in My Chair is supported by The Cure Starts Now Foundation. It is a free kit they offer to patients who have a chronic illness and will be missing a lot of school. Lilly was so happy when he came in the mail.

Any suggestions on what we should name him? I think he looks like a him... I guess I could add a bow and make him look like a her...?

Saturday, March 29, 2014

New Flyer

Millie's Princess Foundation revealed the flyer to advertise the Prince and Princess of this years 5k Run/Walk.  Couldn't be more grateful for the wonderful things they've done to help Lilly be a Princess. 

Love my two beautiful Princesses

Tuesday, March 25, 2014

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...

Sunday, March 23, 2014

Princess Lilly

On March 18th Lilly was chosen to be the Princess for the Millie's Princes Foundation 5K Walk/Run. We are very excited and grateful for this opportunity. Lilly is pretty happy that she gets to be a "real princess!" We are hoping that a lot of our family and friends sign up and come out to support our sweet Lilly. Mark your calendars: the run will be held on June 21st at Sugarhouse Park. It starts at 7:45am. Sign up to support Princess Lilly. Thanks to Lori Johnson for helping Lilly become the princess we already knew her to be.

If you sign up before April 1st, you get an EARLYBIRD special and can save 20% on your entry fee.

Thursday, March 20, 2014

Counts Are Too Low...

This morning we went over to Riverton Primary Children's Hospital to get a CBC (Complete Blood Count) to see where Lilly's numbers are at. It's been so good to see her have so much energy. I haven't seen her like this since way before Christmas. The next spinal tap with intrathecal chemo is Count Dependent. The oncologist just called me with her results and her numbers are too low. :( I was convinced her numbers would be sky-high. They said most all of her numbers are great, but it's her ANC (Absolute Nutrophil Count - the white blood cells that fight against infection) that needs to be higher. This morning Lilly's ANC was 594 and they need to be at least 750 for the next spinal tap. So, we will wait and do another CBC on Monday and if her counts are up, then go ahead with the procedure on Tuesday. She's not only getting the intrathecal chemo, but she also needs surgery again to get her new port put in. It's hard to mentally prepare for the next step and then find out it's not happening, and then it's more waiting! Pray for Lilly's counts to go UP!

Monday, March 17, 2014

Picc Line & Patty's Day

Lilly finally finished her antibiotics! Yay!! Since she no longer needs her picc line, our home health nurse came over yesterday and took it out. Lilly was extremely nervous. When they put her picc line in she woke up during the procedure and it wasn't a very good experience for her, so I can see why she was nervous to have them take it out. But, she was a trooper. After all was said and done she said the worst part of getting her picc line taken out was the sticky tape. This Thursday, we will go in and have a CBC done (Complete Blood Count) to see where her levels are. This next spinal tap they are doing on Friday will be Count Dependent. If her levels are "good" (I'm not sure what the "good" level is they are looking for, but that's why I'm not the doctor) then she will have a spinal tap and have surgery to get her new port. If her levels aren't where they need to be then they push things back another week. I think that's how this whole next "phase" will be. Everything being Count Dependent. I can't believe it's only been a month since her diagnosis. It feels like forever. But, Lilly is a brave brave little girl. She most always has a smile on her face and she is one of the strongest girls I know.

Lucky the Leprechaun visited our house! It's a good thing Lilly reminded me about the Leprechaun visiting last year or he may have forgotten to come!! ;) One of the traditions our Leprechaun does each year is he pees green in our toilet and turns the milk green too! (but I'll spare you the pictures:)

Thanks Aunt Yvonne for the Irish attire! Do you see the Leprechaun footprints on the ground?

Emery didn't care much about the treasure hunt we went on, but she sure loved the prize at the end... COOKIES!

When Lilly found her treasure, the first thing she said was, "Yum!!! Oh.... I bet they aren't gluten free." :( YES THEY ARE! We have a smart Leprechaun that lives at our house!! 

Friday, March 14, 2014

Chemo and the RTU

Today marks the end of the induction phase, which also means she goes into the RTU (Rapid Treatment Unit) where she had 3 procedures done.  The day first started with us going in a little early to visit with Lilly's friend Michalla who has a different kind of treatment and has to stay at the hospital longer.  So we spent some time with her to help lift her spirits.  While we were there Michalla was so nice to paint Lilly's fingernails a lovely purple with sparkles and flowers.  We then proceeded to the clinic where they checked Lilly's CBC and ANC levels (Complete Blood Count, Absolute Neutrophil Count) to see if she'd need a blood transfusion before she went to the RTU.  Turns out she's doing great. Her platelets were at 444 (they get transfusions at 20) and her ANC reached 900 (Since they first started Chemo she's been at 0 until the last 2 weeks she reached 100) and she didn't need a blood transfusion.  Her ANC represents her good mature white blood cell count. A normal persons ANC ranges from 1,500-8,000.  So, she's still at risk but it also means she can FINALLY go out of the house (With caution of course).

Once we finished with the Clinic it was time to go down to the RTU.  Lilly was very scared and emotional about going to sleep and rightfully so.  During the placement of her PICC line she woke up and remembers feeling them adjust the catheter another two more times before it was set correctly into her heart. The first two attempts went up her neck instead of down into her heart.  Needless to say it was a traumatizing thing for Lilly to handle, waking up during the middle of something like that.  She expressed her concerns to the doctors and nurses and they ensured her that it would not happen in the RTU and that they use a different and stronger medicine to keep her asleep.  Even still she was very anxious to go but, of course Lilly being the brave girl she is went in with her mother.

The procedures went rather quickly 20-25 minutes, hence the name Rapid Treatment Unit.  While she was in there she had a spinal tap, bone marrow aspirate, and intrathecal chemo (Chemo is introduced to the body via the spinal tap).  We were then able to go into the recovery room and help her wake up.  It's always SO HARD to see our lovely Lilly do so many hard hard things.  

We were actually surprised at how well she did.  She even wanted to go back up to Michalla's room to spend more time with her.  But, while we were waiting to find out if we could we found the piano and Lilly was able to play the first part to "Let it Go" from Frozen.  She's getting to be so good at the piano that a man came around the corner to see who was playing and was surprised to see 6 year little Lilly at the keys.  And to think she's only started learning it this week. We'll have to post a video once she has learned the rest.  Afterward we were able to spend some good quality time with Lilly's SMAWESOME (Super Mega Awesome) friend Michalla where we did more nails, played with plush blood cells and drew pictures on her window.

We Sure LOVED spending time with Michalla

Then it was time to come home but, like I mentioned we were now able to go outside "without a mask!!!" says Lilly.  Since it was such a beautiful day we took Lilly on a walk around the block while she rode in a wagon.  How great was that to end a hard day with fun things to do.

For a good source of info on ALL Leukemia.

Thursday, March 13, 2014

Hair loss...

When hearing your child has cancer and they have to go through chemotherapy to treat the cancer, one of the first things you wonder is, "Will she lose her hair?" Yes. Yes she will. I think this part of cancer treatment has been one of the hardest for us. Not only for Lilly, but for Jay and I as well. To watch Lilly change:

                   From this...                               To this...

                  To this...                                    To this....                                                       

All within a one month period. It has been quite the transition for all of us. Last night Lilly asked us to shave her head finally. She was afraid of the shaver in the beginning, but she got tired of losing so much hair and having it be so itchy. Just before bed she hugged me and cried, "Mom, I miss my long hair!" That tore at my heart strings!! :'( I feel so sorry for her. She still wants to be girly. And pretty. AND SHE IS!! But, it's hard to convince a six year old that even though she looks different, she's still beautiful. She's still the same Lilly on the inside. So, when you see my Lilly, make sure you tell her how beautiful she is - even without hair.

Tuesday, March 11, 2014

Do You Want to Build a Snowman?

Lilly has been going a little stir crazy staying in the house all the time. When we saw that it was snowing this morning, we decided to have "snowflake" be the word of the day. It snowed enough that we brought some snow inside and built a snowman indoors. It only lasted for a few moments, until it melted, but it sure was fun!!

I had to tell Lilly not to eat the snow - even though she really wanted to. We wouldn't want her to get sick from the snow. /:

But we couldn't stop Em from eating it!!

Do you want to build a snowman? C'mon let's go and play!! I'm glad that Lilly can find happiness through all of this. It's hard being so sick and our journey with Leukemia is just beginning. I hope she can keep this positive outlook for a long long time. She helps me to be strong. I love you Lilly!

Saturday, March 8, 2014


We've been keeping Lilly pretty isolated ever since her Leukemia diagnosis - for good reason. Her ANC (Actual Nutrafil Count - or good white blood cells that fight off infection) are ZERO. That means, anyone with a tiny bug or sniffle or cough could give it to Miss Lilly. It's a scary thing. But, we also have to think about Lilly. She's a social butterfly who loves to have friends. She needs some socialization with others besides her parents and grandparents. 

Last night, our next door neighbor Sydnee came over to visit with Lilly. They are good friends. Sydnee would always wait for Lilly at our house in the mornings so they could walk to the bus stop together. Sydnee has kind of taken Lilly under her wing and made "going to school" not so scary for Lilly. It was so good for Lilly to play with Sydnee. She was so so happy! They read books together, made a craft, and watched "Frozen." I haven't seen Lilly light up like that in a long time. Thanks Sydnee for playing with Lilly! You made her night (and mine too)!!!

Friday, March 7, 2014

Therapy Dogs

We were able to have therapy dogs come visit us while we were in the hospital. That brought joy to Lilly. It was something she looked forward to. We started collecting "trading cards" that some of the owners would give to us.

Diva was Lilly's favorite dog. She was so so sweet. Very mellow. And just wanted to be cuddled. Her favorite treat was carrots. :)  We learned that Diva has been in two movies. We want to find out which ones and watch them. 

We thought Otis was a huge dog until we met Happy. Happy is a 220 pound Newfoundland and isn't even 2 years old yet. He walks like a bear.

We also liked Panda a lot. He reminds us of the Shaggy Dog. Therapy Dogs have to go through training and an obedience class before they can come into the hospital. We are grateful for the volunteers that take time out of their day to bring a little bit of happiness to us. I'm sure we'll meet more dogs as we continue this journey with Lilly. 

Thursday, March 6, 2014

Picc Line

The IV team came up to place the picc line in Lilly's arm. It is so hard to watch her have to go through all of this. We are very grateful she's being taken care of, but oh how I wish it were easier on her. She was nervous and crying when they gave her some medicine to help relax her. It didn't help - so they gave her the strong stuff. It makes her eyes shake which means the medicine is working. Then they sent us out of the room and told us they would be finished in about 45 minutes. 

The word of the day today is HOME. We are hoping to go home today. After her picc is placed, she will get chemo a day early so we don't have to come back to clinic tomorrow. I just want to go home and have Lilly be a "normal" ALL patient. This is supposed to be an outpatient treatment. No more being admitted in the hospital. Hopefully we are just getting all of the bumps out of the way now and we can get into more of a routine soon.

Wednesday, March 5, 2014

That We Might "Not . . . Shrink"

Possibly my most favorite picture of my Lovely Lilly
Over these last few weeks my family's world has been turned upside down in a matter of seconds. I have wondered why such a tragic thing like this would happen to my beautiful and talented little Lilly. I know that this may sound like a doting parent who's very proud of his daughter but, I can't help but look at her with awe and wonder at the many gifts and talents her little body has been blessed with from her heavenly father. If I may, I'd like to illustrate some moments of her examples and lesson she's shown me.

Lilly has shown me what it means to be a friend through showing kindness to everyone.  Her teacher told us this story: At school, on their birthday, the day is theirs to do what ever they want and to invite their friends to participate in certain activities with them. We were informed that during Lilly's special day she made sure that every student was able to participate. The teacher also informed us that Lilly was the only child to ever include everyone and not just her closest friends.

Lilly, is rarely shy and will talk to any random person and find some way to make them smile even if that means she points out something she thinks they shouldn't be doing... she'll still bring a smile.

Lilly Is always willing to serve others.  Not only has she helped me fix the car, mow the lawn, and pick up dog poop (with her own shovel), but there is a boy at school (Britton) who has spina bifida and uses crutches to help him walk, which she befriended and is always so kind to help him in anyway she can. Now if only we can get her to clean her room.

Lilly is very intelligent and mature for her age or as her oncologist Dr. Doug stated "she's very Precocious". I also think she is very loquacious. The day before she was diagnosed with Leukemia we had parent teacher conference. The teacher informed us that Lilly has passed off everything she needs to complete kindergarten. She also told us that Lilly's reading and other skills would qualify her to enter a gifted language immersion class for next year. Unfortunately she may not be able to attend.

Lilly's ability to stay positive in spite of all the pain. I can't tell you how many people flock to her in the hospital. Because when their with her in the room she always seems to make everyone feel happy. I'm not just talking about her nurses. Even people that are not scheduled to see her will make time to stop by because as they say "she's a special girl".

Lilly's many talents include:

Piano (she just can't learn fast enough)
Artist (check out her Olaf)
Memory (trust me don't play the memory game)
Helpful big sister

Now keep in mind I understand she has her faults too but, most of which I'm sure she inherited from me. But, she inspires me to be better than I am. Now the thing that I have been struggling with the most is understanding what God has in store for her and what he wants us to learn from all this. I have already seen how strong she Lilly is and she gives Tiffany and me strength to carry on. But, do we have the faith to accept God's will no matter the outcome? Not that I don't have faith that she can be healed but it still weighs heavy on my heart. So, while pondering on Lilly and our situation I clicked on a CES talk to listen to since I'm home alone. It was the first random talk I clicked on and I couldn't have pick a better one if I tried. I just pray that Lilly, my family and I can endure this bitter cup and not shrink. Fore warning, it made me cry.

That We Might “Not . . . Shrink” (D&C 19:18) (55:52) | Church Educational System Devotionals
March 3, 2013: Elder David A. Bednar speaks on steadfastness and submission to the Lord's will.

How has Lilly affected you life?  Please leave a comment or story about her.

Tuesday, March 4, 2014

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.