Friday, June 27, 2014

We're STILL here!

So, I posted my last blog post too soon. We are still here!! Just after I posted, Lilly started shivering and she spiked a fever! Boo! That meant we had to stay. Lilly was miserable yesterday so I'm kinda glad we stayed. They gave her antibiotics and Tylenol and kept a close eye on her. 

At times she was freezing and her body was shaking because of her fever... At other times she was so hot that she stripped her clothes off... And then she started with this rash. :( It was an eventful day to say the least. Her oncologists have chalked it up to a virus. The last time she spiked a fever was about 2 in the morning. She's getting a different kind of antibiotic now and then we will (hopefully) be discharged. They'll check the blood cultures and call us in the next few days if anything starts to grow. Lilly spiked a fever with the first round of methotrexate too... (but with no rash) I hope this isn't a trend. Fevers are no fun!

Super Lilly!!! She is MUCH happier today!

Thursday, June 26, 2014

Round 2 of High-Dose Methotrexate

We were admitted on Monday for Lilly's second round of high-dose methotrexate. She tolerated the first round really well, so we had high hopes she would do the same this round.

The first thing Lilly did when we got up to her room is write "Drinknp" on her white board, just like Irish did the last time we were inpatient. That's your main goal - to drink and pee EVERY two hours 24/7. It gets really old after about two days... This time we were on the 3rd floor in "K" pod. We LOVE it down there. Very small pod with somewhat "healthy" ICS patients, but very laid back and fun!!

Lilly was nervous to get her port accessed... It's hard on her to go a couple of weeks without doing it. She did great though. The first thing Lilly did after she got her port accessed, was she jumped out of bed and grabbed her music box. She got this special music box at Michalla's funeral from Michalla's mom. It is very special to Lilly and it's something she will treasure always. Lilly started playing her music box and calmed right down. She said, "When I play my music box I can hear Michalla." What a tender moment! Lilly was a little worried to come to the hospital without Michalla being here, but I told her Michalla will be with her when she needs it. I know she will. 

That giant dark bag is Lilly's high dose chemo. Isn't it huge? Lilly made Jessie, her IV pole, a new face because we forgot his old face at home. We like to stay as busy as possible at the hospital. It makes the time pass. 

With the extra yarn from Jessie's "hair", Lilly decided to make spaghetti. She asked Irish if he wanted to try some...? He literally put it in his mouth instead of pretending. All of it. Lilly couldn't believe it. The nurses are so great here to help the kiddos have fun. Irish is a goofy guy!!

That night Lilly got really sick. Her nurse gave her chemo pill to her earlier than we normally do at home and didn't give zofran beforehand. I wait until just before bed to give it to her so she sleeps through the nausea. We all know now that is a good plan.... Every other night we waited until just before bed, and it worked out much nicer for everyone. :)

We were so excited to have Sara as our nurse on Tuesday! She is one of Lilly's very favorites! Lilly had fun painting everyone's nails.

We met a new friend Hayley. She made a "Lilly's Nail Salon" sign for Lilly. She's an incredible artist! 

Lilly and Hayley hung out a lot in the halls. We're grateful that Hayley spent so much time with Lilly. It made our hospital stay much better. It's always nice to have friends! :)

Lilly got an elephant from Hilary the Child Life Specialist. The circus donated them. Apparently, Primary Children's Hospital is doing a study on the elephants blood because elephants don't get cancer! So interesting!!

Yesterday was Hayley's birthday. She turned 17. We had a party in the hall all day for her. Lilly's friend Braelyn came up to visit us after she finished in clinic. That was so nice of them to think of us. We have great friends!

Another thing Lilly and Zoe learned is how to squirt Irish with a saline syringe!! He is such a good sport!

Otis even came to the party!! ;)

Lilly opened up her nail shop again when all of Hayley's friends came to hang out. Lilly was in heaven!! She loves hanging out with the Big Kids! 

Lilly got a fever in the middle of the night. :( But we think that's how her body reacts to the methotrexate. With her first round we had to go back to the ER after we were discharged because of a fever. At least this time we were still in the hospital! We were up a lot in the night. Not only were we getting up every two hours to drink and pee, but Lilly had to get blood cultures drawn and antibiotics through her port because of her fever. We are extra tired this morning. But, we just got the ok to go home!! Her ANC is high enough and her fever hasn't spiked back up again. Yay!! We're excited!! Just waiting for our discharge papers and then we're outta here!

Monday, June 23, 2014

Princess 5k Run & A Great Weekend

I don't know how to describe our day... Smawesome!! Incredible!! Unbelievable!! Amazing!! When Lilly was chosen to be the Princess this year for Millie's Princess Run, I knew it was going to be great, but it exceeded all of our expectations! It was FANTASTIC! None of this would be possible without Brady and Amanda Flamm - Millie's parents. They are amazing people and we've grown to love them so much. There were so many people there to support Princess Lilly and the Prince JT! The news reported that more than 1,000 people were there. Thank you thank you to all who came out. It is definitely a run we will do every year to support these amazing kiddos fighting cancer. 

These are just a few photos from my camera, but you can find more on the 5k Run/Walk tab. Princesses galore! Comic Con! Therapy Dogs! Face Painting! It truly made Lilly feel like a Real Princess!

These two girlies were tuckered out on the way home! It is a day we will never forget!!

Lilly's numbers were so high that we decided to end our weekend by going to church. This is the first time Lilly's been back to church since she was diagnosed. We only stayed for sacrament, but it was much needed. It was a great way to end a great weekend. We are truly blessed!

Today we are back in the hospital. Lilly has another round of high dose chemotherapy. She gets a 23.5 hour drip and then we are here until it clears her system.

Drink and pee. Drink and pee. That's what we get to do for the next few days. Sounds exciting, right?

Thursday, June 19, 2014

Lilly's Goodbye to Michalla

From Lilly's first time meeting Michalla in the halls at Primary Children's Hospital to the very last, Michalla was always able to make Lilly smile.  The first week that Lilly met Michalla was the first week that Lilly was diagnosed and the most difficult, but it was Michalla that made that week a little easier.  Lilly had just found out that she was going to lose her hair and she was devastated.  After meeting with Michalla, she told Lilly it was ok to be bald and that when else can they be called Baldilocks which made things a little easier?

From that first meeting their bond was eternal and they were virtually inseparable.  Lilly always looked forward to going to clinic because it meant that she could visit with Michalla, even those days that seemed too hard Lilly demanded we go visit Michalla.  When they weren't together Lilly talked about her special cancer friend to others and how Michalla would paint her nails.  They would even Facetime each other nearly every day just to see how the day was going. 

Lilly wanted to be just like Michalla, so she started painting others nails and meeting new friends like Italia in the halls of the ICS unit.

Thank you Michalla for making the start of this rough journey a little less daunting and more filled with joy and gratitude.  You will forever be missed but never forgotten.

Love your Forever Friend
Lilly Jayde Alldredge

Wednesday, June 18, 2014

Consider The Lilies

Upon hearing the sad news about Michalla, Lilly wanted to plant orange lilies at Michalla's grave site, so that Michalla will always have Lilly by her side.  It amazes me how their friendship developed in such a short period of time.  From the beginning Michalla was able to help Lilly grow in strength and understanding to face this difficult journey.  Being that Michalla faced this journey before and again for the second and final time on her way home to her Heavenly Father.

In thinking about what Lilly wanted to do for Michalla, it reminded me of the song "Consider the Lilies".  How beautifully it describes the difficult journey the two of them have taken and how Christ has carried their pains from the very beginning as long as they are willing to trust him.

Oh how I hope that we can find some way to aid in Lilly's desire to be there for Michalla in spirit and help in the healing of a lost friend and hero.  There will forever remain a tender place in our hearts for Michalla.

Here's a beautiful tribute to her in this video that she was unable to complete but, undoubtedly will become a treasured memory of her, her strength, and her faith.

We love you oh, so much!!!

For info about Michalla's Funeral click here!

Sunday, June 8, 2014

Say Hello to Jessie the Pole

For those that don't know, Lilly named her pole after her cousin Jessie.

Like she has named many of her things after friends and family. There's: Nurse Sarah Bear, Nurse Angela the Bunny, the Seahorse named Valerina, Bob the Monster, the Lifeflight Bear Gordon 3rd (G3) and maybe a few others I've missed. But whenever Jessie comes into town Lilly and him are inseparable.

It only seemed fitting to her that he be the one she's attached to.  She always loves pushing Jessie Pole around.  Yesterday we were given permission to go to the third floor just to hang out and have fun. We went over to the piano where Lilly was planning on playing. But, someone was already playing so, Lilly and I and Jessie chose the next best thing... Dance to the music.

Later that night Lilly's favorite tech Holly gave her the idea of putting a face on Jessie. We love how he turned out.  What do you think?

We sure love him.

Saturday, June 7, 2014

Days at PCMC

Lilly has been accepting the high dose of methotrexate really well.  The main reason for her being admitted is the possible side affects of the chemo.  They are always neverous about how each child reacts to the various types of chemo given and Lilly has been the exception on so many cases.  Dr. Doug Fair calls her a delicate flower.  This is a treatment where she is more likely to have complications.   Some of the typical side affects may include: Mouth sores, kidney and liver problems and of course in uncommon case "even death". It's always nerve racking to read the risks and side affects of the meds they give her. That being said she has done exceedingly well, with no visible or apparent side affects. It truely has been a BLESSING, like the word of the day yesterday indicated.

We have, taken Irish's advice advice to Lilly and made it our word of the day.  Yesterday he came in with the word DRINKNP to help remind Lilly that she needs to DRINK-AND-PEE to help get the high dose of methotrexate out of her body quicker. 

Last night we were also able to go out of our room to make new friends with another little girl, Italia, Lilly's age, that just found out she has ALL. Lilly was so excited to help her feel better, just like Michalla did for Lilly when she was first diagnosed.  We still continually pray for Michalla and the day when Lilly can go visit her again.

Today, on KSL they are doing a telethon for Primary Childrens Medical Center.  A few months ago Lilly was interviewed by KSL and was a told she would be on the telethon.  So, if you'd like see her tune in at 11-2:30 and 6-9 pm. We will also try to post a link if we can. 

Friday, June 6, 2014

She finally made counts!

We've finally started the next phase in treatment - Interm Maintenance. We were delayed three different times because Lilly's counts weren't high enough. The main two numbers they look at is her Platelets have to be above 75 and her ANC has to be above 750. 

We got to the hospital this morning @ 8:00. She was scheduled to have her spinal tap in the OR because the RTU (where she usually gets her spinal taps) was booked full. This made Lilly upset because she likes the fact that I can go back with her when she falls asleep in the RTU. In the operating room, we have to say our goodbyes and that makes Lilly really nervous. We checked in @ Same Day Surgery and then went up to Hematology/Oncology Clinic to get her port accessed and see her doctors.  Lilly was nervous to get her port accessed because it had been a while since she's had it done. But she's brave and did great! Just before we were getting ready to head down to the OR, Lilly's nurse Jessica came and gave us great news... The RTU had a cancellation and we could go down right now for her spinal tap. It was like CHRISTMAS MORNING for Lilly!!! She was so happy that she was pumping her fists, jumping up and down, and screaming with excitement!! It's the little things that matter, right?

Lilly likes to watch "Frozen" while she leans on my shoulder and falls asleep for her spinal tap. Today she started the "Let It Go" song in the middle instead of the beginning. Normally she falls asleep really fast as she's singing away to the music. But, today was different. She got to the part where Elsa starts building her castle and singing "My power flurries through the air into the ground. My soul is spiraling in frozen fractals all around..." She was fighting the sleepy medication. She was trying so hard to lift her arms up and build her castle, but her arms had a hard time moving. It was really different to watch her struggle through it when normally she falls asleep really easily. Also, she woke up super fast too! Normally we have to wait for about 30 minutes for them to do the procedure and wake up enough to go back to recovery with her... Today, we didn't even wait 10 minutes! She was asleep, they did the back poke, and they stopped the sleepy medicine and her eyes popped open! Super fast! Wonder why today was so different? 

We are now up to her room on the 4th floor. Waiting to start her high dose methotrexate. She has to be really hydrated before they start the chemo medicine. Lilly has to pee every two hours even through the night so they can test the levels in her pee. We plan on being admitted for 3-5 days, or until the chemotherapy is undetectable in her pee. I'm tired already just thinking about it. But, we are grateful we can finally start this new phase and continue on with Lilly's treatment. 

Lilly had fun making a monkey craft that our neighbors, the Sprays, gave to her. We love when Lilly stays busy. It makes long hospital stays more bearable!

Lilly getting Vincristine (one of her chemos) and then starting the methotrexate. 

Lilly has two and a half nurses today: Irish and Brittany (who is pregnant:)

Lilly painted Irish's fingernails!! She thinks he's a pretty silly nurse! He makes her laugh!

Tuesday, June 3, 2014

Be Brave 4 Lilly T-Shirts

Below are two methods of ordering your shirts:
On the left are for orders that need to be shipped to your location
On the right are for pickup orders

For Mobile Device Users
The top three pictures are for orders to be shipped to your location
The form below are for pickup orders 

We plan on having two pickup days before the race:
Saturday June 14th 10:00am-2:00pm
Friday June 20th 4:00pm-6:00pm
Out in front of Lilly's house
Please contact us via FB, TXT, or Email
If you need the location

If you are picking up please bring cash or check.  If you can not pick up on those days you may contact Claire Alldredge (801-916-4397) or provide special instructions in the dialog box below and we will get them to you.

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