Neupogen

Lilly's numbers finally started to come up on their own! Yay!! But, her oncologist wanted a bigger bump in numbers before we started oral chemo again and before we go on our Wish Trip. So on Wednesday and Thursday we went up to the hospital to get Neupogen shots. Not fun. Neupogen is a medication given to help boost neutrophil counts. Lilly was really worried that they were going to be like the Erwenia chemo shots, which she HATED! But, they weren't too bad. We are so grateful for nurse Aubri! "She is a professional port placer and the best shot giver EVER!" We love her! Lilly had another CBC on Friday morning and we found out her ANC went from 600 to 11,000! ELEVEN THOUSAND!! I was so shocked it was that high!!! But, her doctors were very pleased with her numbers and said her ANC will level out really quick but that she is safe to go on our trip and she will be able to start her oral chemo again soon. Yay! DISNEYWORLD, HERE WE COME!!!

Aquarium with the Mascots

Last night the Mascot Miracle Foundation hosted a fun evening at the Aquarium in Draper. We had a great time and we made some fun memories!

The girls favorite part was finding Ariel and Prince Eric "under the sea." We are so grateful for a "Princess Mascot" because Emery is afraid of any other mascot wearing a big costume. 

Little Miss Em LOVES to DANCE! We can't wait for her to start dance class in September. She can move and groove!!

Lilly had fun dancing with Felix!

We love all of the mascots! They bring so much joy to our family!

A special thanks to Felix and Trina for taking us under your "wing" and letting us be a part of your family! We Love You! Also, thank you to all of those who worked so hard to put this fun night together! We had so much fun and are so grateful to this amazing organization!!!

Diagnosa-Versary

February 12, 2014 Lilly's Journey Begins

Click on the Image above to read about her Diagnosis

It's been one year. One year since we heard those words "Lilly has Leukemia." I didn't know what it was like to have a broken heart until I learned that my child had cancer. I had never been at a lower point in my life. How were we going to get through this? How could I be strong for my Lilly? 

It has definitely been an emotional roller coaster this past year. There have been so many hard times... So many struggles Lilly has had to deal with - surgeries, allergic reactions, transfusions, medications, port issues, fevers, emergencies, exams... The list goes on and on. 

BUT, there have been so many good times too. We have a new "cancer family" that we rely on. I wouldn't wish this on anyone, but we have met amazing families who are going through this cancer journey as well and they have buoyed us up and helped us through hard times. We have made life long friends. We have had the opportunity to do things that we never would have done if Lilly didn't have cancer.

This morning I was talking to Lilly about her cancer journey so far... She remembers in detail the very first week. All the hard times, all the fears, a lot of tears. But then she said, "It was really hard at first, but it's ok now..." She's in a routine. She doesn't mind going to clinic - that's where she sees a lot of her friends!! She is used to getting her port accessed and getting chemo. It's normal to her. So, even though we have more than a year left, it's "ok" now for Lilly. She has grown up so much this past year.

I am grateful to a loving Heavenly Father who has carried us through the hard times. Never have we felt closer to God than during our lowest lows. He is near. He hears and answers prayers. And He comforts us when we need Him. Lilly has developed such a close personal relationship with her Heavenly Father. She knows that He is real and that she can pray to Him anytime, anywhere. I am reminded of the scripture Joshua 1:9 "...Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee withersoever thou goest."

Thank you for your love. Thank you for your prayers. Thank you for your support. Thank you for your gifts, and cards, and phone calls, and hugs, and food, and donations. It all means so much to us. Be Brave For Lilly!

extra prayers

On Thursday 1/22, I noticed that Lilly had a patch of petechiae on her back. that "mom instinct" told me to call clinic and request a CBC. Her platelets were low, but not low enough for a transfusion. But, we were told to stop all oral chemo because Lilly's ANC was zero and it's not supposed to be that low during maintenance. That Saturday, Lilly was admitted for a fever. She tested positive for Rhinovirus. She received a blood transfusion and we were released on Monday. We had clinic that Friday. Her ANC was only 200. We still didn't start oral chemo and we skipped the spinal tap because her doctor's didn't want her sedated with her cough. The following Wednesday we did another CBC... Her ANC was back down to 100... We just did another CBC yesterday... ANC still 100. What the heck!! Why isn't her body producing what it needs?? We go on our Make-A-Wish trip in two weeks and her numbers need to be higher than they are now, or I'm guessing we won't be going! Aaaahhhh! 

I just talked to Aubri, Lilly's nurse in clinic, about the plan... We are STILL holding oral chemo for another week. I asked her if that's ok that we haven't been on chemo for so long during the maintenance phase. She said it's definitely not ideal, but it does happen sometimes. We will do another CBC blood test on Monday to see where her numbers are. We are hoping they will be up. If NOT, they will start Neupogen shots to boost her ANC. They don't normally use Neupogen shots on leukemia patients, unless they are a transplant patient. But we might have to... Dr. Doug is confident we will still be able to go on our Make A Wish trip. Lilly could use some extra prayers to get those numbers up. She has been looking forward to this magical trip we are taking, and she would be heartbroken if we had to delay it. So, please say an extra prayer for Lilly.

On a lighter note.... We are so grateful for the thoughtfulness of others... A Young Women's group came over last week to give Lilly and Emery a Valentine. I don't personally know any of these group of girls, but they brought a smile to my family and I am very grateful for them! They heard of Lilly through a mutual friend and wanted to meet her. They were so cute with Lilly and Emery and my girls felt so special!! I am reminded of the scripture in Mosiah 2:17 "...when ye are in the service of your fellow beings, ye are only in the service of your God." Thank you for serving our family! We Love You!

School of Medicine Lecture

A while back, Dr. Engel asked us if we'd participate in a lecture at the School of Medicine. Every year, Dr. Engel chooses a few families to talk and answer "real life" questions that medical students may have. It gets the students out of the text book and gives them a tiny peek into families lives and how cancer has affected them. It was a neat experience.

Can you tell Lilly LOVES her doctors? She has a love for them like none else. She looks forward to going to clinic each month so she can get her one-on-one time with them. 

The room was full of med students... All looking professional in their white coats. It was kind of intimidating, if you ask me.

It was an open discussion. They asked personal questions, medical questions, questions to the kids, questions to the parents. I thought it was great to hear each families different perspectives. 

One of my favorite questions was to the kids: "What do you want to be when you grow up?" Ricky wants to either play sports like his Dad, or go into architecture. Trey wants to be a Pilot for Life Flight. Lilly wants to be a nail painting doctor. Lilly continued to explain why she wants to be a nail painting doctor... She told them about her best friend Michalla who had leukemia too, and how she would always paint her nails and how Michalla always made her happy. And then she told them that Michalla passed away and she wants to continue to paint nails because that's what Michalla would have done. There were quite a few tears shed from those medical students. Lilly's experience was real to them, and I'm glad she felt comfortable enough to share it.

Near the end of the lecture, Lilly really wanted to talk in the microphone again. She kept whispering to me and asking when was it going to be her turn to talk? Just before Dr. Engel ended the lecture, Lilly raised her hand high and kept waiving it until Dr. Engel gave her a chance to talk. Lilly said, "Um... I have nicknames that I gave my doctors... I call Dr. Engel Mike Wazowski, because he kind of sounds like him! (that got a few chuckles) And I call Dr. Doug Prince Eric because of his hair!" (that got HUGE laughs and a big round of applause!) It was so so funny! It makes me laugh every time I think about it! Way to go Lilly!!!

After the lecture was over, the medical students stood up and clapped for our families. I got so teary eyed and emotional. I had an overwhelming sense of gratitude for our kiddos and the fight they've been fighting. They're strong. They're brave. And they're incredible!!

Having fun after the lecture was over.

I love these kids!