Strider at PCMC

This morning we met the Strider team, Ryan (starter and owner), Kent, Kyla at Primary Children's Medical Center. It is no secret that we LOVE Strider. It was so much fun morning to get to show them around the hospital. They donated 2 bikes to the Hematology/Oncology clinic for the other kids to enjoy riding during those long days at clinic. As a mother of a cancer baby you want your children to enjoy everything and to feel as close to a normal kid as possible. We are so thankful for our friendships with the Strider team. They also handed us a stack full of flyer's where you'll see on the front little 2-year old Presley with a head full of curls, ready to race! We hope that we can help Strider get bikes in hospitals for kids just like Presley. I don't think Ryan knew the impact he would make on the world when he started his company but it has definitely made a difference in our little girls life.

Look at that shinny new bike! This is the first time for Presley on her Strider at 22 months old

When Presley was about 21 months old we got her a pink Strider. She was tiny but loved to walk around pushing that pink bike.We got the bike for her in the late fall and let her just play with it inside until the spring. Daddy has a way of making bike learning fun!  Crew was very little and I loved going for walks everyday. Presley is high energy and asking her to stay in the stroller for an hour walk is almost impossible. I thought of the perfect solution. If I can take her bike with me on the stroller, then she can get out and get some exercise and then when she's tired I can just put the bike on the stroller and buckle her in. I asked Paul to make some attachment, but that was not needed. I just put the handlebars over the stroller handle bars as if it was meant to do it. Good thing the bike only weights 7 lbs! It did not take Presley long to learn how to fully balance on her bike. It was Easter Weekend in the Spring after Crew was born that we went for a walk and look out....her feet were up and she was balancing and riding her bike down the hills.

Balancing down the hills on the walk path 28 months old!

Everyone always stopped to look and always wanted to see more. A 2 year old just out of diapers balancing on a bike. What a fun sight to see. That summer we took her to the skate park, she loved learning how to balance at the skate park. That summer we also flew to Black Hills, South Dakota (close to where Striders headquarters are) to be one of the first to get a pair of skis to attach to her bike. Paul needed to build more hours in the airplane and I jumped on the thought of getting to fly over Mount Rushmore and going to a Strider event. It was then in South Dakota that we meet Ryan, Kent and Kyla. We soon became dealers and sold a few bikes before selling our home in Colorado.

People would tell us they thought $100 is too much for a kids bike. I often say..that was the best $100 I have spent on baby/kid items. When you see her in action you might change your mind. I love that at 2-3.5 years old she is able to master something and feel confident in herself. But my love for Strider got even stronger when after Presley was taking those steroids and was unable to walk that as soon as she could stand while holding on to something she was able to get back on that Strider.

I can't walk..but I'm starting to ride my Strider. Who needs physical therapy?

Some of the cancer kids have had to get physical therapy to help them walk again. I told the doctors we didn't need it because we had our Strider. It was during this time that she was also getting to heavy for me to carry around all the time. So when we went to clinic I would give her the choice to ride her bike or be in the stroller. Not once has she choose the stroller. I have been so thankful for that Strider in her cancer journey. She is known at clinic by the nurses and doctors for riding her bike to clinic and now other kids do the same! I am a proud mommy when I see that bald head riding her bike. Everyone stops to look and ask more about it. But what really makes my day is that they are not just staring at that bald head like she's some weird girl, they think she is darling riding that bike and are always amazed that she just got chemo in her port and had an LP (lumbar puncture). We are so proud of you Presley. You are so strong, such an inspiration to so many people. You are only 3.5 years old and you have made an impact for the better, I know you will continue to fight this battle and soon will be a survivor. 

#4 of 5 -IM

Well today I'm writing from the perspective of Daddy.
I hate LP (lumbar puncture) days. I start stressing out days before. Today's LP was not scheduled until the day before when I noticed on the treatment plan that on day 41 she needed an LP. So I called the clinic and sure enough, they forgot. That leaves us at the last appointment of the day. Normally I wouldn't mind being last but for LP means NO food or water. I kept calling the clinic hoping for a cancellation with no such luck. The mornings are really tricky. We decided to have Paul take Crew out for breakfast so Presley wouldn't know she was missing out. First thing Crew saying when you get him out of his crib is "eggies". This boy can put it down for breakfast. I distracted Presley with makeup and coloring, her ipad, polishing her nails and taking a shower.  She kept telling me "We forgot to eat breakfast!" Its so hard to stall these little ones with no food. I tried to give her apple juice which is approved up until 3 hours before the procedure. She will only drink water, which I love but not on LP days. I had Crews diaper bag packed and I was showered ready for clinic when Presley said "I want daddy to go to clinic today". I didn't know if she would change her mind at the last minute but daddy agreed that he would go today.  Daddy got the EMLA cream on and off they went. She looked so cute in her 4th of July outfit and her nails polished to match. It was so hard to wave goodbye. I was a mess. We have been talking about having daddy take her to clinic but I guess I wasn't ready for it to be today. My anxiety was so high. Paul is so good with the kids and it's not that I don't trust him. The truth is that daddy is probably better because he is so clam and interacts so well with Presley in the hospital setting.
I sent them early to clinic to get her CBC done early. I was secretly hoping that she wouldn't make counts so that I could give her something to eat and then we could just get an earlier appointment next week. In the end, I'm glad she made counts. Her ANC today is 1800.
I called about 10 times and texted all day. I even found a few excuses to be at the hospital. We had to drop off some donations, visit our buddy Reiss and pick up Zofran from the pharmacy. I got Presley checked into the RTU (Rapid Treatment Unit). We spent a few minutes with her while she was waiting for her LP to begin.
I'm sure Doctor Fluchel wants Paul to come every week! I usually have a notebook and a list of questions to ask. Paul only had to ask a few questions that I could remember. When I asked Paul how clinic went she said "Great". That's it? I had to ask so many questions to know how it really went.
It was a long day, and Presley was not too excited about having to get the "back band-aid". She has not had and LP for a while. She got her elevated does of Methotrexate, Vincristine and Zofran in her port. Doc. Fluchel said that she is handling treatment really well.  I was one happy mama to hear that.  It doesn't mean that its any easier or that its a breeze. I know that it always looks easy by the pictures. We just don't take pictures of the crying or the pain because we are too busy comforting her. It doesn't take away the "what ifs", and the reality of her life threatening illness. Presley amazes me at her ability to fight hard, and still continue to smile. She doesn't understand what cancer means. It is such a blessing, she just keeps smiling.
Daddy had fries waiting for Presley to have when she woke up. She didn't want them, What? She was so hungry but she got chemo right before her LP. She had a slushy when she woke up and on the way home it came out. :/ I'm hoping it was just a bad combo of wanting something to eat, just getting chemo and the ride home. We will keep her on her Zofran every 6 hours for the next 24 hours.
So she is scheduled July 8th for her final round of this phase. She will be count dependent. Then we will wait 16 days (not sure why 16, I was not able to ask the doctor :) ) I would guess 10 days to get the methotrexate out of her system and to recover her counts, and then to get us back on Wednesdays. So If she makes counts for the next round she will go in on July 8 and then will start Delayed Intensification (DI) on July 24th. Hoping it goes as planned but I'm always prepared for plan B.
I'm nervous for DI. From the doctors standpoint it is the hardest phase of treatment. From the moms that have done this before, Induction (first 30 days of treatment) is usually harder with DI being the second hardest. This phase has the most chemo with the addition of those nasty steroids again. We know what happen last time she was on steroids. Her numbers were really low and she was got every sickness! With that said Doc Fluchel is hopeful that it will not be too bad. We will be back to house arrest. Just when thing were starting to feel like they were moving back towards a  normal life.
We are so thankful for each of you, for following our story for continuing to give us hope. We will forever be thankful for the blessing we see.
Daddy loved getting to go to clinic today with Presley.
When RTU called to check up on her post procedure the nurse said "She looked so cute today in her festive outfit. We all were looking at how cute she is when she was under." Make my heart smile to know how much these nurses love Presley. We have amazing nurses and doctors.

Great way to distract her from wanting breakfast!

Red, White and Blue.

"We forgot to eat breakfast today!"

Life is better on two wheels.

Waiting for my LP (I look happy, but Im not too excited)

2pm....is anyone going to feed me today? Daddy holding Presley before her LP

Staying busy at clinic with Daddy!

Reiss Buddy

Last weekend we went to Price Utah (about 2 hour drive) to support our little buddy Reiss Timothy for an event put on by a non-profit organization called "Anything for a Friend". If you have been following our blog you'll know him. He is my sister in law Erin, sisters little boy. Reiss and Presley share cousins, Jada. Presley and Reiss are currently in the same phase of treatment and have the same diagnosis, fighting Leukemia.
The event that was put on was just amazing!  Words can not describe the love that was shared and the support shown for Reiss and for his family. Becky Anderson is a cancer survivor herself now giving back to those family's in need. She is passionate about what she does and it is evident in every event she puts on. She picks 4 recipients a year to put on an event and raise funds. She mentioned briefly she has raised over $750,000 for family's that have been devastated by those three words "you have cancer". I cried for the whole event. It was such an emotional night. The children singing, the words exchanged, every ones cancer story. It is all to close and near to my heart.
Presley was excited to see her cousins and celebrate with Reiss. All week she practiced the song she would help sing. "Angels Among us" by Alabama. I love that little voice singing the words to that song. It brings tears to mama's eyes every time.
We enjoyed a wonderful meal by Bella's Mexican restaurant (remember we went to eat there and they treated us to dinner), played games, face painting, bounce house, balloons, snow cones, played in the sand. The kids really enjoyed the little train ride. There was a little program with singing and Becky Anderson giving her presentation followed by a live auction. There was also a silent auction going on. This event raised over 45K for the family and they were given a brand new car to help with travel cost to and from the hospital each week. I walked away knowing that the money raised was huge. The financial burden that cancer brings is huge. Besides the money,  the celebration and the support felt was worth more than all the  money in world, a special night for a special person. This event was more than raising money, it was an opportunity to let the Timothy family know and feel the love expressed to them by friends, family and the community who wants to help join the fight to win against cancer. To have someone who has been down this hard road do such a wonderful celebration is just too much for me to think about. Becky Anderson is an inspiration to so many, you can add me to her list of people who want to be like her and give back to those who battle cancer.We love you Reiss, our little buddy. We did not stay for the balloon release and I kick myself that we didn't. I'm sure that was just the icing on the top.  We had such a great time we'll be sure to attend future events and show our support to those who need it the most. Check out her website.

www.anythingforafriend.com

Reiss, Jada and Presley! 

Riding on the little train

Getting ready to sing the song we have practiced all week.

 I will post the movie of the song when I can get it to work. It is precious!

Our little Princess

Tonight I get to hold a tired, fevering sick girl. In the past I might have been annoyed that I was going to lose sleep having to deal with a sick child. Tonight I rock my little girl until its needed with no thought of sleep or annoyance. I can't help but look at her sweet face and just cry. I am so privileged to be her mother. Her little laugh, her smile, her beautiful eyes, her bald head are just too cute. This little brave and courageous girl has changed my life forever. I am one lucky mom. Words can not describe her little spirit. People everywhere have always fell in love with her right away. She is so kind and sweet. She never forgets anything. Presley is our little princess. She has taught me more in her short 3.5 years that I could have ever imagined. I thank my Heavenly Father everyday for my children. Heavenly Father must have confidence in my ability to raise such choice spirits. I love you little princess. Sleep good and I'm praying that fever goes away.

Something was captured in this picture that I can't explain. I love you princess Presley!

"You don't have to wear a crown to be a princess!"

Presley and I got to go to the kick off event for Miss Utah 2013 tonight. "Show Me Your Shoes Competition."  Miss Davis County, Ellie Tucker is the coordinator of this year's HopeKids Royal Ball.  Her platform for the Miss Utah pageant is the HopeKids Royal Ball-how exciting is that?!  One night of the competition involves the contestants creating their own amazing outfit and Miss Davis County invited some of the HopeKids families to help her!  There were some very talented HopeKids artists who designed Miss Davis County's gown. Ellie wear this dress tonight at the competition. Presley was so excited to get to see the princesses tonight. We went to Gardner Village and watched all other girls in the first night of competitions and cheered on Ellie. It was a parade type setting. Ellie Let Presley wear her crown, that made her day! Presley was smiling all night. What a great way to spend our evening, forgetting about clinic and chemo from this morning. 

We also got to get a picture with Miss Utah 2012, Kara Arnold.

Go Ellie!

Ellie wearing her dress created by HopeKids!

I was so happy to get to see Ellie!

Princess Presley

As Miss Davis County said to Presley..."You don't have to wear a crown to be a princess!"

Miss Utah 2012

Two cute girls!

HopeKids is a program that Presley is apart of:

HopeKids provides ongoing events & activities and a powerful, unique support community for families who have a child with cancer or some other life-threatening medical condition.  We surround these remarkable children and their families with the message that hope can be a powerful medicine.

 

#3 of IM

Today was pretty uneventful at clinic. The usual check in, vital check, port access and then a CBC. We made counts! Presleys ANC was 2000. Paul and I always make a guess. Paul said 2500, I guessed 1000. Daddy won the guess! The nurse ordered chemo and we waited for a little while. We then got 2 different chemos in her port. Her body is tolerating the methotrexate pretty good and her numbers look good so they escalated the dose of methotrexate again. She got 120mg. of methotrexate today. Fingers crossed and prayers that she won't feel too sick and will not get those nasty mouth and bum sores, from the skin break down. The numbers are so important to know and understand as a doctor. They can't give chemo when the numbers are too low or they risk damaging/killing the bone marrow and the results would be needing a bone marrow transplant. Each time chemo is given its important that the body can recover the RBC and WBC and Platelets on their own. 

Another 10 days off! This phase has been nice to only have to go to clinic every 10 days. We have two more rounds of this and then we go to a not so fun phase :/  Thanks for all your love and support! We are so blessed.

Showing off her new headband from "Headbands of Hope"
www.headbandsofhope.com

Showing off her port! We have come a long way!
The nurse told her today, "Thanks for being so good at accessing your port! "

complicated

Why is life so complicated? I feel love by many but so alone at the same time. I live wearing an invisible mask. A mask that I can hide behind. I smile because then people think that you are doing OK. I have hope that Presley will fight Leukemia and one day be given the title of "survivor". I also live with fear that she is the 5-10% or number that doesn't win the fight. I have moments when I forget about cancer and the toll it's taken on our little fragile family. The reality is that my mind and life is so consumed with this crazy cancer that we cannot just walk away from. I have days I just pretend that all this didn't happen. I cry and I sing, I wish laughing came a little easier for me these days. I'm numb to a lot of things, its so much easier to just stay numb and not acknowledge this trial. I have a few angel friends, but I live so far away from my family and friends. I long for those familiar faces who give the kindest hugs and people stopping by with a little pick me up. I don't understand why somethings have happened in the past few weeks. I feel distant at times but need people all at the same time. Why do some people judge? Why am I being judged? My world has been turned upside down. The load I carry is so heavy. I have a hard time sleeping at night. I don't know if life will ever be carefree again. I took that for granted. The thougth of Presley's cancer relapsing haunts me. Presley's cancer journey has stole her innocence and left her fearful, scared and in pain. Cancer not only affects her but Crew suffers in his own ways as well, it's affected us all. He is struggling with seperation anxiety and fears that he will not be with his family. I hated that he was away from us for 2 months. Will he ever understand? His trust cycle was broken. I feel like a turtle, slow and often hiden under a shell. I have always wanted to have more children. Do I dare take any more chances? I pray I will get another child but don't know if that will be in cards. I am not myself. Will life ever be what is was before? My heart is so full at times but so empty other times. My problems are too big for many. I'm now surounded by people who are doing hard things. Can you see why I say "complicated"? COMPLICATED.

Dream Night at Hogle Zoo

Tonight we got to take the kids to the zoo. We have been talking about this all week. We were given tickets from the Child Life Specialist at clinic.
Dream Night is an international event, which started in 1996 at the Netherlands Rotterdam Zoo, for children with disabilities and those dealing with chronic illnesses. Since then, over 250 zoos and attractions have opened up their grounds to children and their families for a private evening of fun.

The night included:

Free admission

Dinner in the American Express Pavilion

Face Painting

Carousel Ride

Activities and Programs

Mascot and Princess Encounters

"World of Flight Bird Show"

Village Inn- Apple Pie

From 6-9pm

The kids had a great time. Dinner was great. Paul was holding back tears. As he looked around all he could see was sick and disabled children. Its just so hard to take at times. But comfort to know that you are not alone. So many brave families out there.  Presley was pretty tired and actually threw up 2 times. :( But she didn't want to miss out on the fun, so she tried so hard to keep up. I think the kids enjoyed the giraffes and the sea lions the best. The other high light was face painting and the carousel ride. We stopped to see the princess too, Crew was not sure about that! Presley ran into Pam, one of the nurses at clinic. Fun to see a familiar face. Thanks so much Hogle Zoo, a fun night for families!

Dinner was so yummy! The best Mac and Cheese!

Ready to see the animals

The new baby elephant. The bigger one is 52 years old!

Presley was so excited to get her face painted.

A family picture, that's rare!

Crew wanted daddy to ride with him!

High light of her night, does she look like she got chemo today? 

Sea Lions swimming upside down, pretty silly.

The "Lego Animals"

Village Inn Apple Pie, hit the spot

Crew was not too happy about this.

Headbands of Hope

We got a special treat in the mail. Three darling headbands. For every headband purchased one is given to a girl with cancer. Thanks Jessica Ekstrom (Founder and CEO) of Headbands of Hope. What a wonderful orginization. Check out the website and keep this in mind when you need a headband. Thanks so much.
www.headbandsofhope.org

2nd Round of IM

For each round (5 rounds) of IM she is count dependent. Meaning her ANC has to be higher than 750 to move forward. Each child tolerates chemo differently. This phase is more tailored/custom for each child. If they tolerate the methotrexate then they elevate the dose each time. For the first two phases of treatment she was only count dependent to start the phase.

CBC Results:
WBC: 6.3 (this was the number that was elevated with leukemic cells)
HGB: 10.9 (hemoglobin-Red Blood)
Hct: 32.4  (hematocrit-Red Blood) When this number is >24 they do a blood transfusion
PLTS: 288 (Platelets) When this number s >50 they will transfuse
ANC: 3.7 or 3700 (Immune fighting)
These numbers are the numbers that we hear about most often but they actually do quite a bit of blood work each week

So with an ANC of 3,700 and her other blood counts looking good, we only had to get two does of chemo today in her port (IV). Vincristine (the one that makes her hair fall out) and Methotrexate. 10 days ago she was given 60 milligrams and tolerated it very well. Today she was given 90 milligrams. So each week if her body can tolerate it they will elevate the amount of methotrexate they give her until her body no longer can tolerate it.

We love when the dogs come to play at clinic

Getting chemo and an Otter Pop.

Sharing with "Princess". Thanks Andrea for the fun experience at Build-a-Bear

Presley and Kristen (our favorite nurse)

Today was pretty easy our only drama was after Kristen accessed her port, I moved my leg and pulled on the tubes, out came the port needle. Yikes. But no big deal she reaccessed and then got that sticker on before I pulled it out again. This would have been traumatic if it were 2 months ago. We got to see one of the service dogs at clinic, and have a Popsicle. Tonight we get to go to "Dream Night" at the zoo!
We have another 10 days off clinic. So Monday June 17th will be our next appointment.
Presley continues to amaze me with her strength. Last week she rode 2 miles on her bike, along side us. The doctor today was explaining that the dose they give to the High Risk kids is 50 times what they give to Standard Care kids. But her point was that High Risk A.L.L kids get even higher dose than what adults get because adults cant tolerate that much methotrexate. I was wanting to know Presley's dose vs. what an adult would get. Young children are so resilient. They don't know they can complain, they are nature fighters. Presley is so strong and so resilient. Her ability to fight what has been given her is amazing. She is an inspiration to many people around her. My heart just smiles when I see that cute bold head, Fred Flinstone style on her bike riding through the hospital halls. Everyone looks, she makes me so proud.