Skating with Santa

Presley was asked to be the "wish kid" to turn on the city light at the Gallivan Center in SLC tonight. She has been taking about this for months. She wanted to go ice skating with santa! Remember Disney on Ice. She tells us she is going to skate like them! I was especaily looking forward to this event to start the holiday season off and to feel that Christmas spirit. I knew and could feel a few days before that the event might not happen for us. Presley was not feeing her normal emergizer bunny self. Friday approched and she was feeling a little better, prob becuase she knew today was the day she got to go staking with santa. We all go dressed up and went to the event. We were interview from the news crew for the first little bit and Presley was not her self. My heart was sad but I put on that happy face. So thankful for the room back stage that we could keep Presley. She was freezing all night. It was a cold night but nothing she hasn't done before without freezing. We then stepped on stage and listened to a beautiful childrens choir sining Christmas music. Santa was great. David osmond Presented Presley with Snow White Chritmas tickets (Rose Wagner Theatre) to come and enjoy the show. Remember her wish is to see Snow White in Disney World. Make-A-Wish is amazing. Presley and Santa then flipped the switch to light the sky with the colors of Chirstmas. My heart was so full from all those in the crowd who came to support us. Thanks for your love and support.  Thanks to Jodi (the event cordiantor), Presley just loves Jodi! She made the night just perfect for us down to every last detail. Presley really wanted to skate. She just was not up to it. Thats hard for her. She sees all the other kids doing it and just can't keep up. Thanks to the Gallian center they gave us tickets to come back and ice skate when its not as busy. She can't wait. We ejoyed cookies and milk and holiday cheer. Even thhought the night ended in the ER with Presley having a fever we tried hard to enjoy our time and feel that magic of Christmas. 

Thanks Make-A-Wish for all you do and continue to do for us and so many other familes facing this same nightmare. 

Live on the News!

Might have been the only smile tonight :(

Santa and Jodi (Make-A-Wish)

David Osmond Presenting Presley with Tickets to see Snow White Chirstmas

Santa and Presley turning the lights on..Ready

Set--Push

Lights are on!

Ta Da!

our cute little raindeer!

Also a huge thanks to Persnikity clothing for the donated christmas outfit for Presley she looked darling under her coat, I promise! Every detail of the outfit was donate. She was just too cold we kept her bundled up. But you will see her in her outfit before this season is over!!!

Emergency Room and her Binkeez Blanket!

Friday we spent the evening in the ER, 7pm until about 11pm. It was pretty quick and I'm so thankful for that. Presley's been sick with something and finally fevered again to the point we needed to take her in. She had not had a bowl movement in over 6 days. Poor girl, her belly was so uncomfortable. She didn't want to eat or drink much. Port access was hard. No EMLA creams means they had to use a cold spray. She screamed and was very upset. These ER visits really set her back emotionally to all that she is forced to do. She then endured the dreaded nose swab test for the flu or virus. These are very painful and scary for her. After that was time for a belly x-ray to role our any bowl blockage.

Sad and sick eyes

Still smiling!

Our set up for the night

Amazed that she is always smiling. Chap lips are always better after you get a bag of fluids!!!

The blood work came back good (Phew, a sign of relief) I was even dancing to "Brave" a good sign that Mommy's nerve's were calmed. Her ANC was 2900. That was also good news, if it had been below 500 we would have been spending the night. The X-ray showed no major blockage. This was another tender mercy. An NG tube placed down her nose to clear the blockage was going to be the ultimate. I wondered if she would ever forgive me for that. That is not a fun procedure for kids or anyone for that matter.

With her new personalized Binkeez Blanket. It is her "Presley" blanket. We now carry "pink and brown" and her new blanket that was donated to her. Its the softest blanket ever! Thanks so much Binkeez!

So with enough white blood cells, no major blockage and positive for a nasty upper respiratory virus they sent us home.
The virus is hitting her hard. She continues to be up and down from the effects of chemo. When shes up, you never know shes a cancer kids. When shes down it scares the heck of me and is not a gentle reminder of whats continuing to be present in our lives.
Thank you for all the love and concern for our little Presley bug! Another hospital visit. Tis the season of sickness. I pray this season we can stay as healthy as possible. Sick Presley causes so much commotion at our house.

Vegas Baby!

Paul and I finally after 4 years spent an evening and night alone! It felt like we won the lottery! That was too long and hoping the next will not be 4 years from now. We headed south to Grandmas house and dropped the kids of and we continued down to Vegas (about 2 hours south of Grandmas).

What happens in Vegas stays in Vegas! I don't think that city ever sleeps. It's been a quite a few years since I had been to Vegas and many years for Paul. The lights, the entertainment, and people watching always make for a good time in Vegas!

 We stayed in  Marriott's Grand Chalet off the boulevard on the strip!                          

Our entertain for the night was amazing. I'm still on a little bit of a high from it. We saw Micheal Buble. He is a great entertainer. I have always enjoyed his music and to see him live was icing on the cake.

We stopped at the M&M store. These are Crews favorite. We got yellow and blue for Crew, and pink and orange for Presley! 

For breakfast we went to Bouchon at the Venetian. The food was 5 stars. I had Chicken and Waffles. I know.. gross for breakfast. It was amazing. They make over 200 of these a day on the weekends. They only serve it on the weekends or they say it would be the only item they make and serve. I'm still dreaming of it! Paul had maple banana pancakes. Its rare when I order something a little out of the norm. So glad I did!

The kids had a great time with Grandma and Grandpa. I'm pretty sure they were very excited for us to walk in those doors. Busy kids...with high demands. We started our Thanksgiving week off with a much needed getaway! We both needed to just get away for the evening and enjoy each other without the demands of children and cancer.

last dose of front line chemo

Today was a big day, well it was in our world. Presley received her last dose of front line chemo. Remember way back in March the doctors told us that the first 6-9 months would be the hardest! WE ARE DONE with the 6-9 months hard chemo treatments. What a relief. I feel like 100lbs has been lifted off my shoulders. We made it. We are no where near being done with treatments but getting closer. The road of "Maintenance" is not an easy road but better in many ways. Presley will still be immune compromised/suppressed and she will take oral chemo everyday, steroids every month (UGH-UGH), Methotrexate for an LP (Back Poke). Good bye to IV methotrexate, red devil, ara-c, PEG...these are just a few. I spent a lot of time lately thinking back on the past 6-9 months. We have come so far. I remember the days while we were living in the Ronald McDonald house with a very sick baby. So thankful she is doing good and continuing to show us just how brave she is. I want to be more like her! Everyone comments on how good she looks! I can see her coloring come back a little and I smile every time I look at her hair growing in. For the most part she is happy and healthy. We are still working on insomnia and sleeping issues and some of her independence has been lost and side effects from the treatment. We are thankful for modern medicine and what it has done for our little solider.
Today her ANC was 3200. Its has been 3 months since we have seen her ANC that high. I was getting a little worried. I wanted to shout when the doc told me her ANC was 3200. FINALLY starting to recover from those harsh chemos in Delayed Intensification. With an ANC of 3200 they increased her dose of methotraxte (IV chemo).

She loved playing with the stamps today. 

Hair makes me smile!

Mommy and her Brave girl!

Waiting for chemo!

Presley getting her last dose of front line chemo (IV methotrexate)

Today as I sat and held Presley waiting for chemo back in the "infusion" area. I witnessed yet another family whose world was turned upside down. I don't even have to listen to the conversation to know what is going on. It's all to familiar to me.  Some mothers look at you like "HELP", while others shut the curtain for privacy as they take all this in. Oh it is so much to learn and do and its hard. Usually I start up a conversation and try to see if I can help in anyway but today I didn't, I let curtain hide us today. I tried to just reflect back to that first week. The emotions, fear, hurt and anxiety. It's just as hard as a mother or father to be brave or to hold it in while you calm a fearful child. It is not just Presley going through this cancer mess, it's each one of us. We have been there for every step being strong for her. I can't get that family off my mind and the smile on the infants face. My love for all these little fighters is so strong. I cant explain how it feels but I will never stop fighting for our little cancer cuties. Sometimes I try to act like I don't know anything as to hide or try to believe this is really just a nightmare and it's going to all be gone in the morning. I held Presley tight today while waiting for chemo. I tell her all the time that she is brave and my hero. She just listens and really doesn't know what to say back. Today I just held her in hopes that she would feel how brave I think she is.

I love to crochet and the past 10 days I have been so busy. I made 5 Rapunzel hats to give away today. Nurse Becky got a hot pink one (Presley is coming, so they can be twiners. This was our fix, Presley still tells people that her hair is going to grow in pink! This girl loves pink! It feels good to your soul to give of yourself. The smile on that little cancer cutie that Presley gave a hat to at random was so excited. Her mother was in tears. It's not everyday that you can do something and know you really made a difference but today was one of those days. With a feeding tube, massive scare on her head and the "Moon Face' (chubby steroid look), the hat made it all feel better. I know brave little kids! I feel proud to know them! I am especially thankful for our sweet Presley. I'm proud to be her Mom. Not ashamed one bit, she wears that bald head so proud and stands tall. She never stops to think poor me, she is my hero.

We get 19 days off. 19 days, like your counting down for a vacation. I hope and pray the next 19 days feels like a year. What a gift 19 days of no clinic, chemo etc.

Presley and Becky. We made pink hair for Becky! We love you Becky!

They all realized in the hall they all had a new hat today! We met Zoe and gave her a hat today. Sill Doc Fluchel is wearing the hat we made for his little girl. We also gave Nurse Kristen 2 for her girls. 

Disney On Ice

We went to Disney On Ice on friday night. The kids had a blast. They loved every minute of it. Thanks to Clay and Jen Hansen for the tickets. Not only did Clay and Jen take our family pictures they also send to us Disney On Ice. Clay and Jen are amazing people. The world needs more people like these two. They are doers, they don't tell you "let me know what we can do" (like I often do) they just do it. We really can't thank them enough. Did I mention they were front row seats? That made the experience even better, up close and personal. We were a little late and I never looked at the tickets to see where we were sitting. We walked to portal U and the usher said "the first row", it was a long walk down but worth it! It felt like first class. My camera doesn't do the best in low lights, pictures don't do this show justice. The kids were excited to hear familiar songs and watch the characters ice skate.

During intermission Clay, Jen, Millie and Broke came to say hello. It was so great to see them. Presley was able to finally meet the girls.

Crew loved Stitch (and called him a rabbit). I guess we need to add that to our to do list to watch Lelo and Stitch. He was so cute when all the characters would come close (remember we were on the front row) Crew would just wave and say Hi, Mickey, Minnie and rabbit! He was also in heaven when daddy brought a big bucket of popcorn. I don't have a picture...I was helping hold the bucket, He's in the "I want to do this by myself" stage (yikes).

Presley loved Lion King, Minnie, Mickey, Donald, Daisy, and Tinker Bell (maybe next years costume). She wore her Rapunzel dress and everyone thought she looked cute.  

We are so thankful for tonight, with her crocheted hat on, no one knew our crazy life story. No one asked questions or stared us down. (I don't mind when people ask just nice not to have to tonight!) We were able to feel like a normal family tonight. 

Thanks again Hansen's for your generosity and even giving us better tickets than your family. We love you Hansen's. We made a special treat for Millie and Brooke. Glad we could share some of our talents with them!

#4 of 5 for IM2

Today was #4 of 5 for treatments! We are almost done with this phase of treatment. I don't mind this phase and really want to hold on to it. I'm not ready for the next phase of this rodeo.  I know I should be, and I should be jumping for joy to start long term maintenance (LTM). She has about 2.5 weeks left and then she will be taking oral chemo EVERYDAY. I will post more about LTM soon.

Today's clinic started out rough and ended hard. Presley woke up early today, when I saw her open the bathroom door my heart just sunk. She needed another hour of sleep. Presley is a light sleeper and trying to get up and take a shower without her hearing me in our tiny apartment is almost impossible. She wanted breakfast and of course today she was NPO (no food after midnight and no water 3 hours before). She knows no breakfast means "back band aid" and she is never too happy about this. She got dressed and cried to get her EMLA cream on. We got to the hospital and she didn't even want to take her Strider bike with her. We were a little late to clinic so she was not able to sit down and make a craft in the waiting room. They sent her right to get weighed, blood pressure and vitals. The blood pressure cuff wasn't working so we had to try 3 times. Back in the room waiting for the nurse she just sat and watched her ipad. Then it was time for port access. She cried hard today. Her cry was saying...I'm over this. Is this ever going to end? Do I have to do this forever? I wanted to just hold her and tell her that one day this would not be apart of your life. Having to be strong and brave so often is tiring and wears you down. I want her to know too that I feel that same way...I'm over it. During port access she just cried and said "I want pink and brown (her favorite blanket since birth or aka kiki). Of course today in the hustle to get out of the door by 7:30 to get to clinic by 8, I forgot to grab pink and brown. I never do this, today was such an off day. The doctor came in to tell us that her ANC was 600. I thought they would send us home because her ANC needed to be 750. They decided to go ahead and give her chemo and do and LP (back poke) but to just not elevate her dose of chemo. I think this is the 3rd time she has just stayed with the 150 mg. of methotrexate. The CBC is telling us that her body is struggling to keep her numbers up and so not elevating the dose will help so she does not bottom out or let her numbers get too low. Her platelets are better and her red blood cells are good but her ANC has really never recovered since after DI started. I have been worried about this but the doctors again told me not to worry. Her body has been hit hard in the last 4 months. It will take a while to recover.

Smiling after my port access but not really happy today!

Waiting for my Lumbar Puncture where they take a little spinal fluid out and replace it with chemo.  

We then made the walk downstairs to the Rapid Treatment Unit. We were greeted by her nurses that just love her. She perked up a bit and figured I'm here so just smile and hope its done soon. The anesthesiologist came in and did his usual asking of questions. I just told him "just do what they always do, she does well with that". I then walked her back, trying to keep her calm, the procedure room is scary. She was extra whinny and clingy today. There are 2 doctors, a nurse and the anesthesiologist  standing around the table that I lay her down on. She didn't want to let go today. As the anesthesiologist  started to put the medication into her port I noticed new drugs (3 new ones) I asked him, what are you giving her, he didn't answer. So I turned to the nurse and asked her she just shrugged her shoulders. Looking back I should have said STOP! As soon as she was asleep I walked away. This is very hard and emotional to leave your baby in the arms of medical staff knowing complications could arise. It wasn't the normal Doc Fluchel or Doc Green and Wendy or Becky. I felt comfortable but not at ease like I do when her doctor and Wendy are with her. She slept for a long time and Wendy (She was with her when she was waking up..thank heavens) had a hard time getting her up. She finally woke up a little and I had sausage and french toast for her waiting. last time she was upset that she missed breakfast when we went straight to lunch foods. I thought she would like this. She reached out to grab the sausage and I knew something was different. I looked at Wendy and her calmness helped me to relax. She wasn't too worried but I was. She had a hard time coming out of anesthesia today. She has done this more than 20 times and I have never seen her do this. Her eyes were not normal and she was very off balance. It was then I asked what did he give her....Dex (WHAT?) Propofol (okay that's normal), Fentanyl (what? that's a heavy pain med?? WHY?) Some doctors do it a little differently but I was upset because I thought I had made it clear that I wanted what she always got..surely that was in her charts right? Dex (steroids, really?) Wendy was great...she reassured me that Presley was OK, just too heavy of a sedation for Presley. Some kids like this cocktail. Mama bear will be roaring loud next time around.

This is what over sedated looks like. Poor girl was so groggy.

We made it back to clinic to get chemo and she was wanting to play and be her happy self but she did not feel well. She puked and was very groggy. Reiss buddy was at clinic and she tried to play but just didn't have the balance or coordination as she was still sedated. She got her chemo and zofran and we headed home. She did fine the rest of the night but I was so upset and worried. Being her biggest advocate how did I let that happen? Don't worry it won't happen again! The anesthesiologist  didn't do anything wrong per say just gave her more than her body can handle. We packed up and headed to Grandma house. Life is always better at Grandmas. We were both so tried..I feel asleep so fast. It was a hard day for both of us. Emotional, stressful and just a feeling of being really wore out from all the demands and schedules that treatment keeps us on.  The positive side to starting LTM is that we will only have to go to clinic once a month. Clinic makes for a long day.

Kenny, Reiss, Mommy and Presley. The kids are so thrilled right?

Visiting Grandpa at the University Hospital. We both had to be brave today! It was fun to just walk over the bridge to see Grandpa. Presley really perks up when others she knows, are doing hospital type things!

hair makes me smile

The chemotherapy that Presley is currently taking does not affect her hair as strongly as some the others. This means hair growth!!! For the most part this makes me smile. But I'm a little afraid, doing girls hair is drama and I think I forgot how to do it. I find her little rubber bands and I always think...It's so nice I don't have to style her hair. I have grown to love that bald head so much. It was such a hard day to shave her head, much harder than I thought. 3 doses of vincristine and her hair changed texture, began to matte really bad in the back, and was falling out in handfuls. I couldn't keep it managed and it was a mess and so sickly looking. We shaved it. During the summer months this year her hair was growing as her chemotherapy was not affecting the hair loss. The doctors had told us that her hair would fall out again during Delayed Intensification so during the summer we just shaved it every few weeks. It had that "chemo burn" (that is what we call it), and it was not healthy. Then DI happened and she lost her hair all over again. During that round she lost every last eyebrow and only a few eyelashes were hanging on. One day I woke up and it was all gone. She was so pale, and no hair on her face, to me that was a harsh reminder that she was sick. It took about a month or two for new growth to happen. I swear it was over night and she had her cute lashes and eyebrows back! I just stare and smile and tell her...you are just the cutest thing ever! With a full set of lashes, eyebrows and new hair growth I find myself again just looking at her and smiling. I know that I will miss that bald, no drama haircut but I can't wait to watch all that hair come in. I think we have finally convinced her that it's not going to grow in pink. It's dark and I pray those curls come back! I can see her funky cowlick in her hairline, I just touch it and stare at it, it makes me smile. I miss and remember those last few days when her hair was falling out. I mentally wanted to remember the feeling of stroking every last curl.

 Her are a few pictures of her being silly. I made this "tutu" for her because she was turning two! I spent hours ruffling yards and yards of fabric. It was worth every minute, she loves dancing in this tutu! When she's dancing, she's got this skirt on!

The dimple, The funky cowlick, the beautiful eyelashes, and the stork bite/angel kiss! These 4 things are Presley's trademarks! They make her the SUPER Girl that she is! I can't describe how I feel about these beauty marks on her. The dimple is easy, the cowlick I use to hate...I love seeing it come back in because I know that is her marking. Like a hand print that is different, her cowlick is unique to her. The eyelashes, oh I have missed those. The stork bite/angle kiss on her forehead is such a gift. When her blood levels are low you can't see the angel kiss. Today that kiss is glowing and its a sign to me that she's doing good and that her blood levels are good. When she was little people were always worried about the angle kisses on her face. We were told it was a blemish. I'm so glad that angel kissed her face and left that mark on our sweet girl. 

I love you Presley more than words can describe. You are a SUPER girl. Don't ever forget that Presley. You are strong and brave and every inch of you is perfect. I love you from the top of you bald head way down to the bottom of those cute toes that are always polished!