Liberty's Story

180 Degree Summer.....

2011-10-09T14:55:00.000-07:00

And by 180 degrees I don't mean the weather! This summer was so different from the last, it felt like we had done a 180. Liberty finally got to start swim team. We feel so blessed that she felt well enough to get up each day and go to swim practice, and that she had the energy participate in the swim meets! Some of her best friends were on the team with us and she had a blast. She was able to participate in the team 1 mile swim challenge! She completed a full mile swim!!! She was also awarded the most improved female swimmer in her age group. She's got the trophy to prove it. We are so proud of her, she continues to amaze us!

Back Blogging Mania

2011-10-09T14:26:00.000-07:00

Well we got a little bit behind. To say the very least. Life has gone on though without the blog. Third grade ended in a great way. Liberty did very well and loved her teacher, Mrs. Adams. They ended with field day, and she had so much fun with her friends. This time around we were looking forward to summer! The harsh treatments are behind us.

March 30th, 2002

2011-04-11T15:39:00.000-07:00

Our first born has just turned 9! We called her our dinner baby because she was born around 6:00 pm. This little girl of ours is growing up so fast. She is so mature and has such a great personality we are so pleased. For her birthday we celebrated a lot! It started with her choice of homemade waffles for breakfast, and homemade oreo's for her class. She also opened a present to start the day because she just couldn't wait. Then we had her favorite pesto pasta for dinner and cake and presents. Her little party was with her best friend on Saturday with GiGi's cupcakes and a mani-pedi. Then we went to dinner with family at the Elephant Bar. Whew. It was fun.

Here are 9 things about our Liberty:

She is our little bookworm! She loves to read. She is currently finishing up the Harry Potter series even though she has already seen all movies!
Liberty loves to draw. Art is her favorite class in school.
She is very kind to everyone. Especially her little sister.
Liberty is conscientious and is always making good choices.
She is not afraid to try new things. She's going to do swim team this summer for the first time.
Liberty really enjoys playing the piano, practice and all.
She has a wonderful imagination.
Liberty likes to take her time and do her best. She cannot be rushed :)
Last but not least she is beautiful inside and out!

An Anniversary of Sorts....

2011-03-02T12:26:00.000-08:00

Well here it is one year later. Lib was diagnosed in March last year. It was a scary time for us. Thinking about it is overwhelming. She is doing great so far. We've had a few speed bumps on the way but she has made it through a year of her treatment. This Friday she's goes in for her 3 month spinal tap chemotherapy. The timing is good, because the kids are out of school this Friday so she wont miss anything at school. It's a long day at the clinic, in at 9 am and then out around 4. It's a reminder of what it used to be like 3 times a week and now only once a month, whew. Liberty is so positive and accepting of her disease. She was explaining to Ava that they would be able to play together more this week because she doesn't have school on Thursday and Friday. And then she remembered her treatment and said well not really Friday, "Why does it have to be on that day?!" Oh well. I was surprised at what she said, thinking she would say "Why do I have to have Cancer?" But that's not her, she is strong and willing to deal with it. We are so proud of her.

We would like to ask for a few prayers though. One of the speed bumps for Liberty has been the steroids. Her little body is so sensitive to medication that she cannot handle the full dose that she is supposed to take each month. This 3mg dose is where they have had the most success with cure rates, and low relapse rates for Leukemia. Unfortunately she can't take that high dose, so we will have to back off and take a lower dose each month. We're praying that this will be enough for her to be cured and to have no relapse! We have finally had to say that a little dose is better than none! We are trying to stay positive, just think, this time next year she will only have 3 months left!

Thanks for your continued love and prayers.

A Special Wish

2011-01-09T18:11:00.000-08:00

We cannot begin to express how awesome the Make-A-Wish Foundation is. Liberty was nominated by her doctors office and was able to make a really cool wish and have it granted. She decided she would love to swim with Dolphins..... in Hawaii. And they made it possible! Our family was able to go together and enjoy a wonderful family vacation. It was perfect timing and Liberty deserved it after a really hard spring and summer. We did not think about cancer the entire time we were there. It was so nice to leave our stresses behind and watch Liberty and Ava smile. What a blessing for our family.

Being Thankful.

2010-12-08T21:58:00.000-08:00

Our Girls

We are thankful for so many things this year. We are thankful for our little family. We love these two girls with all our hearts. We have had a very challenging few months. It has been hard on all of us, especially Liberty. But she has come through these challenges triumphantly. Cancer is a hard battle to fight. She is not finished, but she is strong and has what it takes to make it to the finish line. We are so grateful for Liberty, for her health, her strength and perseverance. We are so grateful for Ava, what a wonderful sister she is to Liberty. We are extremely grateful for modern medicine and for our Doctors and Nurses, who have studied and continue to study to make it possible for kids like Liberty to beat cancer. We are also grateful for all of the love and support we have received and continue to receive from family, friends, our community and strangers. Your generosity has not gone unnoticed. We love you and thank you from the bottom of our hearts. I hope everyone had a wonderful Thanksgiving!

As The Pages Turn.

2010-11-30T23:10:00.000-08:00

Well, ever since Liberty was little she has loved to sing and perform. She has never had an ounce of stage fright (she gets it from her dad). The third grade had a musical and Liberty was feeling great and was able to be a part of it. It was titled "As the Pages Turn". All about the Library, the books, the computers, the magazines etc. Lib's part was a computer virus, her character's name was Bugsy. And she and her fellow viruses stole the show! She was too cute! She had a little accent for the character and it was so awesome! We were super proud of her! It was so nice to see her be a part of it, to be well enough to be part of it! Bravo Liberty!

Halloween with a twist.

2010-11-28T19:03:00.000-08:00

Our Vampire girl.

The Trick or Treat Troop.

Well since we are almost never with out drama, here is the Halloween story for 2010. The week was going to be great. School party and parade, piano recital in costume and Trick or Treat. We made it to the Trick or Treat part only, but that's the best part anyway right? Unfortunately for Lib she caught some kind of cold or virus and ended up with an extremely high fever. (like 104.3!) She had to miss school on party day to go in to the clinic for IV antibiotics. Not her regular monthly one, but a different one. And much to our chagrin, she had an allergic reaction, you know, the my throat is closing kind that we know all to well. My poor little girl is just so sensitive to medications! Thank goodness she was still accessed and could have IV Benedryl, otherwise she would have had her first experience with an epi-pen. She also had to miss her piano recital. BUT she rested Saturday and was able to go out and Trick or Treat! YAY! She had a blast.

Living Life

2010-10-12T13:14:00.000-07:00

Liberty on her "first day" of school, a week sooner than we originally thought!

Running the "Fun Run" at school! She did great despite her summer full of treatment.

Good Friends! We Love Them!

Liberty's beautiful face with her new eyebrow's, eyelashes and hair!

We have been absent from the blog world for a while trying to get used to our "new normal". We have had more time to just live life. Liberty only has to visit the clinic once a month for blood tests, chemo and a monthly anti-biotic drip. She takes an oral chemo everyday, and a second oral on Fridays. She still has to do a 5 day stint of high dose steroids once a month as well. Every 3 months she has a spinal tap chemo. It sounds like a lot and it is, but it's not as much as before. This is maintenance. We will do this routine until May 2012. But it's doable, and it has allowed her to be back in school full time! She is doing great in school, it's like she never missed a thing. Lib's also taking piano lessons and loving it. I think we can make it. There were times I thought we couldn't, but those feelings are less frequent now. Whew.

Summer Re - Cap.

2010-09-05T16:19:00.001-07:00

A visit to the Cheyenne Mountain Zoo was so much fun, a beautiful zoo and great friends to enjoy it with. There were a lot of hills and a lot of walking, but all of the girls toughed it out and never complained. We rode the sky ride to the top and the girls played on the rock climbing wall and the jungle gym. We all enjoyed the view from the top. The highlights were; the giraffes of course, feeding them crackers, and the Monkey house. We stayed in there for over an hour. The gorillas and the orangutans were super interactive and fun to watch.

We love a good Rockies Game! We were able to get out to one the Friday before the 4th of July. Lib was pretty tired so Grandpa and Daddy took turns piggy backing on the way in and out. The seats were awesome, the stadium food was fatty and greasy just the way we like it. And the fireworks were the BEST! At the end of the night Liberty said, "Man, those fireworks Rocked!".

Of course lots of swimming in our own private pool. ( Thanks Aunt Jen!)

Chris took the girls to the Aquarium and they had a fantastic time the tiger was awake and the fish were lively.

It looks like a lot was left out from the summer so I that helps to fill in the blanks. We did manage to have some fun between treatments, when Liberty was up to it!

Picnic with Friends.

2010-08-23T09:06:00.000-07:00

Liberty had a long, long treatment day two weeks ago. We had to be at the doctors office at 8:30 a.m. we ended at 5:00 p.m. . The appointment started with Spinal Tap Chemo, then on to a Cytoxan chemo drip, with some Zofran (all too familiar for me, this is the type I did). This Chemo takes a long time to administer, you have to get a lot of fluids and it is given slowly. Then she got another type of chemo at the end of the appointment. Three types of Chemo in one day seems like a lot. It was. But we made the best of it. We brought a big bag of fun and invited friends. I ordered some pizza and soda and the girls had a picnic on Liberty's bed in her infusion room. It was the perfect distraction. These 3 sister's Anne, Leah and Sara, have been like little angels for my girls. The have been super supportive from the start, and have made Liberty feel normal and happy. They have helped Ava to be happy too. Their parents have been nothing short of wonderful as well. It is so nice to have great friends, what would we do with out them?!

Liberty got through the long day, but she was in for a long night. The nausea set in and she was throwing up for a good 3 hours. She finally got to sleep for the night, then promptly woke up at 6:45 and started in again. We had a doctors appointment at 9:30 am, so we headed out and she got sick in the car and twice as soon as we walked in. Thank goodness for IV Zofran, which takes away the nausea. But no rest for Liberty, she also got another dose of chemo. Poor thing, she did not look or feel good. We ended up being sent over to the Littleton Hospital Pediatric floor for 6 hours of fluids. These fluids are magic, she felt like a rock star as soon as we were done. She is so strong, I love her so much, she really is doing remarkably well. We are almost to maintenance!

Summer Concert.

2010-08-02T06:43:00.000-07:00

We have been really excited for a couple weeks now to attend a summer concert put on by our good friends Rob and Melissa (Thanks guys!). It was held in their beautiful backyard, and Rob built the stage. It was a benefit for Liberty. Chris got to perform a couple songs with a very talented family from our church, and he also did an impromptu solo. He rocked the house with a Beatles rendition, Lynyrd Skynyrd, Lincoln Park, and John Mayer for the solo. I heard it was great! That's right heard. The girls and I did not get to attend. Liberty went in for a routine CBC exam and she had a fever (dang it!). Poor Lib, we had to stay longer than expected. She needed IV antibiotics and fluids. Thankfully her counts were stable enough that we got to sleep at home. If they had been too low we would have been off the Big Hotel in Aurora: (aka) The Children's Hospital. She did okay for the rest of the weekend with a good temperature, just a lot of fatigue. This week her counts are set to plummet from the last couple of chemo treatments that she's had, so we will be avoiding big groups still, and washing our hands every chance we get! The hard part is almost over, we can almost see the light of "maintenance" at the end of the tunnel.

Treatment with a Friend.

2010-07-28T15:53:00.000-07:00

Matching bandanna's from the prize closet.

Loading the pump.

Checking Vitals.

Good Friends.

Liberty has mentioned to me on several occasions how she wished that there was another child at treatment just like her. She said, of course she would never wish that someone else had cancer. But she just wanted a friend. Every time she has talked about it I have held back tears. We all know how it feels to want someone to relate to. Someone that will understand what we are going through. It's hard. It's not like there are a ton of kids right in our vicinity that are the same age with cancer. And just like she said we don't wish that anyone else had cancer. So I decided the next best thing would be to bring a friend with us. Her best friend. Treatment was short that day and it was a perfect time to bring a friend along. I think Lib felt great being able to say, see this is where I go and get my medicine and the people are nice and it's not scary. They had fun giggling and playing games. Then we went out to lunch and they had so much fun eating and dancing to the reggae music in Rubio's. It was nice for Lib to share a piece of her "normal" for a day with a good friend.

Ice Cream With the Sweetest!

2010-07-28T15:21:00.000-07:00

What more can we say about Mrs. M? She is the very best. We could not have asked for a better person to be Liberty's teacher at the time of her diagnosis. I know I have posted about this before but it really is true. She is so kind and loving, understanding and giving. We have truly been blessed. She called and made plans with us to do Dairy Queen this summer. This was the second time we got to see her and her lovely husband. She has made Liberty feel confident and special. She has also been a wonderful support to me. I've become attached and change will be a little hard for me this year, Liberty will probably deal with it better than me! But we are excited to see Liberty move on to 3rd grade. We will miss Mrs. M dearly, but I know she is just down the hall, she said I (I mean WE) can stop by anytime, and I (WE) will!

Hive's, Anaphylaxis.

2010-07-26T10:47:00.000-07:00

Liberty at Treatment

If you'll remember I spoke about the drug that we were going to add extra treatments of to Liberty's Road Map. It's called PEG. Most children have an allergic reaction to it at some point. However it is an important drug so the Doctor's continue to use it, with a lot of precaution. Liberty got this drug the first time in the hospital, intramuscular (big shots, one in each quad, tag teamed by two nurses) not her favorite. The second time was through her port a couple weeks ago. She got about 5cc's and started getting itchy, then a hive on her cheek and chest. We stopped. She got benedryl asap. Then the Doc's discussed. We decided to try at least 5 more cc's and see if she could do it. It worked and she got the rest of the medicine. The next time we tried, the nurse primed her line (filling the tube that goes to her port) and hadn't even started the pump and Liberty shot up lips swelling, throat closing turning tomato red. Imagine a Grey's Anatomy moment; the second pump for the benedryl was not working, we are all trying to keep calm, thanks to the fast hands of our favorite nurses Lib got the benedryl and her Anaphylaxis slowed down and started to subside. No epipen needed. Whew. It was craziness. Now this drug is out. We don't try again, and there is not another drug to use instead. It's a relief and it's also scary. We just hope that the original plan is good enough and kind of ignore the new study. We like the old one better anyway. Right?

Beyond our Grey's Anatomy moment, things have gone well. The summer has been long and short, if you know what I mean.

A Grocery List

2010-07-19T10:18:00.000-07:00

This is a copy of Liberty's grocery list in March when she was on her first round of high dose steroids. She was craving anything and everything salty. I love that she still wanted a salad. This time around she is on an even higher dose except it's 7 days on 7 days off. The grocery requests were: Baked Sour Cream and Cheddar chips, Broccoli Cheese Soup, more Pickles, and apples. She is doing quite well. We had to delay a treatment because her counts were so low, but we are back on track. Our doctor's appointments are always 3 to 5 hours long, I always tell the nurses that the hardest thing for us is that we can't plan. The other day when we should have been there for only 2 hours, we were there for almost 6. The nurses and I joked that it was a good thing that I didn't plan anything! We can't wait for a solid routine. But until then we just keep plugging along, trying to find the humor in all this. Without laughter we could not make it!

The Road Map.

2010-06-27T15:17:00.000-07:00

I thought I should update on the medical aspect of all of this. Liberty has been in a phase of treatment called Interim Maintenance since May 11th. We have liked this phase. (If you can like a phase of cancer treatment?) This has allowed her more time to act like a kid. We only had to go to clinic every 10 days. Now it did cause a little more anxiety before treatments because it was also just enough time for her to feel like she didn't have to go back. But we got through it. Each treatment was an escalating dose of methotrexate based on blood counts. Her blood counts stayed awesome as they always do and she was able to keep escalating. This phase also gave a small break from spinal tap chemo. She only had to have one during this phase and it was a 5 star tap! That is the opposite of a "CRAP" tap. (She's had one or two of those). So other than quite a bit of fatigue she has made it through.

The next phase is Standard Delayed Intensification from the beginning of July through August. It's going to be hard. The high dose steroids come back, also lots of strong chemo. And her counts will plummet. I.E. lots of down time and isolation. Not only that but we have had to add extra chemo to this phase. Back in the beginning of this roller coaster ride, Liberty's bone marrow tests put her in the Quick Response group. Well a new study just ended and according to the new cut offs Liberty's tests do not make it. So our Doctors and Nurses whom we love, have talked to all the top doc's in Pediatric Oncology and decided to keep her on the fast track according to the old study and just add a few to this phase. A middle road. I'll take it. Going down to the Slow Response group would mean another delayed intensification phase on top of this one and lots more chemo, which isn't always better. I trust our Doctor's and I think the Middle road they have chosen is good. Fingers crossed. Prayers. We still need them.

Running With A Purpose.

2010-06-27T14:54:00.001-07:00

Lindsay, Jen, Me, Jacove, Jordan

"The Sisters"

One Happy Runner, that the race was over!

Well, we did it. All five of us who registered. We trained the best we could and we all made it to the start line and the finish line. We wore orange ribbons on our shirts for Leukemia, orange flowers in our hair and wrote Liberty's name on our arms and legs. I have never run a race benefiting the Leukemia Lymphoma Society, and it was amazing. There were so many people there just like us. Running for someone they knew, someone from their family, their friend, their child. The sidelines were filled with survivors, posters of loved ones and the best cheering section I have ever seen at a race. It was so inspiring. I felt such a kinship with these people I had never met. I thought of Liberty for almost the entire race. When it got tough I knew that it was much tougher for her and will be for the next 2 years and I kept going. I'm so grateful to my sisters, my niece and to my awesome friend and running partner Jacove for their strength and support! I love them and I love my daughter. It was all for you Lib!

Canvas & Cocktails.

2010-06-26T09:46:00.000-07:00

Another awesome fundraiser for Liberty's Fund. Just look at all the generous people willing to give their time and artistic abilities. I know I've said it before, but I am truly amazed by people and their willingness to give. My faith in mankind has been restored and continues to be, over and over. This night was so much fun! One of Liberty's most favorite things to do is to create. She loves art. She had so much fun painting that night, and so did the rest of us! We really enjoyed having our family there Grandma & Grandpa, Jen & Brett, Jordan & Lander, Travis & Kari, Kari's sisters and mom too! We also had some neighbors and good friends! Canvas and Cocktails is so awesome, great for a fundraiser and it would be great just for a night out as couples, girlfriends or a kids party. The staff was so kind and so fun! To all of the people and the staff that attended, THANK YOU, THANK YOU, THANK YOU!

Field Day, Friends, and Family.

2010-06-01T22:06:00.000-07:00

I am so glad that Liberty was able to participate in field day this year. It's like a right of passage into summer break. She had a lot of fun and enjoyed being just one of the kids. We were very lucky to have her treatments fall the way they did in May. She has had treatment every 10 days as opposed to every week and it has been a great way to get in some regular life for Lib. She got to go to school quite a bit at the end of the school year and be a part of all the end of the year festivities, like field day. Her test scores stayed high and her grades were great. She will be off to 3rd grade next year, a little late due to heavy treatment, but nothing a monkey can't take care of!

Not only that but we got to have a special visit from my sister Lindsay and her little people! Liberty loves to help out with the little ones so this was a great way to keep her busy. Plus we love them and don't get to see them often enough!

Amazing People All Around Us.

2010-05-24T09:02:00.001-07:00

Broom Ball Crew

Broom Ball anyone? Once again our family, friends and school community have amazed us. My brother along with Mrs K. one of Liberty's second grade teachers, put their heads together and came up with a great fundraiser for Liberty's Fund. In order for this to come to fruition two other amazing ladies, Renee and Kelly also hopped in to help organize and make it happen. And of course all of the wonderful families who had their children participate we truly appreciate your love and support, without you it would not have been possible! Liberty had a great time, her cousins were there to support her, her classmates and teachers. We love where we live and go to school!

Confident.

2010-05-19T09:02:00.000-07:00

My lovely little Liberty. She is so self assured. It's the way she was made. She has always been willing to try new things , go new places and meet new people. She is so kind and considerate. Her hair is almost completely gone, just a few soft little blond hairs are hanging on. She wants them to stay as long as they like, and when they're all gone, so be it. We explored the wig route as you saw in an earlier post. The Shop and owner were great. We had a loving, giving angel willing to help us with the cost of the wig. But Liberty's natural confidence kicked in, and she said "I don't want to wear one, I'll just stick with hats and scarves or nothing at all." Such strength comes out of this little 8 year old. I am so proud of her, I learn so much from her everyday. I love her confidence.

Flashes of Hope For Lib.

2010-05-06T20:21:00.000-07:00

On Tuesday we went to the clinic for a quick blood draw to test Liberty's levels. I was sitting there and the nurse handed me a black box with a silver ribbon. It was the photos that were taken of the girls and I by Flashes of Hope , at the hospital when this all began. I hesitated to open it. I knew they would be beautiful. I knew they would take me back. The pictures reminded me where we have been and just how much has changed so quickly in our little family's life. Especially for Liberty. Her appearance has changed and will continue to do so. Her body has changed inside and will continue to do so. Her sweet little spirit has changed and will continue to do so. But it will all be stronger and more beautiful than ever. But it is hard to watch. I still want to take it all away.

There have been so many positive things that have happened in spite of this disease and because of it. Just when I think I have completely accepted this, I find I still have more to work at. We are trying so hard. I am so glad there are little "Flashes of Hope"

A Very Special Day.

2010-05-06T18:44:00.000-07:00

We were so happy that Liberty was feeling well the weekend of April 24th. It was a very special day for her as an 8 year old, the day of her Baptism. Liberty was baptized by her dad and became a member of The Church of Jesus Christ of Latter-Day Saints. It was such a wonderful day, filled with love, family, friendship and faith.

Baking Up Thanks.

2010-05-04T06:58:00.000-07:00

Liberty and I decided to do something special for the staff at her school. They have been absolutely incredible to our family. They have been so generous, understanding and loving. It has been truly amazing to us how supportive our school community is. The parents, the kids, and the school staff. We can't begin to say enough. I have a thank you list a mile long to prove it. We are trying to get cards out to everyone who has helped us during this rough beginning. (You all will get one eventually!) But for now we hope the teachers enjoyed a cookie of thanks.

Introducing.......

2010-04-27T15:08:00.000-07:00

Liberty decided we should show readers who is sitting in her desk at school while she is away. It is a cute little monkey, also named Liberty. It gets to go to specials and math and science. The awesome people at The Childrens Hospital use the Monkey In My Chair to help the classmates remember the student that is missing. I love it. It made me so happy to know that she would not be forgotten! Liberty met the monkey for the first time last week. And luckily her blood tests look great today, so the monkey will have to share the desk again this week.

Feeling Good.

2010-04-22T12:21:00.000-07:00

What do you do when you are feeling good? If you are Liberty, you get to go to school for a few hours, and be a normal kid. Take a quick test, have hot lunch and re-connect with your classmates. She was a little apprehensive last night but soon the excitement of having fun at school melted the anxiety away. I have been so close with her these past few weeks that it was a little hard for me to let her go. With a tear in my eye and a warm heart, I left her with her wonderful teacher for a feel good, normal day.

Don't make me laugh.

2010-04-20T12:19:00.001-07:00

If you know Liberty or our family then you know we love to laugh. Last week Liberty had a tough time after her spinal tap chemo. So tough, she was having trouble standing up straight and walking. She was in a lot of pain. So much pain that it hurt to laugh. We would be sitting there waiting for the pain med's to help trying not to laugh. And you know when you're not supposed to laugh, everything is funny! At one point Liberty said "Mom you are too funny! You can't talk to me any more!" It was hard, humor is our way of getting through this, through life in general. I am happy to report that we are laughing again and it doesn't hurt anymore. We just had a tap today, and the procedure itself was not as awesome as we would have liked (lots of extra pokes) but the end result seems to be better, she is walking, laughing and not in pain.

Down at the Wig Shop.

2010-04-14T09:21:00.000-07:00

M.R.D.

2010-04-12T06:54:00.000-07:00

Minimal Residual Disease: Evidence for the presence of residual malignant cells, even when so few cancer cells are present that they cannot be found by routine means. The MRD distinguishes who needs intensive and potentially more toxic therapy. Knowledge of MRD can effectively guide clinical care and increase cure rates.

Aren't we lucky that medicine has come so far that they can pinpoint the type of treatment we need. Liberty's bone marrow was sent to Seattle to have an MRD done so that the rest of her treatment could be road mapped to fit her needs. We are happy to say that we get to stay the course and avoid additional intensified treatments and increased toxic therapy! As I looked over the road map, I am so glad, this road seems intense enough as it is.

We are plugging along, some days are better than others. Liberty is smiling more and feeling better. She rode her bike this weekend and played with her best friend. Her energy is up and her attitude is positive.

We are off to find a wig today.......

A Child's Prayer.

2010-04-10T15:16:00.000-07:00

Pray, He is there;

Speak, He is listening.
You are his child;
His love now surrounds you.
He hears your prayer;
He loves the children.
Of such is the kingdom, the kingdom of heaven.

(A Child's Prayer)

Piles.

2010-04-09T19:59:00.000-07:00

This has been a hard week. I keep trying to think of ways to help, but being so far away it seems impossible. Actually, being close it would be impossible. Nobody can take away the day to day trials that this family is facing, the stacks and stacks of stresses and worries looming over their heads.

There are piles of medical bills and financial forms that need to be completed. Only Andrea and Chris can fill these out.

There are puddles of tears being shed from two sweet girls. One desperate for her body to be rid of this cancer, for life to return to normal, to take away her pains and everyone else's. And another who is seeking attention, who doesn't quite understand why everything seems so different. Only a mother can provide the love that these girls truly need right now.

There are loads of emotions being held in by a tired mother and father, who need to be strong for their family right now. There is never a good time to break down when a small person depends so much on your strength.

There are piles of fine blonde hairs that are falling from sweet Liberty's head.

And there are loads of people, desperate, so badly wanting to help. Don't we all wish we could shred those forms, hug those little girls, cry those tears, and switch places with Liberty? Oh how I wish I could take my sisters worries away. But the reality is we can't, we can't fight someone else's fight.

It seems so small, but we can only continue to be their supporters. Pray, write emails, make phone calls, send packages, donate to the fund, make dinners, offer any type of support you can think of. Maybe we can lighten their load, even if it's just a little bit. I for one am willing to try anything.

Change.

2010-04-06T23:27:00.000-07:00

Andrea sent this picture to me last night. Just when it seems like life begins to feel "comfortable" things seem to escalate and disturb the new-found routine. Liberty's hair is really starting to fall out now. The steroids have given her a new face and belly, and have even weakened her legs making it more difficult to walk. The stacked up chemo treatments are causing bad aches and pains, and the Tylenol is just not cutting it.

Today Anni and Libby went to the hospital again for another bone marrow aspirate and spinal chemo. On Friday they will discuss the marrow results and the upcoming treatment plan with the doctors. Of course we are praying for more great results and the least harsh treatment. Today was also the last steroid treatment for a while, and hopefully Libby's little body will react well to stopping cold turkey. The doctors say that her steroid swelling should go down rather quickly, but she just might lose her hair before she gets her face back.

A Birthday to Remember.

2010-04-02T07:12:00.000-07:00

What to do for such a special girl on her 8th birthday? A special surprise party. We told Liberty that we would just be having a family party this year; grandma's house, pizza, cake and presents. She of course was just fine with this and was so excited just to be feeling good on her birthday. Little did she know we had a few surprises in store. I called a couple of her close friends and invited them to come and help celebrate Liberty's birthday. She was genuinely surprised and so excited to see them! We also hired someone to come and paint faces and make balloon's for the kids. It was so nice to see Liberty smiling and having such a good time. She loved all of her gifts, but most of all she loved spending time with her friends and family. HAPPY BIRTHDAY LIBERTY!

Tradition; 8 things about our favorite 8 year old.

2010-03-31T08:02:00.000-07:00

Every year we sit down at birthday time and think about our children and what makes them special. Here is our list about Liberty age 8.

1. Liberty loves to write stories, and is great at it!

2. She is hilarious and has the best sense of humor.

3. She truly loves her family and friends and always shows it.

4. She is a deep thinker and loves to learn about almost anything.

5. She loves Littlest Pet Shops, still.

6. She is beautiful inside and out.

7. She loves animals, especially the cheetah and of course the beagle.

8. Her newest love is for "KIT" the American Girl Doll.

WE LOVE LIBERTY, and EVERYTHING about her!!!

Treatment today........

2010-03-29T14:51:00.000-07:00

Here comes the poke....

Yum!!

......birthday tomorrow!! We bumped up Liberty's chemo treatment to today so she could have a cancer treatment free Birthday. She turns 8 tomorrow and is still excited in spite of it all. The doctors got Libby some gift certificates and a cake for an early surprise, they're the best! Some exciting news for Lib; she gets to stop the high dose steroids in a week! Hooray! And her blood levels look good again. She's so awesome, and the doctors think so too.

Guide, Mentor, Helper, Teacher.

2010-03-26T07:52:00.000-07:00

Yesterday Liberty had a very important visitor. Mrs M. A second grade student sees their teacher as a hero, someone to look up to, someone they work hard to please. Liberty loves Mrs M. Her visit was just what the doctor ordered. To have the confirmation that she is indeed a current student, that she is remembered and loved, brightened her day. Liberty was so animated as she discussed the book "Wayside School is Falling Down." And did you see the beautifully knitted hat Lib's wearing? That is the work of a wonderful guide, mentor, helper, Teacher.

DAY 15.

2010-03-25T08:40:00.000-07:00

Leukemia Cells

This past Tuesday was our day15 of treatment. Liberty is in the Induction Therapy Phase; the purpose of the first phase of treatment is to kill most of the leukemia cells in the blood and bone marrow. Tuesday her bone marrow and blood were tested to see if the Chemotherapy and Steroids are doing their job. The Lab Wizards were looking for the percentage of Blast Cells in Lib's body. Once your cells have been looked at you are placed in a category. We prefer to call the categories, clubs. There are two clubs, you can only join one. The first and more desirable club is the Early Rapid Response Club. She would need 5% or less blast cells to join. If her blast cells were more than 5% she would have to join the Slow Rapid Response Club, where members have their treatment path intensified. We are proud to say that Liberty made it into the Early Rapid Response Club!! YAY!! The Lab Wizards found 0% blast cells. So we stay the course and stay strong! Way to go Liberty's blast cells!

Curled Up.

2010-03-25T07:36:00.000-07:00

Yesterday Liberty had a rough start. She woke up with stomach cramps, and had to leave breakfast without a bite to lay on the couch. She stayed there for an hour or so. Then she woke up and headed to the bathroom, barf, yep, barf. We made her a comfy spot to curl up on in the hallway. Body Pillow, blankets, pillow pet. She stayed there for almost 4 hours, sleeping and not wanting to move. She is so sweet and so tough. The Zofran started to work and she made her way to my room for cartoons, 7-Up and Saltines. The day ended with a large dinner, clearly feeling much, much better.

Back On The 7th Floor

2010-03-23T17:32:00.000-07:00

This time we are out-patients. Liberty had to go and have a Bone Marrow Aspirate, spinal tap chemo and an IV push chemo up at the big hospital today. It sounds quite intimidating. However it went extremely well. We have another thing to add to our thankful list: Propofol. Libby was under anesthesia for these procedures and woke up happy as a lark and ready to eat! The steroids have increased her appetite to that of a 200 pound man, but hey, at least she's staying well-nourished. She was able to pick a new hat today and was given an awesome "Bag of Fun", full of super rad things to do.

Another little blessing for Lib today was being able to see a girl her age smiling and happy, picking a new hat for her bald head on her way out. Liberty whispered, "hey mom, she's just like me, she has cancer too." And I saw Liberty smile. Now she really knows that she is not alone, she is not the only one. There is always a positve with the negative. Now we just wait for the Bone Marrow results that will let us know if the Chemo and Steroid treatments are working their magic. Please send positive thoughts this way.

Training.

2010-03-21T21:57:00.000-07:00

Andrea loves to run. Have you talked to her? She LOVES to run. Before, running was a hobby, now running is a necessity. It's a reason to get out of the house, to breath in the cool, fresh air, to forget the day to day worries, to have something that is only for her.

Months and months ago, before this whole cancer thing even started, Andrea convinced her running partner and sisters to run the Rock 'n' Roll Marathon over here in San Diego. Because of injuries and general wussiness from the sisters, we opted to run the half marathon. Can you believe the letter that I found in my mailbox!? The run is to benefit the Leukemia & Lymphoma Society! We had no idea, what a strange coincidence. Suddenly this run has taken on a whole new meaning, and motivation for training is no longer an issue. This one is for Liberty.

The Final Cut

2010-03-18T17:16:00.000-07:00

We made a quick stop at the salon today. We had our hairdresser cut Liberty's hair into our regular short signature bob. I thought shorter hair might make the transition she will inevitably have to make, easier. Liberty has decided that when she gets a wig she wants it to be her exact color except long. I thought this was a great idea since I am somewhat of a "bob snob" when it comes to my little girls hair ;) The long hair will be fun to style, and she is somewhat excited for this part of the journey. Isn't her face gorgeous?!

It's Time To Chat....

2010-03-16T08:40:00.000-07:00

One of Liberty's favorite things to do is talk. Just ask any of her teachers :) And because phone calls can seem overwhelming at times, we wanted to set up an email just for her. This way her friends and family can write to her and she can write back! However don't forget to check the blog and leave messages there as well, she checks it everyday. Email Liberty at libertychats@gmail.com . And don't worry I (the mom) will be filtering for her, but hopefully it's only good mail and no spam. She looks forward to "chatting".......

"Freaky Friday"

2010-03-15T06:39:00.000-07:00

Little Lib

Yes, I know it's actually Monday. But even so, I feel like I am stuck in that movie. When I was sick and taking steroids and doing chemotherapy, Liberty was my unconditional supporter. She was my smiling, happy and giggling little toddler. She loved me no matter how I looked or felt. And now, somehow our roles have reversed. She is the one who is sick, I am her unconditional supporter. I wish I could take it all away. I would do it all again , in a split second so that she wouldn't have to. But I can't. So I will try to be the best I can be, for her.

I'll be on my knee's if you need me.

Finding the positive.

2010-03-12T21:11:00.000-08:00

Things to be thankful for today, in no particular order:

NUMBING CREAM (takes the sting out of the injections)

ADHESIVE REMOVER (medical tape is like band aids x 1000)

NICE DOCTORS & NURSES (makes the 1 hour turned 4 hour appointment much more bearable)

IV FLUIDS (Libby was pretty dehydrated at the doctor today, the fluids made her feel much better)

COMFY CLOTHES (not quite jeans and not quite pajamas = perfect)

MOVIES (the perfect way to escape)

SPICY FOOD (chemo causes taste changes, Libby can't taste bland foods anymore)

HATS (soon to be a staple in the Tyus home)

BEADS OF COURAGE (Libby gets a bead for each procedure, treatment, needle poke, etc... she has already earned 20, in just 7 days)

PROFESSIONALS MIRACLES FOUNDATION (an amazing organization that awarded Libby with an amazing grant)

Spread the word.

2010-03-12T20:31:00.000-08:00

It is amazing how quickly word has spread about Liberty's recent diagnosis. It has been touching to hear from long-lost friends, friends of friends, and people we don't even know. We really appreciate all of the encouraging comments from everyone, I know that Liberty has enjoyed reading them! I created a button that can help us spread the word even further. If you have a blog or website and would like to help, copy and paste this code to your HTML/Java script:

This button will link your readers to this blog and hopefully we will receive a great response. Thank you a thousand times!

Baby Steps.

2010-03-11T21:51:00.000-08:00

Going home causes mixed emotions. Sleeping in their own beds, being surrounded by family, and no more tubes and tape seem like a dream come true. But the good can quickly be overshadowed by the fear of what's to come. Liberty not going back to school, so many new medications to keep track of, the mailbox full of confusing bills, and a new way of life seems so overwhelming.

Today Liberty's legs were "numbed" for her first round of intramuscular chemo injections in each leg. She was finally allowed out of her room to go home, but couldn't even walk out.

Everyone is anxious to find a new normal, to get settled into a new routine. Tomorrow will be another visit to the doctor.

Practice.

2010-03-10T13:28:00.001-08:00

The volunteers came around with a wagon full of handmade hats for the kids to choose from. Liberty loves red. She will look great in any hat she chooses to wear. This is good practice. Today has been hard.

More from the Fun Sunday.

2010-03-10T08:15:00.000-08:00

Though the days have been long and trying, we have cherished the moments when Liberty gets to forget her trials. Sunday was that kind of day.

How cool is it that all of these people volunteer their time to cheer up the patients at the hospital! Liberty and Chris definitely enjoyed it!

A fun picnic with cousins who adore our sweet Libby!

Buddies enjoying some much needed time together!

We really appreciate the outpouring of support and love for our dear Liberty. She has thoroughly enjoyed all of the neat gifts, visits, phone calls and blog comments. They have softened these hard days in the hospital and will continue to do so in the long days to come. Thank you!

Sister.

2010-03-09T11:14:00.000-08:00

I found this email in my inbox today. Sent this morning at 3 am.

Subject: it's 3:00 am i must be.....

....lonely, uh must be early cause I'm quoting a match box 20 song. What!?

So Lib has had to get up and pee every 2 hours. I told the nurse "you try to stay out as much as possible to keep Lib calm and asleep." Therefore I am changing the "hat" not a cute one or one that smells super good, but the pee hat, I should be getting paid. But like Kung Fu Panda, "there is no charge for awesomeness, or attractiveness" Plus I really don't mind.

Man I love this little girl of mine she has so much spiritual strength. She really is still taking this like a champ. We as adults would be losing our marbles, crying and super mean if it was us.

We finished the book Freckle Juice. And we just started the book "Matilda" by Rhoald Dahl, very cute.

She was coming up with all sorts of scenarios last night that would involve kids making fun of her. And then all sorts of responses "just in case". This kid loves to be prepared, Heavenly Father must have prepared her well before she came.

You're probably like, Anni get back to sleep. But man this bed is so comfortable that I just can't. :)

I'm so thankful for the out pouring of support for her. I'm so scared for the day that life gets to busy for everyone else around us. But maybe by then we will have gone "Pro" and we will be able to handle it.

I miss my mean little cowgirl. But somehow I am making it. Thanks Jen for being her surrogate mom right now.

I wish our fat beagle could make his way up here and stay. Something about an animal's unconditional love, there is nothing like it.

My little girl has to do everything I hated and feared when I did treatment. NOT FAIR. I bargained with heavenly father to keep my hair so I could roll with the steroid fat face. There is no bargaining for her it is inevitable. Lamesauce all around. I feel so bad for being such a baby back then.

Guess I'll stop my flow of random thoughts.

Love you guys

Anni

I have a sore throat. I need it to be gone. I cannot be sick, I don't have time.

Lindsay said I should try and have Liberty's Party early while she still feels good about seeing other kids. Probably just our super close friends and family. I'll ask her Doc today if that could happen. If she doesn't feel to yucky. Maybe we could do an early baptism too? I don't know just a thought.

I love my sister so much. I hate that she has to go through this all over again. I'm so thankful that she has her humor. Have you ever met my sister!? She's HILARIOUS! We were talking on the phone late last night, and she had me in tears- the happy, laughing kind. Why is it that she is cheering me up? It's a blessing that will help us all power through these tough days.

A Post From Liberty.

2010-03-08T21:04:00.000-08:00

Thank you everyone for leaving comments on my blog :) I'm glad that I know you and that you're nice enough to do this for me. I have really liked all of your words, and the fun things people have sent me. It's not comfortable being in the hospital, but if it means I can get rid of my cancer, then I'm fine with it. Once again THANK YOU.

From Liberty

P.S. Thanks Lindsay for making my blog.

Acute Lymphocytic Leukemia.

2010-03-08T21:00:00.000-08:00

Finding the bright side of things lately has been really difficult. It's like walking through a dark tunnel not knowing where to go, what to do, what day it is, what time it is. But at least today we have some answers, and possibly see a tiny glimmer of light at the end of this very long tunnel.

Liberty has Acute Lymphocytic Leukemia or ALL. This type of leukemia is a cancer of the blood and bone marrow. It is the most common type of cancer in children, and prolonged, aggressive treatments have a high chance of resulting in a cure. Unfortunately the road to get to that cure is going to be long and bumpy.

Treatment for this cancer follows three phases. Induction, consolidation and maintenance. Liberty began the induction phase on Friday with the chemotherapy treatment injected into her spine. Today, despite her high fever, cold, and breathing troubles, she was given another round of chemo through the port in her chest. She will continue chemo treatments weekly, high doses of chemo steroids twice daily, chemo injections in each thigh, weekend antibiotic treatments, and a slew of other medications to try to protect her tiny body from the poison that it is being exposed to. March 15th and 29th she will go back under anesthesia for yet another spinal tap, spinal chemo, and the dreaded bone marrow sampling from each hip. This aggressive phase will last for 36 days.

Liberty is staying strong and is ready for the fight. She is trying to stay positive and has found that the new ipod she was given is a great way to tune out the nurses and doctors when she doesn't like what they are saying. Andrea and Libby are excited to leave the hospital sometime this week to settle into this new so called life.

I love the motto that they came up with: "We don't hate anyone, and we don't hate anything, but we DO hate cancer!" What a sweetheart!

Text.

2010-03-08T15:45:00.000-08:00

We received this text message from Chris today.

Not all that great.

She found out that she would be losing her hair

and was diagnosed with leukemia.

We have to be strong and keep marching forward.

She's in good hands.

This is not what we were hoping to hear. I will update when I have more information. Please keep praying.

Almost 8.

2010-03-08T10:33:00.000-08:00

Last year on her 7th birthday, Andrea posted on her blog seven of her favorite things about Liberty.

Best big sister EVER!

1. She is kind to everyone, no exceptions.

2. She loves school.

3. She loves to talk, A LOT.

4. She has an amazing memory, and imagination.

5. She always finds the positive side to everything.

6. She loves to play soccer.

7. She loves "My Littlest Pet Shops", A LOT.

Libby's 8th birthday is in 3 weeks (the 30th of March). I hope that her list doesn't change. I know she will remain kind as she has the purest of spirits. I hope she continues to stay positive, and find reasons to smile and laugh. I pray that this battle only makes her stronger, and if possible an even more amazing little girl.

Good Sunday.

2010-03-07T21:29:00.000-08:00

Today was a good day for Liberty. The doctors removed all of her tubes and let her enjoy a picnic with the family. She is one loved little girl! She ate all of her chicken nuggets and french fries, took joyrides in the elevator, and put makeup all over uncle Travis's face. She enjoyed a visit from a friend, and best of all, a visit from the whole Star Wars crew. It's possible Chris enjoyed this more than any of the children. Liberty was allowed to feel like a normal kid for some time.

Liberty as Padme` Amidala last Halloween. She LOVES Star Wars!

Back in her room a new fever was discovered. Chemotherapy knocks out the immune system. The fever might be a symptom related to the cancer or she may have caught a virus. Tomorrow the reality will set in again. Meeting with a team of doctors, results from the surgeries, and if her health permits, another round of chemotherapy. We love Liberty, and pray that tomorrow doesn't weigh too heavy.

Management.

2010-03-06T22:04:00.000-08:00

Today Liberty woke up at 4 am in pain. Still, no rest for the weary. Once the nurses got the pain under control, a few hours later she was able to sneak in a nap, and mom and dad snuck in a couple of laughs. Laughter is priceless right now, it seems to be the only escape from this harsh reality.

No test results today like we were hoping, but they will come in due time, and we are all praying for some good news. Today was all about pain management, fighting the nausea caused by the chemo, figuring out medications, and consoling a little girl who is beginning to grasp her new reality.

Liberty's fund.

2010-03-06T21:23:00.000-08:00

Just fyi, Andrea's awesome friend has set up a paypal account for Liberty while we work on getting her fundraising account set up through the bank. The donation link in on the sidebar.

Tested.

2010-03-05T23:25:00.000-08:00

Friday was another day. Andrea, Chris and Liberty all had breakfast together early in the morning, a final meal before Libby had to begin her day long fast to prepare for the tests. Water really doesn't curb the appetite, but she hardly complained.

First up was a PET scan to take a closer look at the cancer in her body. Liberty was a champ, she held really still, she laid there listening to the humming machine and the crying kids just down the hall. Liberty didn't cry. The test showed the obvious clusters under her arm (which have significantly grown in just days), a problem area under her clavicle on the same side, and some possible bone marrow involvement in her pelvis and spine.

Next is the surgery. Liberty had developed a fever which gave the doctor's reason to get her in sooner than planned. Libby wore a purple hospital gown with a purple and blue star gown over it like a robe. Anni and Chris were outfitted in big white bunny suits, or so they're called, with masks and hairnets. They joked that they looked like they were ready to make the world's most sterile pizza. This procedure involved removing one whole lymph node (the size of a small egg), this tissue will be used for a more in-depth biopsy. Next they inserted the port in her chest, this is where the doctors will administer medications and the chemotherapy. Then the oncology doctors stepped in. They took bone marrow from two places in her pelvis, did a spinal tap to remove fluids for testing, and injected her first round of chemotherapy into her spine. Mid-surgery Andrea spoke doctor again and told them to give Liberty some anti-nausea medication. Chemo can make you sick to your stomach, something Andrea is all too familiar with.

At 10:30 pm Liberty was gradually coming out of the anesthesia, and finally getting to eat something. Andrea and Chris were so tired, both feeling too guilty to eat and sleep all day, but so happy to have their positive little girl awake and smiling. Tomorrow will be another day. Tomorrow there will be a more definitive explanation of this lymphoblastic lymphoma cancer that Liberty has, tomorrow we will know if leukemia will or will not be a part of our daily conversations.

Please pray for this family.

Heavy Thursday.

2010-03-05T23:01:00.000-08:00

This chapter of Liberty's story begins with two bouncy ball sized lumps under her left arm. She showed these to her mom on Sunday night. Andrea speaks doctor as a second language, and in just three days Libby had a blood test, an ultrasound, and a biopsy. In most cases a mother wouldn't tell the doctor she wanted the blood work done stat, or tell the radiologist that she would like the results tomorrow instead of after the weekend, but thankfully Andrea is very fluent in doctor.

And this brings us to Heavy Thursday. I will never forget the phone call I received from my sister early that morning. "Liberty has cancer", the sound of her broken voice still rings in my ears. We weren't expecting results until that afternoon. We weren't expecting those results.

Liberty didn't have school that day, instead of a relaxing day at home it got really heavy, really fast. Off they went to see the doctor for further explanation. They knew from the biopsy that Liberty has Lymphoma cancer, but more testing needs to be done, feel free to head straight over to the hospital they're told. There they would "sleep" and wait for what the next day would bring.

Sweet Liberty.

2010-03-05T19:30:00.000-08:00

It all started March 30th, almost eight years ago. The sweetest girl was born to an excited mother and father. Andrea was made to be a mother, and Chris a father. Together they made a peaceful home.

While Liberty was a happy, giggly baby, her mother faced some hard trials. The pregnancy caused her Lupus to take a turn for the worse. Andrea had to take some of the focus away from her newborn joy, and use it to fight this mean disease. It was a long road of chemotherapy, steroids, and so much more. Today she is in remission.

Today, almost eight years later, Liberty is in the hospital with an uphill battle of her own. Right now Liberty is learning about the cancer that is rapidly growing in her tiny body. Right now she is wondering why she has to miss so much school, why she has to know the hospital so well. And her loving parents are wondering why this all seems so familiar...