another big day

Well, tomorrow is Charli's first day of going back to daycare. I could just cry thinking about it. It is about 10x worse that taking her to daycare after maternity leave. We will only be taking her there about 1/2 the hours she would normally go, I do not want to risk her getting too sick if we end up starting chemo again in August.

For the past four months I have been her primary caregiver. I have rocked her as she ate, put her down for naps, etc. I am just not ready to give that job to someone else again. Granted, I did have a lot of help from her Grandma Preister and Aunt Amanda - but they came into our home to care for her...so it didn't seem like I was "leaving" her with someone else. Silly, I know, but it is how I feel.

We LOVE Lynn & Lonnie, and are so blessed to have them to care for Charli - so don't get me wrong! We couldn't ask for anyone better! But, I am jealous that Lynn and the other kids will get to spend their time with Charli - and I won't :-(. I know that after a day or two of her being back in the routine, we will all be fine. I just know what I am missing out on, and it hurts.

We also hope that Charli takes the transition okay. Since chemo she has been a very picky and tricky eater. Sometimes ONLY eating at home. I pray she isn't too much of a pickle for Lynn!

I got very sad as I packed her bag for tomorrow. I don't want to share her with anyone! Dear Lord, help me. If I am this sad now, what will I be like when she starts school, has her first boyfriend (when she is 45 her dad says), graduates school. UGH, my stomach hurts just thinking of it! Now I understand why some moms get teary-eyed when their little girls start using deodorant (YOU KNOW WHO YOU ARE!!!!!!!!!!!!!)

But, since she has to go back - there is NO place I would rather her go then to Lynn and Lonnie's house! They treat her like she is their own, and love her to pieces! And, most importantly Charli's loves them back! She will be fine, it is mom that I am worried about :-D

Walk for LIFE

made by Grandma & Grandpa Preister

(Charli had 6 or 7 total, including one from Grandma & Grandpa Borg and other family and friends)

this was taken right before the survivors lap


WOW. What an amazing event to take part in. The sea of purple was overwhelming, bringing me to tears more than once.



All survivors wore purple shirts.



Opening ceremonies started around 7:00 with awards and honors given. The first lap was reserved for survivors only. Charli was the youngest, but sadly not the only child. We saw two other children under the age of 6 and I know there was at least one teenager that should have been there, not sure if he made it or not. The second lap was for caregivers and survivors. Grandpa and Grandma Preister came down and were able to take part in that lap with us. I was so glad to have someone there with us. Chad and I didn't give any thought to wanting family there for/with us until after the fact. The first lap was so emotional, everyone was clapping - for the entire lap. Of course it was happy clapping, applauding the strength and courage of all the survivors. It was bitter sweet for me. Before the lap all survivors spoke their name and how long they were cancer free into a microphone for all to hear. I said Charli's name "Charli Ann Preister"..."still in treatment". The person holding the mic interrupted and said "baby Charli Preister". That was hard for me to hear, I am not sure why that moment was hard...but it was. It was after that, that we took our first lap. We ended up taking a few laps around.



Charli was popular! Anyone who noticed she was in a purple shirt came over to talk with us and meet her. I know it breaks everyone's heart to see such a small child struck with this illness. We were blessed with so many kind words from strangers last night, and from those of you who we knew.



Grandpa and Grandma then offered to stay at the house so Chad and I could go back to the walk for the luminary ceremony. I am so glad we were able to do that. We did not stay to hear them say Charli's name, it was 11:00 and they were only to the "E's" they had so many names to say. However, we did get to take part in a touching poem, the silent candle-light lap, memorial song, and a memorial video.



It was a great experience. So sad to think of all the people effected by the event that brought all these people together.



Another time I will tell you about a very neat lady I met...Ben Hoover's mom, Launa. She lost her son five years ago, he was 18, to cancer. She did amazing things this year. Bless her heart. I am lucky to have met her.

I recommend that everyone take part in the Relay for Life in some way or another. I know that I have posted that they do not donate a lot of funds to childhood cancer, and that is correct. However, the feeling that you are left with after walking away will stay with you for life. At the end of the day, it is about the willingness to fight for a cure that is what matters.

11 months has come and gone

It is so hard to believe that 11 months has come and gone, and my baby is on her way to being one year old.

Two seconds ago I got a call from my sister-in-law, Kara, who is about ready to have her baby (any day now!!) and hearing her talk about the baby boy that is about to be brought into this world, and to hear the excitement in her voice is just amazing! I remember the feeling Chad and I had before Charli was born. Not truly knowing how our life would change, yet knowing that it would never be the same. Needless to say, we had no idea what was to come! The anticipation of waiting to bring a new life into this world is priceless, and I believe there is nothing like it! Obviously, once they baby arrives the REAL miracles just begin...but nothing compares to the preparing for the baby!!!

Anyway - here are some new pictures of Charli! We are going to the Relay for Life tonight in Columbus, Charli will take part in the SURVIVORS lap. I am not sure how I feel about going, I think it will be very emotional, probably in a good way - but I am a bit scared either way. Then, at 10:00 our GREAT friend Linda is coming over to stay with Charli so Chad and I can take part in the lighting of the luminaries. I will take a lot of pictures, and try to take in all that is around us.

Also, I want to take a quick second to thank all of you from the BOTTOM of my heart for all the love and prayers you have sent out for our little girl. I know that modern medicine does wonders when it comes to cures and health, but I know that at the heart of everything there is God. Thank you for bringing Charli to the top of His list, He has taken amazing care of my baby...and for that I am forever thankful. I pray that God will bless all of you, the way he has blessed me.

my 11 month birthday!

Bedtime stories with daddy!

me and my cousin Derek, I am so cute in hats!!


this is my cousin Colton, we had a picnic this day! F-U-N

beep-beep

everybody loves their grandpa!

let's say it again

I know I have posted this before - but it has so much more meaning now then
it did in the past, and I wanted to share it again!



Before I was a Mom...
I slept as late as I wanted and never worried about how late I got into bed.
I brushed my hair and my teeth every day.

Before I was a Mom...
I cleaned my house each day.
I never tripped over toys or forgot words to a lullaby.
I didn't worry whether or not my plants were poisonous. I
never thought about immunizations.

Before I was a Mom...
I had never been puked on. Pooped on. Spit on. Chewed on. Peed on.
I had complete control of my mind and my thoughts.
I slept all night.

Before I was a Mom...
I never held down a screaming child so that doctors could do tests. Or give
shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a simple grin.
I never sat up late hours at night watching a baby sleep.

Before I was a Mom...
I never held a sleeping baby just because I didn't want to put it down.
I never felt my heart break into a million pieces when I couldn't stop the
hurt.
I never knew that something so small could affect my life so much.
I never knew that I could love someone so much.
I never knew I would love being a Mom.

Before I was a Mom...
I didn't know the feeling of having my heart outside my body.
I didn't know how special it could feel to feed a hungry baby.
I didn't know that bond between a mother and her child.
I didn't know that something so small could make me feel so important and
happy.

Before I was a Mom...
I had never gotten up in the middle of the night every 10 minutes to make
sure all was okay.
I had never known the warmth, the joy, the love, the heartache, the
wonderment or the satisfaction of being a Mom.
I didn't know I was capable of feeling so much before I was a Mom.

sneak peak

There is a book out there called When Your Child has Cancer... Reflections from a Mother's Heart. Many times I have been asked "what is it like" having a child with an illness such as NB. Well, I know that I can never portray all the feelings and emotions that go along with it - I thought that these things listed below said it better than I ever could! A friend told me about this book, I have ordered it, but not yet received it. I am sure I will post more once I have the opportunity to read it for myself. I hope you all know that you can ask me any question, any time - I don't want you to feel that you just have to "guess" what we are thinking/feeling, if you want to know anything, just ask!

*I must start by saying that I (sadly) can relate to each and everyone of these points!*
When your child has cancer...

You cry a lot, and then you cry some more.

You have a hard time focusing on more than one thing at a time.

You carry hand sanitizer with you wherever you go.

You lose your short term memory and your ability to multitask.

Your children watch a lot of movies and videos and you don't feel guilty.

You have times when you fall apart for no apparent reason.

You are proud of your child for being so strong, brave and resilient.

You cry when your child loses their hair, and cry some more when it comes in a completely different color.

You forget what normal feels like, and then realize it needs a new definition.

You find that people elevate you to the revered position of "super-mom" but then you don't really have a choice, do you?

You allow yourself to indulge in magazines and DVD's that you enjoy, just so you can have a temporary break from reality.

You appreciate family gatherings and holidays more than you ever have in the past.

You don't have the emotional energy to return phone calls.

You need to know your child's ANC...ASAP.

You find yourself casually detailing what has happened in the last two weeks to a friend and then notice she is getting teary-eyed and trying to grab your hand.

You are surprised at the kindness of people that you hardly even know.

You would do anything to trade places with your child.

You feel an instant bond with any mother of a bald-headed child.

You appreciate every moment of life like never before

THIS is what life is all about

What an AMAZING few days we have had! Saturday we braved the "crowed" and went to the Duncan Rib Fest with my parents, Grandma & Grandpa Preister were also there! Charli was bored but handled it well!

Sunday Chad and I thought all day about what we could do to make the day special...finally at 3:00 we decided to load Charli up and take her to Humphrey to visit the baby kitties that she saw a few weeks ago. It was one of the funniest things I have ever seen! I can't post all of the pictures, because she was pretty "violent" with them, but I PROMISE that no baby kittens were hurt during her experience, in fact they loved her even more after she loved them so physically! I guess what my brother used to say is true, if you are mean to cats, they love you even more - a bit odd but tested and confirmed!

Today Charli and I went on a nice walk this morning and came back for a short nap. When she woke up we met her Aunt Vicki and three of her boys at the park for a picnic and swing ride! I will post pictures from that later, they are not uploaded yet!

It is such an amazing feeling to know that Charli is not going back for chemo anytime soon. Although, I will admit I do feel like I still have a "monkey on my back" not knowing what is to come in that department. I know that to most people, our fight is over - that is far from true. But, unless you have been in these shoes you don't really know how they feel - and I understand that...and I am sure it appears that way, but trust me when I say that it isn't. And, although we have received great news, it isn't over...it will never be over.

Enjoy the pictures :-)

everyone needs their daily water intake!

and some protein...?

i LIKE kitties!

just sitting and playing in the grass!

swinging in Humphrey

Grandma Preister decorated our house when I came home from the hospital a few weeks ago...such a fun and cute suprise!

MY food! (icky!)

spending the day with daddy on Father's Day

MY DAD IS THE MAN...is yours?

I LOVE BATH TIME!

Cautiously Optimistic

Yesterday was a day of emotions, decisions, choices, and worry.

Before going down to have our consultation with Charli’s primary oncologist we thought we had three options for moving forward with her treatment plan. We thought we would have the option of continuing treatment, stopping treatment, or surgery. Upon our arrival we were told that we only had two safe options. I will tell you a little about each option, maybe this will help you to know why we made the decision we did.

As a prelude, Charli’s tumor has shrunk at least 75% with the four rounds of treatment. The mass that is left is near Charli’s spine. The mass that is left may or may not be cancerous at this time. It is possible that what is left is an “empty” mass, and that would not be helped with chemo, nor would leaving it cause harm. However, if the tumor would grow treatment would be necessary.

SURGERY
This option was quickly dismissed when the risks were discussed – and basically not even considered as an option. In order to get to the mass that is left in Charli’s spine surgery would not only be tricky but also dangerous. Some of the side effects of surgery would be deformity caused by the breaking of the bones to get to the tumor, along with other more scary possibilities.

CHEMOTHERAPY
We could continue with four more rounds of treatment. Doing this does not guarantee that the mass left in Charli’s spine would shrink. The drugs used for Charli’s chemo have side effects that may not be seen for years, not to mention the risks that she is exposed to while in treatment. Some of the acute effects we would worry about would be low blood counts, infection, and illness. The long term effects can range from learning disabilities to heart damage. We could move forward with Chemo and in four months when we do the next CT scan it is possible that we would see no improvement, meaning it was not necessary. Or, we could see a decrease in the tumor – meaning it was the right choice to make.

MONITORING
We had the option of monitoring Charli’s mass on a regular basis to track what it is doing. By choosing this plan every 6 weeks Charli would undergo a CT scan to evaluate the tumor that has been left behind. Best case scenario is that the mass would stay the same or shrink on its own. Worst case scenario is that after 6 or 12 weeks we would see a growth of the tumor. At this time we would evaluate the results and possibly choose to do chemo at that time. This option banks on the fact that Charli’s body will be growing at a “rapid” pass while the tumor (hopefully) would stay the same size or be smaller.

When Charli was diagnosed three months ago her tumor was in a dangerous spot because of its placement, which made quick treatment necessary. Thank God, the treatment worked and Charli has regained her mobility.

Okay, before I tell you which option we choose I need to preface it with saying:
This is the choice we made, we feel confident in it for reasons that may or may not have been discussed on this blog. We ask that you do not question the decision we have made, it was not an easy one. There are several risks and benefits to all the options discussed with our Dr. and unless you were in the room with us, it is impossible for you to know which option would be right. We realize that no matter which choice we make we may always wonder if the other option would have been better. However, we are not going to allow ourselves or others to think this way – because this is the choice we have made, and we will move forward with it. We do thank you for supporting our choice and respecting the sensitivity of the issue at hand. Knowing that whatever decision we make may or may not have a lifelong effect on Charli is something that we were not prepared to do when all of this started…most of what has happened in our life the past four months we have not been prepared for. Most of all, thank you for your support.

Our decision has been to monitor Charli’s tumor and evaluate the status every six weeks. If in six weeks the tumor has increased in size we have the option of “changing our mind” and moving forward with the next four rounds of treatment. This method is not an absolute answer. If at anytime we feel we would like to change our mind and move forward with treatment with have that option. Also, if we have a feeling that something isn’t right we can move her CT scan up and get her checked at anytime. We feel that this is the safest plan for more than one reason. By choosing this option we are not pumping Charli’s little body with potentially dangerous drugs, if not needed. And, at this time we can not say we are 100% sure if chemo will work. Also, this option will allow us to change our mind and move forward with another treatment plan at a later time. If we choose to move forward with chemo, we can not take that back. Surgery would also be an option that we could never take back if it did not go well. Although it is possible that in six weeks we will need to move forward with more treatment, we will know that we are doing it out of necessity and not pure hope.

This was a painstaking choice, and one that no parents should need to make. However, Charli’s progress was not typical in some instances.

Our Dr. was comfortable with our decision, and agreed with the choice we made. I did ask her very directly what she would do if this were her daughter or granddaughter and she told me that she would have to sit and do the same thing we were doing…weigh our options. Charli’s situation is something that specialists are going to start large study on, the success rate of monitoring vs. continuing treatment. We hope that in several years from now there will be hard data that will help other parents make this decision, but until then – we just have to trust our gut, our doctors, and God.

I will post more later, I am a bit exhausted after writing this. I have so many pictures to post from Father’s Day and other events…I will try to do this later this weekend!

say your prayers

Tomorrow afternoon we are packing up and heading to Omaha again. At 2:30 we have an "appointment" with Dr. Thompson to discuss our options for treatment. We feel good about having options at this point, nervous about having to make a decision.

I think at this time I will wait to go into detail until after we talk with her doctor tomorrow, so I can give accurate details of each option. I am not sure what to expect for the day...will we have an answer or more questions - we don't know.

Please pray that we make the right choice for Charli's next step. At the end of the day we are her parents, and must feel comfortable with whatever treatment she will get.

let's play a game, called HURRY UP AND WAIT.

Oh boy! The good Lord has given two of the most impatient people a BIG challenge in life...waiting for something at every corner!

Charli had her CT today, and she did pretty well. Her last "meal" was at 2 am this morning, and she didn't get to eat until close to 2:00 this afternoons. She is a tough cookie! The test was on time today, we were thankful for that. We did run into a change of plans with Charli's sedation. The last time they sedated her she wouldn't fall asleep so they had to use something different this time, but it would keep her sleeping for about two hours...so we were not able to leave the hospital until 3:30, we were checked in by 8:00 this morning. Once she woke up, she was like a drunk little salior! Poor thing, she just couldn't get her balance! It was a long day, but not one of the longest - and I think it went pretty fast.

I am hoping to get a call by Thursday about our next plan of action. I am so nervous and afraid of what they will say, and I know Chad is too. All I want is for the next step to be the right step, the first time...and I want it to be over. We are so blessed to know that this treatment is working so far on Charli - so many families do not get that news, so I am thankful for that. Remember Penelope...her parents would have given anything and everything to just hear that SOMETHING was working, and here I am - sometimes I feel so selfish.

I will post something as soon as I get "the" call later this week. I have some other pictures and stories to post. This weekend was Chad's sisters (Jennifer) baby shower. All of Chad's family came to the house for pizza that evening, and we had a nice time...I will tell all about it later - once this is off my back!

Thanks for checking in! Please keep Keira and her family in your prayers and thoughts today as she goes in for her scans tomorrow (Wednesday) and will review the results on Friday with their dr. So many people are holding their breathe this week. Regardless of what we hear this week, we know that we can move forward...and I think that will make everything alright.

Never take the slightest thing for granted, to the person next to you, that thing may be their world.

just to be clear!

I guess I didn't word my post about Friday very well, since I have had many questions about it! Let me try to add to my previous story!

Originally the plan for our family was to go to Omaha Friday, Charli would have the MRI and then later that evening she would continue with three days of chemo - completing her 5th round of therapy. However, once we got there we spoke with a different doctor who did not feel comfortable doing that until the CT scan was done, to obtain more information about her tumor.

The CT machine was down, and we were not able to get an appointment until Tuesday...so we came home after her MRI. Charli did not receive chemo this weekend.

We aren't 100% sure what to expect. I assume we will have the test Tuesday and wait for the doctors to look over both tests and decide what is best for the next step. However, I imagine that there is a possibility of staying down Tuesday to continue treatment - but that is not what I am expecting.

Anyway...just thought I better clarify because I have had so many people ask if she handled treatment well this weekend!

Hope to have more info soon - I will post as soon as I can Tuesday.

I hope everyone had a great Father's Day!!!!!