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What started out as a site to update on our daughter's cancer has thankfully grown into a site to update on our beautiful family of four. Enjoy our journey...

Saturday, April 04, 2009

late, but not forgotten!!

So this is about five days later than I thought it would be, I am sorry!! I know that because I waited so long I will forget some of the things I wanted to talk about last weekend!!

Charli was a great trooper last Friday when she had her scans. I know that I always worry about how she will do in these situations, and she always exceeds any expectations I had...I should learn by now! If I could write gthe story how I would have wanted her day to go, I probably would have planned on at least one or two melt downs...but she had none!

We got to Omaha a little before 8:30 for her 9:00 scans. Of course at 9:15 we were still playing in the waiting room! Shortly after 9:20 she got to go back! Luckily for all of us the waiting room wasn't full for most of the time so we didn't have to worry about her noise or space!! When we checked in we were told that only one of us would be able to go back. Chad, being the great husband he is said that I could go. Which, I felt bad about because he had worked with Charli the night before on how she would need to lay still and be a big girl, etc. He explained to her that mommy and daddy would be right there holding her hands, etc - and she totally understood, so I knew he felt like he was letting her down by not being in there. But they both did well at separation!

We got into the room and lucky for us they had a TV in the corner, and NOGGIN has pretty good cartoons on at 9:30! We got to watch Wonder Pets during her ultrasound!! They took just under 100 pictures. She had to lay on her back, side, and tummy for these. After she was done she had the radiologist take a quick look and he decided he wanted another view of something so we had about 15 minutes of more pictures, for a total of around 120 maybe?? At that time I was told he didn't see anything out of the ordinary, but that he hadn't made the official report or finalized the entire scan. We headed up to the oncology department where everyone welcomed her with big smiles and ooh's and ahh's about how big and cute she is!

Charli had a great time in the clinic. It made me sad. I was sad because I realized this was the first and only time she has been in that room and actually felt good...either from sedation or treatment. And, I felt guilty because I knew that deep down all of those parents were thinking "get your healthy kid out of here" because two years ago I remember kind of feeling the same way! Not that I was ever jealous of those who had healthy kids...just jealous FOR Charli!! So, I understood. Either way, she had a great time with the toys and other kids!! We saw her doctor who thought she looked great, and it was a just a great experience overall!! We headed down to eat dinner before heading out! Charli's big prize for doing such a great job was nothing other than a RING POP! After eating dinner she got to enjoy it! We then went to the baby store to stock up on some things we need for baby#2. As another prize she got to pick a new dora movie for the car, which she watched the entire way home, not napping!! So, she was up from 6:30 - 8:30 that day!!



happiness is...a ring pop!!

posing for pictures while waiting for the 2nd ultrasound to start!


she looks excited and happy for not eating!


she was so brave!! she couldn't see the TV when she laid like this, and she was still a champion!



this picture was "for grandma" so they could see how brave she was being!




thank God for "Wonder Pet, Wonder Pets, we're on our way..."


one of her new things, resting her head on her hands for pictures!





cute duo!



high-five dude! Charli had a friend over to play one night last week!



Where is Charli?! Her daddy covered her in cards one night before bed! Why did he think to do that?!!



When mom is gone they tend to do things their very own unique way!! It makes total sense to eat an icepop with gloves on!
We were cautiously optimistic as we waited for the official results. I was hoping to get a call yet Friday, but we didn't. Which, we totally understand. The further we get away from treatment the less of a "priority" it is, so to speak. That is not to say we feel like we are not #1 when we are there, because we are. We just know from being on the other side of things that the kids who are in active treatment need to take TOP priority at that time. Anyway...it made for a little bit longer of a weekend with that on our minds, even though we knew it was okay!
Monday, however, I started to get a little nervous. I found out about a friend who has a little girl with the same story as Charli, same age, etc who had scans last week too. Well....her scans at the 2-year mark did note a spot on the lung. I think we tend to get in a comfort zone where we have been perfect for so long we feel that we are out of the woods, so that reality check was a huge downer for me. That night I also watched a special on St. Jude where a girl who had NB had great scans for 7 years, and then had a relapse. Ahhh, like I said I have talked myself into the fact that we are DONE with this, and at the same time in the back of my mind I know it can all change in a second.
HOWEVER, Tuesday morning I got the call apologizing for taking so long to call and giving us the OFFICIAL report of Charli's scans!!!!
So now we go about our lives for the next six months and do it all again!!!!
Thanks for checking in on us! We are expecting to get a snow storm tonight, but hope to make it to Lindsay tomorrow to have Amanda's baby shower!! Hope it all works out with NO problems!!! Have a GREAT week everyone!!

Tuesday, March 31, 2009

update on the update!

Just wanted to let everyone know that we received the official call from Children's today confirming that Charli's scans were good!!

We knew that they were, but we still needed to hear it from our doctor! Thanks for keeping Charil in your prayers as we waited for the results!

Saturday, March 28, 2009

update

I am sorry for not posting this sooner...and for keeping this so short tonight! I hope to have more time to update tomorrow night or Monday at the latest!

Charli was an absolute champion for her scans. She did FAR better than we could have asked for.

I was told that the radiologist did not see anything abnormal at the time of the ultrasound, but that was from the tech who performed the scan. We have not received the official call from Charli's oncologist, which would have been nice to have before hitting the pillow last night!! But, we trust it is okay all the same, there is just something about having our doctor tell us she is "good to go" officially!!

Thanks for checking in on us - and again I am sorry for not posting sooner!! :-)

Thursday, March 26, 2009

prayer request

Tomorrow morning our family will travel to Omaha for Charli's follow-up scans. These are the first set of scans we have done at the 6-month mark...meaning up until now we have always checked her at 3-months.

Having said that I have all the faith in the world that her scans will come back GREAT!! But, there is still *that* possibility.

Another change for us is that this will be an ultrasound and not a CT or MRI. This means that Charli's little body will not be exposed to as much radiation from the tests, which is nice considering how much she has already been exposed too. This is a good sign, showing us that we are moving forward...

And finally, the last change is that Charli is not scheduled to be sedated for this tests. This will be her first test that she will have to lay still for. This could be a major challenge for many reasons!!! We will take Dora along, and we will take videos along -- so I hope we can keep her interested in those things and not what the doctors are doing. But, do you think it is really going to happen?!! There will be new people in the room with funny looking machines touching her tummy - hmmm?!! Please say extra prayers in this department!! If all else fails, we will just need to reschedule her scans and give her a little something extra to help her fall asleep for a bit. The fact that they are willing to try it without anything is another sign that she is growing up!!

I know I haven't said this in a long time, so I want to make sure to say it now. Thank you all so much for the love and support you give my family. You will never know what it means to us to know that you are all out there still loving and caring for Charli...and soon the new baby too! Sometimes it feels like a life time ago that we were actually living the nightmare, and sometimes it even feels like it was all a dream - or just a book I read. And other times I am reminded that it is all too real! Either way...the support we have found in you, the faithful followers, has been amazing. You have certainly made me a better parent and friend - and for that I will be forever thankful.

Wednesday, March 18, 2009

new teeth

So...

Charli is finally getting her two year molars in (she has always been slow with her teeth!) and I noticed them while we were getting ready this morning. We talked about them a little and took off for Lynn's...

We were driving and I asked her if she was getting teeth on the top or just her bottom. I thought she might try to feel for herself so I looked in the rear-view mirror to watch her do this, thought it would be cute!! She gave me the funniest look, as if to say "mom, you are such a dork!!" and she said, as serious as can be...
"no mom!! I don't have teeth on my bottom!"

DUH!!! What a silly question to ask a 2 1/2 year old!!!! :-) These are the moments we live for!!

Miss America to shave her head!!!!

I got this in an email from a mom I met while our kids where in treatment. Mackenzie is the same age as Charli...and a little dolly! You can visit her site which is linked to the right. Please pass this story on, either via your blog, email, text, phone calls, whatever!! It would be great for her to get a lot of recognition and respect for what she is doing, she is very brave!! My own daughter went through this, and I don't have the courage to shave my head!!!!

This morning I watched Good Morning America with my daughter Mackenzie preparing her for her CT and MIBG injection she had scheduled later this morning and Miss America was being interviewed regarding her shaving her head, she said she was doing this for Pediatric Cancer Awareness and raising funds for research, she is having her head shaved April 11th and ABC Good Morning America is going air it. Our Miss America got approval from the Pagent committee to do this and she said she was involved in helping our cancer children. She mentioned how one little girl going thru treatment told her all she wanted for Christmas was hair and how she got picked on in school being called a boy, Miss America said she was going to show up at her school wearing a wig and then showing her classmates her bald head. How amazing Miss America is!

Sunday, March 15, 2009

celebration

Today was our two-year celebration!!! We really enjoyed our day, and tonight when we put Charli in to bed we hugged her tighter, kissed her more, and told her we loved her many extra times!

Saturday Chad and I took a day trip to Lincoln for a wedding while Charli got to spend the day with Aunt Amanda and Uncle Brad! I think they had a great time together, and got to do many fun things! Although, I think she was not a good play date for Uncle Brad! Sometimes I think that Chad picks on her so much that she tends to not like to play with boys all together!! (not all bad I guess!! ha)

Today we took a nice walk around our neighborhood that I thought would tucker Charli out, but didn't!! We came home, ate a good snack, and played outside! She loved to be on the swing set her dad built last year, and enjoyed running around the yard. We wish we had a bigger yard for her to run around in!!

Tonight we had our pizza-party. Charli was so excited to go to the "pizza party" and she talked about it all day! Chad tried to get her to understand or at least try to grasp why we were celebrating, but she thought it was because she got to see her cousin Colton and "his brothers" she said!! As you will see, they both got to enjoy RING POPS courtesy of Grandpa Preister!

I think we had 32 people at the party tonight!! It was a great time to thank everyone for all the support they have given us over the past two years! Most of everyone who made it are people we get to see fairly often, but there are a few that we don't get to see often at all...and it was nice to have everyone together! It was just a nice-nice time I think - I hope they thought so to!

So...we are ending this day/weekend on a high note! I heard someone say "she sure is doing much better than she was two years ago tonight". I can remember the pj's she was wearing that night and the color of bottle we tried to feed her with -- among all the memories I have of the past two years, my favorite was the smile she gave me tonight when she said "mom, come on..." as she was carrying her stuff out of the party room at Pizza Hut!! She has grown up and out of being that "sick little girl with cancer". She is a miracle, a blessing, and all of the things I could ever want wrapped up into 29 lbs of LOVE! I can not even put into words the pride and abundance of love I am feeling tonight...so I will just sign off!!

Thanks to those who were able to share a few memories, it is fun to see her life through the eyes of others :-)







climbing the steps to her slide!

"say cheese mommy"

wow - she was not expecting Chad to sweep her away!!


racing with dad!



before her party!

the cute ice cream cake Aunt Amanda and Uncle Brad brought!!





showing grandpa her tongue after having her purple RINGPOP!






I can't remember what color Colton had...blue maybe?!!




I just love this pictures, pretty green eyes!!




ready to go!!










Wednesday, March 11, 2009

730

We are coming up on 730...

730 days ago Charli was diagnosed with cancer.
730 days ago our lives were changed forever.
730 days ago we became members to a crappy club.
730 days ago we vowed to save our daughters life.
730 days ago Charli was diagnosed with cancer.

I have been really torn on how I wanted to handle the upcoming weekend. Part of me wants to sulk and cry, and kind of relive the emotions I should have felt two years ago. Part of me wants to ignore it and move on, because look where we are now. And, part of me really doesn't know how to act, to be honest!!

Our lives have changed and turned so much in the past two years. They haven't changed for the worse by any means, but I sure never expected our lives to be where they are now...731 days ago.

I want to recap some of the high and low lights of the past two years:
Charli had numerous surgeries
Charli spent many nights in the hospital
I celebrated my birthday next to Charli while she got chemo
Charli lost her hair
Charli grew her hair back
I watched Charli roll-over for the first time
We saw Charli crawl for the first time
We saw Charli take her first steps
Charli received chemotherapy
Charli beat cancer
Charli's Angels rallied around all kids with cancer...
Charli's Angels raised over $25,000 for kids/adults fighting cancer
Charli has inspired numerous friends, family members, and strangers
We have seen kids die at the hands of this disease
We have seen kids triumph over this disease
Clinical trials have failed
Clinical trials have succeeded
We have educated people about kids with cancer
We have been told that WE were killing our daughter with the course of action we were taking
We trusted our doctors
We doubted our doctors
We made friends through treatment
We lost friends through treatment
We found solid rocks of support in our lives, because of cancer
We love more
We love harder
We love deeper
Little things are just little things...they aren't cancer, or a relapse
Charli's considered to be NED
Charli went back to daycare, and Chad and I back to "normal" routines
Charli celebrated her first birthday!
Charli celebrated her second birthday!
Charli celebrated 1 year post diagnosis...
Charli is celebrating 2 years post diagnosis...

My list could go on and on as I recap the past two years. I am amazed by how our lives have changed, what I thought was important three years ago couldn't matter less today!

I am so thankful to have Charli in my life, and I refuse to let the little things be taken for granted. Someone asked me how it makes me feel, to come upon this weekend - and like I said before I don't really know how to feel (aside from emotional!!). But, I know that one thing I feel is excited. If we are at 2 years, we are almost half-way to 5 years...which is a magical spot for kids like Charli -- so I am excited about that! I know the day that Charli goes to Kindergarten will be bittersweet to see my baby go to school, yet a day to celebrate because many don't get to enjoy that experience with their children. Far to many miss out on the heartbreak of sending their babies to school...

I imagine this post is getting to long, so I will wrap it up -God knows I could go on, and on, and on about this!!

I would like to thank all of you for being here for our family the past 730 days and counting. We couldn't have done it without you, and for that we are always thankful. To celebrate the life that Charli has lived and the joy she has brought so many of us...if you have a minute, please write a memory or story you remember from the past 730 days of knowing and following Charli! I know she has changed lives in this world and I would love to know how!!

We are having a celebration party for Charli this weekend so I will post pictures next week!!!!
EXPECTING MIRACLES!!!!!!!!!!!!!!!

Dear Cancer Patient

This is a great way to look at the fight against cancer.

Some of us Relay, some of us are Candle Lighters...some of us do nothing because we feel we can never do enough...
whatever YOU do, know that YOU are saving lives...
YOU are changing the world to children who will never suffer because of the advances that are made with your help...
YOU are the hero.