Monday, April 30, 2007
The day started with people gathering in Humphrey to start the Poker Run. I didn’t know how many cars, trucks, and bikes to expect…but my expectations were far exceeded! They registered over 350 poker tickets. The stops were in Newman Grove, Albion, Genoa, Monroe and Columbus. For those of you who are familiar with those towns…imagine 300 motorcycles lined up on the streets! It was an amazing site to see. Chad and I did not go on the run, but we did go to the starting point to see them all gathered, it was unreal!
As the riders finished they rolled into the Legion in Columbus. Some started to arrive as early as 3:00! It was just amazing, the entire day. People came to eat, be entertained, visit, and show support for Charli – and they did it in style! There were raffles throughout the night, and the evening finished with an auction of several donated prizes…ranging from a stuffed John Deere dog that went for $50 to a signed volleyball (by the 2006 National Championship Volleyball Team, the Nebraska Huskers!) for over $600.
I did my best to raise awareness to neuroblastoma and childhood cancer. I know that I could have done so much better…but did not expect people to just sit and listen as well as they did. I thought I would be kind of “background noise” and wanted to keep it brief. I think before I got my second sentence out the room was totally silent. I started to break down a few times, but knew I had to finish it. What I had to say and what I needed to share was too important to back out of. I was able to share with everyone a little background of childhood cancer and some information about neuroblastoma. I was also able to let people know a little about what Charli did to show us that she was sick. I gave thanks to the many people who helped make the night possible, probably leaving out twice as many people as I thanked. As I left the stage I lost it. I was looking to walk straight back to the back of the room and find a place to just be alone to gather myself…and there were people everywhere!!! (which was a great thing!). I met my dad in the hallway and just lost it. Somehow my dad just has that effect on me, he can just stand there and be strong and let me fall apart – that’s what daddies are for I guess!! I feel terrible because Chad had to come find me, I should have went straight to him. I just wanted to get away though.
There were some grandparents there of a 4 year old little girl who had NB (neuroblastoma) and she told them to tell Charli that “God will heal you, just like he healed me”. I was so touched.
The entire evening was just exhausting…I couldn’t even lift my head off of the pillow this morning!
I didn’t get any pictures (terrible I KNOW) but I know that others did and have sent or will send them to me so I can post them.
Thank you to all of you who came to the event, planned, organized, and orchestrated the entire day – we will never for get everything that was done for us. Walking around the room and seeing all the familiar faces was touching…walking around the room and seeing all the unfamiliar faces was amazing.
This world is an amazing place and 700 people showed us that last night. Our life will be forever changed because of this single event.
Friday, April 27, 2007
Charli’s counts were pretty good for the most part. Her platelets are still dropping, but the doctor I spoke with today felt that they should reach their lowest point soon and start to rise up again before Tuesday, which is when we get checked again. They are 74,000 today, and need to be above 100,000 for treatment. This doesn’t seem like a lot. However, if they continue to dip – it could postpone treatment. For example, her counts went from 280,000 to 70,000 in one week.
Other than that…nothing to report. Her white and red count look good, which we were expecting but are still thankful for!
Thank you to all of you who have purchased shirts! I am afraid that I have already had to turn some of you down, because we are out of your size. Just so you know, we have adult large –XXXL and youth small available yet. So, there is still a chance to get them on Sunday if you fit into that size bracket! We also have several bracelets that you can pick up yet too!
Charli had a good day today – she got to see her Aunt & Uncle (and baby cousin) from Iowa, and hope to play with them again tomorrow! Oh, and we got to pop into daycare for about 5 minutes to say hi and tell them that we miss them! The kids were playing outside, enjoying this nice weather!
Well, everyone look for new pictures after the weekend!
Thursday, April 26, 2007
My day was going fairly well. It was hard to stay away from Charli all day, but I did! Charli had a good night. She went down for a late evening nap, and ended up staying down for the night. It was the first time she slept in her 'clothes' and not her PJ's! She actually had a pretty good night. I am not sure if it was because she was feeling better, or if it was because when she woke up at 10:00 we decided to feed her...either way :-)
Then, I got home from work and BAM. Chad lead me into her room and pointed down to her bed. There is was...hair, all over. It broke my heart, it was so real. Up until now I have noticed that it has been breaking off and her 'bald' spot is showing again...but I hadn't really accepted the fact that the chemo was showing. Hard to explain, unless you have been there - glad your not!
Just a reminder - the benefit is this weekend. Not sure if I will post before then or not. Thank you to those who have purchased shirts and bracelets...they are going like "hot cakes"!!
*everyone please say a prayer for my niece Macey. She is stuck in the Kearney hospital with phenomena :-( I know that her mom is bummed that they can’t make it back for the benefit, and so are we. But, they are exactly where they need to be!
I promise to post lots of pictures from the benefit!
I got this song in an email from someone who has been helping us through this time. She is always good for a listening ear, a compassionat word of encouragement, and just an understand voice of reason. We appreciate all your help Jennifer!
By Mark Schultz
I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs your help
I've done all that I can do myself
His mother is tired
I'm sure you can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
Can you hear me?
Am I getting through tonight?
Can you see him?
Can you make him feel all right?
If you can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
Can you hear me?
Can you see him?
Please don't leave him
He's my son
Tuesday, April 24, 2007
Her red count went up like it should, and her white count went up by the thousands since Saturday. But, her platelets have gone down some. They are not low enough to need a transfusion at this point, but they have just consistently gone down over the last week. We hope by Friday (our next check) they have started to rise, so we can move on to round number three!
Charli seems to be a little more tired this week. One of the symptoms of having a low red count is tiredness and light skin, both of which came after the fact. I pray that this is not the reaction she has from treatment from now on.
Below are two pictures of the shirts that were made for Charli’s benefit. If you are interested in one they are $8.00, just let me know! We have youth and adult sizes. We also have bracelets that were made for her that say “live with purpose” they are cute!
I have also found so many other stories that I would love to share about other neuroblastoma (NB) fighters, sadly there just isn't time to tell them all. However, I would like to pass along some wondeful words I have heard from them..
Our goal is to not just survive this horrible disease, but to become better people because of it. Please pray for us while we take this journey.
"I WANT TO LEAVE MY MARK ON THIS WORLD. I WILL NOT ALLOW IT TO LEAVE ITS MARK ON ME."
And lastly, a few more pictures of Charli - just because I can't help myself :-)
Sunday, April 22, 2007
Charli is getting two antibiotics to combat 99% of what could possibly come back from the culture (which we hope comes back negative). I know how some of you feel about giving antibiotics when not necessarily needed…and I don’t want to hear it! The benefit of using antibiotics far out ways the risk in these types of situations.
Later this afternoon Charli will receive her first blood transfusion. We have to wait for the antibiotics to finish in about an hour, and wait for the blood bank to send the product. The transfusion itself will last about two hours I believe. This transfusion is for red blood cells only, not platelets or plasma.
She didn’t sleep well last night, but she did have a nice nap this morning, and is trying to nap again…so we hope for a good day!
Hello to all the new readers that have visited in the past day or two, from the neuroblastoma (NB) site and thank you for your support. I realize and respect that you have all walked in our shoes yourself.
THIS JUST IN….GREAT NEWS. Once the transfusion is complete we will be able to come home. WHOOOP-WHOOOP!!
Saturday, April 21, 2007
They are doing blood work to see if there is an infection. Her throat is red, but we don't know if that is a cause or a result of this. It sounds like we will be here until atleast Monday, when the results are back. Her counts have to be above 100 before she can leave, no fever for 48 hours, and negative blood cultures. We were goone for less than one week before returning!
We knew that this trip would happen at some point, but I wasn't expecting it to be now. I wonder what I (or we) exposed her to that we shouldn't have that could have gotten her sick. In the begining I thought no matter what choice I made it was going to be the wrong one (when to take her to childrens vs. giving columbus another try) - that is how I felt again today. Did I wait 30 minutes to see if her temp dropped, and possibly regret the wait. Or take her down and hope it was a wasted trip? Ugh, being a mom definatly needs to come with some training. How does everyone else seem to figure it out?
We hope that by morning her counts will be up to 100, or more...and that we just need to wait on the negatve cultures. I don't know what caused the fever, but as long as it goes away and her numbers are up - that is all I care about!!
I will try to post quick little updates when we learn things this weekend. Hope all is well for everyone :-)
Friday, April 20, 2007
Just some cute pictures of Charli…are there any other kind?!!
I am not sure if I am happy or sad, but whatevr I am...I AM CUTE!
I think that in the beginning of all of this, it was a little easier to accept. I don't think I really realized (and probably still don't) the "big picture", but slowly I am starting to see the reality of it all. I am not sure if today is just an 'off day' or what, but I am just seeing things in a different light today I guess!
Charli's counts have "hit bottom" according to the nurse, that made me cry. I don't know why...I knew it would happen, and we were just waiting. The good news, she can only go up - right!? It just made me realize how truly long the road ahead may be.
You go through pregnancy thinking that if you can make it past 12 weeks you are fine. That is not true, terrible things can happen at anytime - sadly I have seen this to be true. THEN, you think, once you have the baby and you leave the hospital that things are going to be fine. WRONG. Obviously, no one really believes that - because bad things can happen anytime (just like good things can happen at any time too!). But at least I was under the impression that having normal well-baby checks was enough. I am not trying to scare anyone or anything like that…just trying to get some thoughts out, so please don’t take any of this wrong. You just never expect to have this happen to you. Famous words, right?
Sometimes I think that because Charli acts like she feels so good all the time that it is easier to accept that she is ‘sick’. But then, like today, I see her lying so peacefully and perfect in her crib just like a “normal” baby…and it breaks my heart.
Someone told me today “you don’t always have to be tough Brenda.” But if not ‘tough’, then what? Sad, mad, angry, hurt, jealous, envious, hopeless, faithful? I am all of those things too, trust me.
Most of the time when people tell me how amazing they think I am doing, or how well I am holding up – I feel guilty…because I am not always like that, although I try to be. The way I look at it is this – at this point in our life we have few options on how we can handle this. We can wonder why (which I do), and have it take over my life – and change our family in a way that we can never undo. Or, I can TRY to look on the bright side of things. Either way, one day Charli is going to grow up and want to be a normal kid…only one of those options will allow us to go on and be “normal”. To me, the choice seems easy.
Having said that, one thing I need to work on is just accepting this and embracing it – and not try to write it off. So many times I find myself telling people, “it could be worse, we are lucky”. And, I TRULY believe this too. However, we still have a problem on our hands…no matter how big or small others may think it is. But, this is our problem to defeat…and we are working on it – one day at a time.
Thursday, April 19, 2007
Three things in life that, once gone, never come back -
Three things in life that can destroy a person -
Three things in life that you should never lose-
Three things in life that are most valuable -
2. Family &Friends
Three things in life that are never certain -
Three things that make a person -
3. Hard work
Three things that are truly constant -
Father - Son - Holy Spirit
I ask the Lord to bless you, as I pray for you today; to guide you and protect you, as you go along your way. God's love is always with you, God's promises are true. And when you give God all your cares, you know God will see you through. Pass this along to People you want God to Bless - I just did!
~~~***My God Reigns***~~~
Don't Pity Me
I can tell when you're doing it. I see the look on your face, and I can tell.People sympathize, they feel pain with us. Often, they have been through this type of experience--dealing with cancer face-to-face, hospital waiting rooms and random acts of kindness and unexpected lab results. I truly appreciate that sharing look, the understanding look of those who feel that pain and want to make it better.But the other folks. The ones who are secretly thinking--I'm so glad I'm not you. It's no secret. We, the people you pity, can see it in your eyes. I know you hang up the phone and tell someone that I'm 'holding up remarkably well', or that you 'don't know how she does it'.Guess what? I don't want your pity, and I don't deserve it.Don't get me wrong, it means a lot to me when someone will listen to my story. I can't tell you how much strength I've received from friends, acquaintances and strangers who are moved by my family's predicament and our fight against it. Your pity doesn't help fight. It doesn't help me keep going on the days I want to stop and scream. All it does is drain me--and I can't afford that.Thanks.
Monday, April 16, 2007
We went to Omaha on Friday for round two Charli’s expect eight treatments. Let me tell you that walking into the cancer clinic for the first time is something I will never forget. You walk into a room where suddenly everyone that surrounds you understands you, and knows what is ahead of you. Although we didn’t see any children Charli’s age we did see them all ages – probably from age 3-16. These kids sit and play video games while they receive their treatments, play jinga while having their vitals taken, etc. It is just what they do. They are not going to let ‘this’ interrupt what they are doing! What a motto for life, huh?!
We waited for just over three hours before being admitted into the hospital side. It is all a waiting game, it could be 30 minutes or it could be all day – each time will be different I imagine.
On a good note – the doctor is pleased by the amount of ‘progress’ Charli is already showing. We are going to push back the MRI until after the 4th cycle. Originally this was planned for sometime in the next two weeks or so. We were able to bring Charli home less than 24 hours after treatment. She is very tired and is not eating the best, but we experienced that last time and are not surprised. But, when she plays she PLAYS! We will continue to give her the same shot we did last time for about 7 days or so. And now we will give her an antibiotic twice a day for the next 9 months or so, this is given orally though – so no shot there! This is to reduce her risk of getting pneumonia.
Let’s see…what else? Charli is cutting her SECOND tooth! You can barely see the second one, but the top one is pretty visible now! Charli likes to stand again! She is gaining strength in her legs and will do it for longer periods of time now! She is also tolerating being up on ‘all fours’ again! When she was feeling better she would rock and try to scoot!
I can’t think of anything else! Oh…Charli tried a few new foods this weekend – watermelon, pudding, and pineapple. AND – she liked all three of them!!
All for now :-)
My first chemo! This was donated by www.headhuggers.org (if any of you have this talen I ask that you consider donating some time and some hats to this organization!)
Daddy is the proud owner of this shot! I could be the poster child for a "BABY DEERE" line!
Just another night hanging out with daddy!!
Thursday, April 12, 2007
What was suppose to be a two-week stay at the hospital turned into eight hard, long grueling months of commuting from work to hospital, overnight stays, cafeteria food, and sleepless nights in a chair by Marcus’ bedside.
I have a child with a tracheotomy and a ventilator. I needed to be able to accept that or I could not bring my son home.
When Marcus came out of surgery, and I saw him for the first time, I did not cry…I looked at him with all the love I had before the trach and I knew that I had made it. I knew that I would be able to go through this with him and we would somehow move on with our lives.
About 8 months later, we were at a doctor’s visit and as we wheeled Marcus into the crowded elevator, a woman next to me gasped, “Oh, what’s wrong with him?” as she stared at my son.
Puzzled I looked at my child, I did not notice anything out of the ordinary, no hair was out of place and I did not see anything oozing out of his nose, he was asleep.
“What’s wrong? Nothing is wrong, he’s asleep.”
I realized then that I was exactly where I needed to be.
Brigitte C. Ramirez
but sometimes life ain't good
And when I pray it doesn't always turn out like I think it should
But I do it anyway, I do it anyway
Monday, April 09, 2007
trying to spit on grandpa!!!
I just woke up, can you tell!!?
Grandma and I looking at birds!
This is how I started...
...and this is how I finished!
The Easter bunny brought this hat!
My hat is silly!!
My hat is too big!!!!
I LOVE to dig in my toy box and get my OWN toys!
This dress tastes funny!
Is it time to open the rest daddy?!
Happy Easter to everyone! I didn't think that it would bother me to stay home on a holiday, but it did :-(. Almost every year, every holiday we go to the farm - but not this one. AND, after getting Charli in her dress and shoes, it broke my heart that we would not be able to share her with everyone. BUT - Charli didnt mind! She played and played, and played all day!!!
Saturday, April 07, 2007
Wednesday, April 04, 2007
We had no idea how many people were looking here, until we started getting phone calls, cards, and emails from total strangers! It is amazing the amount of people that Charli has praying for her. I believe that is why she has been doing so well so far. So, ‘thank you’ – to all of you!
Not a lot to update, so I imagine that is good. Charli is continuing to have more good days than bad days, so we are very happy about that! We are scheduled to go back for Round 2 of chemo April 13th (yes it is FRIDAY THE 13th!)
I don’t think I have mentioned this before on here, so I will throw it out there now! Charli’s grandma and grandpa Preister are heading up a benefit for her, and to raise awareness for childhood cancer. ISN’T THAT AMAZING! I know they will get help from the other grandparents as well as aunts, uncles, cousins, friends, etc…we are so blessed with helpful people. This will take place on April 29th, if you would like more information please let me know!! It sounds like it will be fun, Jody has done a great job planning and putting this together. We are grateful. The event is going to involve motorcycles, cars, trucks, food, drink, and prizes! Sounds like a great time, right?!!!
Again – thank you for all of your well wishes, we continue to see the blessings in our life each day as something or someone touches our hearts. We can only promise to pass along all of this goodwill.
Charli is sleeping beautifully and peacefully in her bed now, so I better end this before she decides it is time to play again!! HOW FUN IS BEING A MOM?!!!!!!!!!!!!
Grandma Preister DREW this picture of me!! She called it "charli tickeled pink"!!!!
If you have gotten this far, I would like you to post ATLEAST one thing that you are thankful for!! I will start!! I am thankful for Charli's health, friends, family, and the kindness of strangers.