Tuesday, April 29, 2008

A week of fun and good days!

Ok, so here are some random pictures.

Lukas looking great!
My sweet little fighter!
John, here are your new ad campaigns!
Lukas loved your new creation! Cheesy bread pizza. (Pizzaiolo's pizza! Delicous)

We had to by the Baby Mederma to put on Lukas scar. It was $20 for .7oz of the stuff!!! This is Lukas after Theron put $15 dollars worth on his head!

So this was one day that Theron was supposed to be taking a nap. His reward for going potty is stickers. The little sneak found a package of Pirates stickers and pulled off all 100 of them and put them all over himself and me. I was laughing to hard to be mad at him!

Charles turned 20 on April 29th. Crazy! He wanted to go to the park before his birthday dinner at Trail Dust and the boys and I were completely fine with that! Suzie and Will came to the park too. Theron loves Suzie (Charles feels a little threatened by this). Any time we say we are going to see Charles, he says "And Suzie!!". So cute! Lukas started moving in on her during dinner... Sorry Charles, my boys are just that cute!

Saturday, April 26, 2008

No more tears in Heaven...

Our little friend John Eric (carepages: johnericbartels) is losing his fight with Neuroblastoma. He made it all the way through his first rounds of treatment (the high risk protocol w/transplant) only to find his cancer had come back in the primary tumor spot. His parents have decided that after trying their last options of experimental chemo and that not working and causing more pain, that they are choosing quality of quantity of life. They are meeting with hospice today and also setting up... I can't even say it.... They are making decisions today that no parent should ever have to make for their child. The children should be the ones planning this for their parents that have lived long and happy lives.

I have never met John Eric or his family, but I'm connected to them now through this stupid, nasty, hateful diseas we call Neuroblastoma. I hate it. I'm heartbroken for the Bartel family. It hurts to have to read that.

I know these aren't the posts you all want to read, but if you can please go to John Eric's carepage and leave his family words of encouragement, or at least pray for peace, understanding and soon comfort.

Thursday, April 24, 2008

1st Annual NB Walk...a SUCCESS!!!!

The first walk, put together by some super loving people and it was HUGE success in my opinion!

They were able to raise just over TWENTY THOUSAND DOLLARS!!!!! $20,000!!!! There were about 250 people there and 18 NB families!

I'm just amazed at how well this first year went and I'm super excited to see how much more we can accomplish next year!

Here's us and our reason to walk!

Here's our little fam having a great time and supporting a GREAT cause!

They had orange wedges out for snacks and by the time we got done walking the 3 miles, Theron was starving! He and Coen pretty much walked the whole way! I was so proud of them!

Monday, April 21, 2008

Don't Cry, BEEEE HAPPY!!!

Ok, so I've had some, understandably, sad, depressing posts, so I thought today I should post something HAPPY!!!!!!

Lukas is alive, Kurt's job is going well, I'm in a good mood today, Theron is happily watching Cars.....

Life goes on, and it can be happy if we let it.

:) Here are some pics to put a smile on your face!

I LOVE this smile!

See food?

Theron's Monkey Face

Chocolate, one of the only things we can get Lukas to eat...

Theron LOVES to make Lukas happy!


Lukas loves "Bizzy" his music therapist.

Saturday, April 12, 2008

Cancer Sucks, bad

Social isolation, roller coaster emotions, decisions, decisions without enough information, sleepless nights, horrible-terrible thoughts, upset stomachs....

There really isn't anything good about it. Sam's family has gotten bad news about his latest CT scans... The tumor hasn't shrunk since last time and it has actually split in two places, so he faces a very delicate and dangerous surgery. His parents are forced to decide on the surgeon from here, Houston or NY.

We shouldn't have to face decisions like this. We shouldn't have to be told that the tumor isn't responding to treatment and needs to be removed. We shouldn't have to face the "last ditch effort" surgery. Lukas was lucky with his results. Now Sam and his parents need our prayers. They are now in the shoes Kurt and I were in a few weeks back.

My heart hurts so badly for them, I know the pain and nausea we felt and I can't fix it. I can't help them.

We go through this and gain a whole new family. These people, and these sweet kids become so close to us, we are bonded in a way that nothing could ever break and I just want to fix it for them as badly as I want to fix it for Lukas. I told my mom a few weeks ago that I now have a sickening sense of understanding and an empathy I would never wish on anyone else. It comes from having to personally deal with my baby being sick with a cancer that can't be cured (as of yet). We can treat it, we can even make it go away for a while, sometimes for a long while, but in the process we destroy other functions. Our babies are forced to grow up faster than they should. I only halfway joke when I say Theron is 2 going on 20. Our kids, not only the sick ones, loose a piece of their childhood. They loose some of their confidence and feeling of security as they deal with this. I can't even say the word without shuddering.

Cancer. It's taken Lukas sight, it's taken some babies lives. It's relentless. It takes and takes and takes. It's taken Theron's sense of security and it's taken some of my hope, some of my dreams for Lukas, some of my heart.

The Flemings need our hope and faith and prayers and love and support now more than ever as they have to face this unforgiving beast face to face. They have to make the decision to take Sam into surgery and leave Ben behind for however long it takes for Sam to recover. Linda has to leave one baby behind once again as I know all to well. She'll be seperated from Roger again, from her home and sense of comfort. This road is all to familiar to me, to the other families facing NB. It's a lonely road and a long, dark one. There isn't much more than a flicker of light at the end for some of us, and for others, it's only darkness. It's a true test of faith, of our ability to endure to the end, to be able to let go and give it all up to our Heavenly Father. That's the only way we get by each day, the only way we can enjoy the good days and try and endure the bad. We are given miracles, no matter how small or large, but just enough to remind us that we really aren't alone. We are given other families to bond with, to cry with and laugh with, to turn to when we are at our lowest and need that hand to pull us up.

There is nothing good about cancer, but there is something marvelous and wonderful in our babies, they are true blessings, sent to us from Heaven. Maybe we don't get to have them for long, but it sure does make the time we have with them more sweet.

Tuesday, April 8, 2008

I want so badly for him to see again.

Dr. Hunt said the most we can hope for now is Lukas seeing shapes and being able to distinguish between light and dark.

Every now and then I catch him looking at things though, so is he seeing more or just the outline of what he's fixed on? I guess we won't know until he can tell us, but when he seems to be looking at me, my heart jumps inside and I don't want that moment to end. I want him to see me, and all my imperfections. I want him to see his daddy and Theron and his family. I want so badly for him to see his nurses and doctors that have fallen in love with him and helped make him better.

Dr. Hunt told me miracles do happen, he's seen them, but right now, medically, Lukas won't have normal vision. Just light, dark and maybe shapes.

That's so hard to hear, I cried a little on the way home, but I am too tired and emotionally drained that my tear factory has gone out of business. But, I guess vision loss is much better than baby loss.

I mean, we just put him through major brain surgery for the chance for his optic nerves to regenerate and get some vision back, is this it? Seriously? This?

I guess I'm just selfish, but I want Lukas to see all the good that this world has to show.

So we should start 3 more days of chemo tomorrow and work on getting rid of the rest of the cancer. I can't even type that word without cringing... ugh...

Sunday, April 6, 2008

Want to sleep, but I can't sleep

So I stay up till midnight or later everynight, only to be back up a couple hours later changing a wet diaper, getting a bottle of "yucky milk" and going back to sleep for another couple hours before my nightly routine starts all over again.

Why stay up so late you might ask? Well, might as well make use of the time I'm going to be awake for anyway....or.... lay in bed and let my thoughts invade for 2-3 hours before I finally cry myself to sleep.

I'm so done. Kurt and I didn't even get to watch Conference this weekend. We were at church, but messing with the boys the whole time. They decided to get cranky and that this weekend of all weekends was the one to really act out on.

I feel bad for Theron. His world is more upside down that I think about, and he's acting out, and he's two and he's trying to potty train, but not really, and he wants to test out his newfound independence, and as a result he is getting into more trouble. So the time we spend with him, we fuss at him to mind, get onto him and he cries. We can't just let him get away with things though, or we'll have a really hard time when this is all over and we get back to some normalcy of life. Right?

I just want the time we do get with him to be happy and productive. And Lukas, yeah, he knows how to through MAJOR fits now. The high pitched squeal, the flailing of arms and legs, the super-tantrums... Jeeze, we are so very much in trouble later on...

Down the road we'll get to hear: "Hey your son is NED (No evidence of disease), but man do you have issues to deal with now! Just look at the attitude problems we created for you!!! Have fun, see you in a couple months for follow up!"

Oh, joy.

Friday, April 4, 2008

Old Faithful

Oh, my poor car! My driver door handle is broken, I'm about to have to start opening the window and open the door from the outside! The two back windows are duct taped up, because the motors went out and cost more than the car is worth, and that isn't helping anymore and today it started sputtering, as I was going down the highway with two babies inside...

It's been such a good car and it's been paid off for 5 years now! That's been extremely helpful, but besides it starting to die on us, we have completely outgrown it. I have to wrestle the double stroller into the trunk and back out and that eats up about 10-15 minutes out of my day as the boys are whining to get out of the car. I have to have the seats scooted up to an uncomfortable position just to give them leg room and forget about taking anyone anywhere. Poor Charles is like a 10 foot tall bean pole shoved in a 3'x3' box! His knees are in his mouth when he goes anywhere with me, and that's pretty often.

This is my next "dream" car...

I just have to sell my car for $18000 and I'm pretty sure that isn't going to happen.

This will be me in a very short while with a little boy on each hip....

Anyone have a skateboard I can borrow?

Man, if it's not one thing it's another. Sheesh.

Thursday, April 3, 2008

Still lurking.....

Yeah, there are still some spots lighting up on the MIBG scan, so we'll do a couple more rounds of chemo and then do some more scans to see what is going on.

I'm not suprised, actually I am kind of relieved (I know it sounds bad to say) that we aren't just stopping cold turkey on the treatments. I think I personally will feel like we have some "closure" if we actually do at least one more round of chemo and we'll probably do two.

I guess from y'alls perspective, you might think I'm nuts to say that I'm glad we are going to do more chemo. But, like my grandma said tonight, radiation kills what we can see and chemo kills what we can't see, so, take it how you will but I have a small sense of relief.

Oh, and go to my other blog:

exciting stuff underway!!!!

Tuesday, April 1, 2008

Neuroblastoma Article in the Ft. Worth Star Telegram!!

Making progress. It was a FRONT PAGE article that continued for a whole column on page 9. That's quite a story! Here's the link:


It's a good read.

1st Annual Neuroblastoma Walk for a cure
Please join us for the 1st Annual Neuroblastoma Walk for a Cure!

1st Annual Neuroblastoma Walk for a Cure
In memory of Michael Mancuso an in honor of Kyla Moore

Flyer and Entry Form

Time and Place
Date: Saturday, April 19, 2008
Time: 9:00am - 11:00am
Location: Acme Brick Headquarters
Street: 3101 Bryant Irvin Road South
City/Town: Fort Worth, TX

Contact Info
Phone: (817)347-7038
Description: 3 mile walk to raise awareness and funds for the new Neuroblastoma Program at Cook Children's Medical Center.