Saturday, March 29, 2008

A Good Day

Started out rough, no sleep over the last week and a half hasn't been kind to me and getting Theron and Lukas back on a schedule doesn't happen overnight anymore. So Kurt and I didn't get any sleep but we managed to get cleaned up and out the door by noon to head over to Jake and Becky's house to play games and raise money for Relay... Raised 185.50 by the way!!!!

Lukas played and played and played and crashed for an hour and then got up and played and played and played some more. Lukas discovered a new and now favorite toy at the hospital and Ethan just happend to have one too! That literally kept Lukas busy for HOURS!!!!!! We are buying one ASAP!!!

Theron and Ethan pretty much spent all day outside. Theron was barefoot. Of course. If Theron could live outside and be barefoot all day too, he'd be the happiest kid on the planet. He has been pretty whiny and difficult lately, but I understand why, so that's something on top of no sleep that has been getting to Kurt and I the last couple of days.

We've got a lot of work to do with the boys, but all in all they are such good sports and are really well behaved for their ages.

It was a really good day.

Wednesday, March 26, 2008

Are we almost done?

We might just be, so why do I feel so much anxiety about it? Shouldn't I be excited, exhuberant that we are almost done?

I guess lack of sleep and the unknown really are my enemies. The last couple of nights have been hard on Lukas and in turn hard on me. Last night being the worst. He was so anxious and didn't want to be put down in his crib. I would rock him and he would be dead asleep and as soon as his head hit the pillow in his crib he was awake and screaming and clawing to get back in my arms. I know what you are thinking, just a spoiled baby and doesn't like to be put down since he's been held more than not these last 4 months.....

No, that wasn't it. It was like he was terrified of laying in that bed. I just can't even begin to put myself in his position. Can't see so he doesn't know when someone is coming in to poke or prod him... Too many times he's gone to sleep only to wake up with a new scar or more tubes coming out of his body... And even more often than that, he's has countless needle and dressing changes, while he is awake. He continues to amaze me at how well he handles all of this, but last night it was like he was just giving up and dind't want to fight anymore. He just wanted to be held, just wanted to be close to me and didn't want me to let him go. It made my heart hurt so bad to see him that anxious and worn out and scared. I'm supposed to be able to make him feel better but last night I just couldn't.

After hours and hours of rocking him and trying to get him to sleep in his crib, I couldn't keep my eyes open, so Laura came in and took over. She came in on her first shift of the week and told the managers she was going to be Lukas' nurse! We are so lucky to have such great and super loving nurses that love Lukas like he was their own. And I'm blessed that when I can't help him they are there to fill in the gap and help him their way.

I absolutely love our nurses and care partners, all the doctors and even the nutrition staff that know exactly what Lukas likes to eat and can just send meals up without having to ask what to make him. That's quality care. Actually above and beyond quality care. That's just pure love for Lukas to care that much for him.

And not to leave out Theron, he makes Lukas' face light up when he comes in the room. Theron came in today as Amy was unhooking the line so I had to hold Lukas arms down. Of course he was fussing and Theron came in, first thing said "Hi bubba!!! Oh, it's ok bubba, don't cry, it's ok. You're ok bubba." He's two and yet he's so understanding and loving in such a mature way. He amazes me too.

Thursday, March 20, 2008

No Convincing Evidence of Metastatic Tumor

Official pathology report!!!!!

There are some cells that can't be adequately identified, so we will probably finish up with some chemo to "clean up". Dr. Granger brought the official pathology report in just a little bit ago!

She is going to review his case, see what all the past scans showed, what doses of chemo he has had and put together his last protocol!

Wonderful! Lukas absolutely AMAZES me!!!

Sunday, March 16, 2008

Thankful and Happy

Most of you might already know our news. Lukas is a miracle baby. One that didn't read the rule book. He does everything his own way. He was supposed to be intubated for at least the first day and maybe longer. He got to ICU and pulled the tube out and was up and going. Granted he was super drugged up, but still... The surgery only took about 6 hours when they were expecting 10 or more....

My sweet little Lukas. He has a big cut across the top of his head, but he is ALIVE and doing great! This last week has been so emotional. So many worries and unknowns, so many horrible thoughts and concerns. How do we handle it if Lukas doesn't make it, how do we explain that to Theron?

But you know what? From his very first baby blessing, Heavenly Father has said time and time again that Lukas has an important work to do. I don't know what that is, but I think he is definitely doing it right now and he's just getting started.

I am so very, very thankful for everyone that reads this blog, for everyone that has said prayers and continues to say them for Lukas, I'm thankful for my friends and family. For everyone that came to sit for the long hours while Lukas was in surgery. For the food that was brought up, the snacks that were given to us, the hugs and distractions. I'm extremely thankful for those that have taken care of Theron through all of this, giving him as much normalcy as possible. I'm thankful for all the long nights you have spent with us and for letting me cry and not telling me "it will be ok" but just letting me get it all out. I'm really thankful for the washer and dryer! I love them, it's nice to be able to do a LOT of laundry in a few loads. I'm thankful for everyone that has offered to do something even though there hasn't been much to do. I continue to see families struggling with hardly, if not any, family around. I can't imagine doing this on our own. We fought moving back to Texas, but we did it because we knew it was where we needed to be and here we are. We have such a great and loving Heavenly Father. He has such big plans for us and I'm learning, sometimes very slowly, that he knows me and my heart and my needs and I have never been left wanting anything. I have everything I could ever need right now. The best husband in the world, the two most beautiful baby boys and family and friends that will drop everything and bend over backwards to help out. Life doesn't get much better than this.

I love all of you and I know that you will all be rewarded tenfold for everything you do for us!

Wednesday, March 12, 2008

And the bomb has dropped.....

After 3 months of all the doctors and surgeons stressing that surgery was (emphasis added) THE LAST OPTION, Lukas now has his surgery scheduled for Friday at noon. Kind of scary when the tumor is a milimeter bigger. To me, it doesn't matter that it's such a small amout, the fact that it's any bigger is horrible! 4 heavy rounds of chemo and 13 very high doses of radiation later and the tumor is bigger.....

So Friday if Kurt and I really feel comfortable (enough) to sign the consents, Lukas will be take back and the Neurosurgeon will go in through the top of his head, down into the frontal lobe and reach the tumor and then the Ear/Nose/Throat-Base of the Skull Surgeon (Very much a specialist) will cut a hole beside his nose and go in through the bone and sinuses to get to the tumor that way and then both will have to work to cut as much of the tumor out as possible. All while staying away from the optic nerves and the two corroted arteries and all of the other very delicate things in the way....

I really must have done something right for Heavenly Father to trust me to make this decision... I have NO IDEA what it could have been.... I don't feel qualified or even worthy to make this decision. Kurt hasn't said much about it. I can't imagine what is going through his head right now.

I guess this right here is the best explanation for why I got married in the temple. There is a very real and very possible chance that Lukas could not make it out of the surgery alive.

I keep saying "I", Kurt and I had to come to terms when Lukas was diagnosed with the very high possibility that if the cancer didn't kill Lukas, the treatments could. We had to be ok with that, we had to accept that possibility. Then we were told his chances were great! Treatments were easy, survival was very high, Lukas would get done with 6 easy rounds of chemo and go home and never look back. Now we are back to having to (and now in less than 48 hours) come to terms with the very grim possibilities this highly aggressive and invasive surgery holds for our baby.

I feel like....well, I really don't know what I feel like. I feel like I'm going to choke on this lump in my throat. I might even black out from the loud ringing in my ears. My eyes are burning as I try and hold back tears. I can't stop this constant trembling of my entire body. My brain is on the highest level of overload and I wouldn't be suprised to see smoke coming out of my ears. (I say that as honestly and seriously as possible)

This just isn't good.

Tuesday, March 11, 2008


Waiting is one of my least favorite games. Add waiting, then hearing not so good news and then top it off with making decisions based on the not so good news, and there you have it. My absolute, most hated game of all. It's called the "Lukas has cancer and it's not responding to his treatments and isn't doing what it's supposed to" game. Yep, pretty much 100% positive I hate that game.

So Lukas MRI and VEP (visual evoke potential-goggle test) preliminarily showed no change or possibly the tumor is a tiny bit bigger and no response (respectively). 4 rounds of chemo and 13 rounds of radiation later and there isn't much change in the head tumor.

The even more frustrating thing is that we don't know why it's not responding, we've tried everything short of doing surgery (biopsy or full fledged surgery). Now we are at that door. Surgery is pretty much immenent. Kurt and I will be asked to consent to knives going into my baby's head this week. Not so much fun. I'd rather be on a game show where my decision is what briefcase I want to open or how much that can of spam really costs... At least there, a life isn't hanging in the balance and I have the chance to win some money! Is that rude to say that last part? Don't mean for it to be, but that's pretty much where my head is now. Price is Right or brain surgery for my son. Yes, I said brain surgery. It would be brain surgery. I didn't mean to not mention it earlier, but I didn't want to say the words at all. I guess it just can't be avoided now that we are at that cross roads.

Man this sucks! I think that should be the new name of my blog. The "This Sucks" blog.

Thursday, March 6, 2008

Another Day at the Park

Lukas has been in such a good mood the last couple of days and the weather was beautiful yesterday so we met the Curriers at the park and had a nice couple of hours out there. All 3 boys had a great time. (Becky, I have a couple of cute pics of Ethan I'll email you)

Wanted to make the most of Lukas' good mood before we start chemo #5!

Wednesday, March 5, 2008

Pretty Neat

I am getting to meet some really amazing people through all of this. We had our LOVE lunch Monday and just with the few parents and grandparents that are there, we are going to be raising the funds to build an entire NB center! Yes there will corporate sponsors and grants and government money, but it takes ordinary people like us to do the leg work and these people I've met are far beyond ordinary.

I thought I knew a lot about Lukas diagnosis and the treatments and drugs he's on, but these parents know far more that just that stuff. They know about new protocols coming out, new drugs that are being tested, what docs at different hospitals know what better and who to call to get second opinions. They know so much and it's parents like that that are changing things for our kids. Asking questions, doing their own research and pushing for alternatives to what is available to us now.

I'm amazed and lucky to know such great people.

There is one mom that I met and I really admire her. She is a single mom with 2 kids. Her youngest is battling NB right now. The mom doesn't really have any family here, they are all out of state, so she's going through all of this on her own. I can't imagine that. But she has a smile on her face and she's so positive and just the love I see in her face is something extraordinary. I can't wait to get to know her more. Like I said, I just really admire her for her strength and endurance through this.

Kurt took this right after Lukas first surgery... He has changed so much.