So Tired..

We are all just worn out. Theron is sick now. This beautiful (and I use the term lightly) weather is really bothering his asthma. His poor eyes have been so droopy the last couple of days and he can't stop coughing. He keeps saying it's an owie when he coughs or his lungs start to tighten up.

Kurt has had a ton of bids to do the last few days so he's been up late working every night and then he's been sleeping with Theron because Theron hasn't been sleeping well since he's been sick, so he's up all night with him.

Lukas is just worn out period. I don't think I need to explain why.

Me, oh, let me count the reasons...... I have to get up at least every 2 hours to change Lukas diaper since he started IV fluids at night, I don't get much, if any nap when the boys go down because they aren't on the same schedule anymore. I can't sleep anyway without lying in bed for at least an hour each night trying to make sense of all of this then I wake up at 6 or 7 in the morning to unhook Lukas IV and that stirs him so I have to rock him back to sleep. And starting tomorrow I'll have to be back at the hospital at 7:45 am every day until his counts are good enough to start his harvest... That means leaving my house by 7am, which means I have to get up by 6:15 to get ready. Yes, I have to get ready because if I don't get a shower and get going, I'll fall asleep driving and then we'd have a much more serious situation on our hands...

If I had the money, I'd hire a full time nurse that slept during the day and was up with Lukas at night.

I'm so stinkin tired. Eck.

Better Day

Much better! Lukas actually ate a lot of food. And he didn't have to gag any of it down. We started IV fluids last night. He gets them for 10 hours (pretty much the whole time he sleeps) and I get wet diapers every hour and a half, but it's totally worth it, if he feels this much better the next day!

Theron's asthma has started to really bother him again. He didn't sleep very well at all last night. He sounded like a dying seal with all of his coughing, but the fist thing he wanted to do was ride his bike this morning. That's all he wants to do every day actually!

So stinking cute! Both my boys!

My Big Boy!

So right now, instead of sleeping, Theron is watching daddy play hockey on the XBox... He keeps yelling "go, go, go!!! Cooooome ooooon!!!! Oh, man!"

He is soo stinkin cute! All boy for sure. And he's talking so well, learning his alphabets and colors and shapes. He was looking at a friends first words book during Sacrament meeting and started naming off the letters in the word "word". Kurt was so excited. He can even draw his O's and C's and is getting close on his W's!!

He's also become VERY independent. The most used words in his vocabulary are "No, mom, I do it" (with an emphasis on I!). He can put his pants on and zip them up and put his shirts on, socks and shoes, jackets... It's amazing how just a couple of years ago he was this tiny eating machine and now he's a big eating machine!





Yes, I think he's pretty good reason to brag!! I love his soooo much! A million times over.

More Tears

They always seem to come when I'm left alone to my thoughts. My thoughts are easy to push away when I'm busy taking care of the boys or out and about, they are even easy to push away each time we go to the clinic or hospital. I'm busy doing something then. It's when I'm done with my responsibilities and I can't find anything to watch on TV or when I'm desperatly trying to fall asleep at night before the ringing in my ears from the days activities dies down and all I hear is silence. That's when my thoughts haunt me. That's when I realize how bad this all really can be. That's when the hope and all the good statistics seem to leave me and I can't help but face the fact that cancer can kill my baby, his treatments can kill my baby. He is a fighter, but I'm not. Each day gets harder to face. Each change in treatments means more unknowns to me. I'm not a fan of our hurry up and wait lifestyle we have been thrown into. And when Theron, only being two, seems to understand how bad off Lukas really is, I can't hold back the tears. He loves Lukas so much. He wants to be with him all day and rock him and kiss his owies all better and help give him medicines. Hearing Theron say "bubba is sick, bubba has cancer" are the hardest words to hear.

I don't like being left alone with my thoughts.

Watch Out Daddy!!

A new photographer is in the making!

Theron has learned how to use my digital camera and is starting to get the hang of using it! He is getting pretty good!

Here is a nice sampling of his early work:










(squished blueberry... not a nice juicy bug!)

Home Again

8 days in the hospital and now we are home again. I love being around the nurses and docs at the hospital, but man, nothing beats being at home.

CNCF

Midnight

...and still trying to really be ok that there wasn't any change to his cancer after 3 rounds of chemo and 12 rounds of radtaion...

It sounds good to say "at least there isn't any more cancer growing anywhere" but I'm still trying to convince myself that even though it isn't shrinking, at least it isn't spreading or growing.

He might as well be High Risk, Dr. Granger said his cancer is a very difficult Intermediate Risk.

Stupid Cancer. Cancer Sucks... I'm copywriting that phrase and all the money goes to wiping out this stupid, stupid, mean and vicious, stupid cancer! I HATE CANCER!!!!

UGGGGGGGGGGGHHHHHHHHHHH!!!!!!!!!!11

Bloody Nose

(Dr. Tomberline) Oh, that ok, just means the radiation is working and the tissue is dying...

(in my head) Oh, ok, then it's not a big deal that my BABY is BLEEDING from his NOSE!!! Now I'm not worried that his BRAIN is leaking out everytime I have to suction out his nose!!!-ok that was a little extreme, I know, but I have a grosely vivid imagination...

(Me) Ok. I guess that means it is working [nervous chuckle]. You're the doctor, if you aren't worried then I won't...

Panic

I hate radiation and I really hate the steroids Lukas is on, but knowing that it will be done Monday and realizing that we'll know then if it has worked has festered a little, and growing panic.

If it didn't work as well as it needed to, there are really serious side effects that I just caused Lukas to have, and for nothing!

And you know, the most horrible thing is that, after meeting some of the other moms of NB kids, every single one of our kids are completely different. Thier symptoms, their reactions to the meds and drugs, to the treatments, not one of our kids has anything similar other than thier diagnosis of NB.

There isn't a cure for NB, there are treatments to prolong the life of the patients and hope that the cancer doesn't come back. So I'm really a little panicked about all of this. Oh, this is so much to deal with, I just don't have words to express myself properly right now.

I have hope, but I have more panic and nerousness and unsurety more than that.

Steroids Suck

That pretty much sums it all up...

If you have been "lucky" enough to be around Lukas this last week, you know what I'm talking about. MISERABLE, IRRITABLE, UNCOMFORTABLE, MISERABLE. Did I mention miserable. My poor baby.



On another note, we have discovered Theron likes American Gladiator... He's enthralled right now, we can't tear him away from it!