ugh...

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.

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!

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.

Harvest

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.