Monday, July 28, 2008

Lots O' Pictures!!

Here are some from our last hospital stay.

What is that you ask?

Oh, yes, that was the stay where they told us Lukas DIDN'T HAVE CANCER ANYMORE!!!

Loading up on antibiotics and playing like a rambunctious little boy! (Notice the blue under his chin? It was a wrap to hold his needle in place. His port was infected so it itched really bad and he kept pulling at the needle.)

"Ock, ock!" That's Lukas for rock.

Port was finally removed and we started the game of Peripheral IV's... The game part was finding a good vein that wouldn't collapse. The next few pics all feature a different PIV.

Yes, Lukas likes to get his own vitals, thank you very much. He can do it all, blood pressure, temp, pulse/ox, and he can use the stethescope like any trained professional

Calling in a rescue card... No one came.
Theron paparazzi shy. All 12 tries and 8 PIV's later, we had to insert a PICC line. Went into his exterior jugular on the right side of his neck and then the "noodle" was looped over his ear and secured with a BUNCH of tape. He had to be sedated in PICU to have this inserted and I got to go down after it was in. Let me tell you, Lukas is the funniest drunk baby! He had just "woken up" from the anesthesia and was babbling, calling Nana, wanting a ball and trying to flop all over the place. He had a room full of nurses taking in the show! We actually got to see our PICU nurse from after Lukas surgery back in March. She was amazed at how far he's come in such a short time.

Lukas sharing his Bink with Uncle Bud... Man he's a whitey!
Theron rockin out to Guitar Hero. That kid is a guitar junkie!

Lukas took the drum sticks from another kid and started dancing and beating the drum pads. It was really cute!

Lukas decided he wanted to sit in this Bumbo and got stuck! It took two of us to get him out! Me to pull him and Beth to pull the Bumbo! He didn't think it was as funny as I did.

This is Lukas first picture after getting the results of all his scans. NED!!!! No Evidence of Disease!!!!!!! WOW!!!
Another beautiful shot of his PICC line.

And this......led to this....

New port on the right side. He needed it anyway, so this wasn't a suprise to us.
So for now we are just living life and having as much fun and good times as we can. We still have clinic visits, now just once a month though, and we are now on our 3mos. scan schedule. Don't have to see the Neurosurgeon or ENT for another year and we were just released today from our NeuroOpthamologis. So that leaves us with our regular Opthomologist and Oncologist appointments. And of course we are still doing music therapy once a week and vision therapy twice a week. I like the direction this is heading but, man, it sure feels weird. I had this horrible feeling for the last few weeks that I've been forgetting something, that we have missed appointments. He is also still on 3-4 medicines a day and getting his IVIG infusions once a month, so I guess it's hard for me to feel like we are done, because we really aren't, just done with the harsh chemicals. We still have another 6 months of medicines to take every day to make sure he's back up to 100%, he is still suseptable to infections and illnesses, but he is recovering. Slowly but surely we are making it there.

Thursday, July 17, 2008

Have to post this before I forget!

Ok, so two Sundays ago (yes, Fast Sunday) we were sitting in Sacrament and about halfway through Theron looked at me and said "Mom, it's my turn, I want to go up there" pointing to the stand... So we make our way out into the hall (we were sitting in the overflow), back into the chapel and up onto the stage. Our ward is amazing because there are always a ton of kids that go up to bear their testimonies. I'm always so impressed with them getting up on their own and waiting patiently for their turn.

Anyway, we waited for our turn and when it was time Theron walked right over to the stool, moved it in front of the stand, Ryan lowered the microphone and Theron climbed up. He pulled the mic down and said, really loudly, "Hi guys" and then froze up and wanted to get down!

So, I guess we can chalk that up on the fairly successful testimony of a 2.5 year old.

And, yes, if you are wondering I did bear my testimony after him, though most people thought we were new to the ward since we have a million new families now!

Tuesday, July 15, 2008

I've got to retrain my brain.....

So I met Will for lunch at Pizzaiolo's today with the boys and the first thing I see when I walk in is a little girl, probably 6 or 7 with a buzzed head.... What does my brain do??? Look for scars, any paleness, and central lines dangling or a port protruding! I had to stop it there and think that it was just how she wanted it, or she got gum in it or lice...

Man what I wouldn't have given for Lukas to have been bald from gum or even lice! Yes I said it, lice! Those are easy to fix! Shave the head, use some peanut butter in the gums case or a special shampoo in the lice's case and wall-a, it's all gone!

Ok, so I didn't post that to be depressing, just have a lot of retraining to do, body, mind and spirit. Working on the bigger, no wait the slimmer, better Heather.

So if you read all the way through, I have a little treat for you! PICTURES!!!!!

These first few are from our camping trip to Ray Roberts with the Curriers. We decided we needed to get away one weekend before Lukas next round of chemo

These next few are of Lukas and Ethan's (Currier) first baseball game. We went to the opening night of the GP Airhogs. It was a blast! Theron got to run the bases with all the other kids after the game was over.

Next is Theron reading a book to Lukas one night, man, he is such a GOOD big brother! I'm so proud of how well he's held up these last few months!

And then Theron's first time playing in the rain! He LOVED IT! I wanted to get out there with him, but I was having too much fun taking pics and seeing the look on his face when I actually told him to go play and get wet!

That's all for now, I'll have more pictures soon!

Monday, July 14, 2008

good news, good pics, good background....

By gollie, I think I have hit the jackpot!

Like my new header and background? Pics were done by the talented Melissa Fullmer... Thanks Melissa for doing these for us, we are almost ready to get some more of the new and improved Lukas who just so happens to be CANCER FREE!!!!!!

Man, I just can't say that enough.... Lukas doesn't have cancer!!!!

Anyway, I promise I really will have pictures up eventually... Just haven't downloaded them yet. But soon! I PROMISE!

For now, I'll leave you with an update, Lukas goes in Friday to get his new port put in, yes he's done with chemo but he is still getting his IVIG and for those of you that don't know, he's been through close to 16 tries and 7 successful IV's in the last 3 weeks, so we very much need a port put back in. Then we don't have another clinic until AUGUST 7th!!! So weird!

So, you can always check back on Lukas caringbridge site for updates or to read his story.

Peace out homies! I'm going to eat some more steak!

Sunday, July 6, 2008

Hey, guess what?


Yes, you read that right. His latest Bone, CT and MIBG show NO EVIDENCE OF DISEASE!!!!

He is in remission, he is NED!!! WOOOHOOO

We've been celebrating (and doing a lot of catch up sleeping) the last few days. Pictures to follow when I get them uploaded....