Radiation Update!

Linda-one of the Transport Nurses that takes us to Harris for radiation (there is a sky bridge so we just walk over)

Lukas being sedated and one of the radiation machines, this one was him going for the radiation scans before we started treatment.

Okay I'm a little slow at posting updates sometime, My apologies! Heather keeps telling me I have nothing else to do so I need to get on it. Anyway, so here is an update. Lukas started radiation last Wednesday. Heather was a bit nervous about it, well alot. So when Kurt got home from work that day they took off to the temple, did a lot of praying, and she feels alot better about it. So Lukas has been doing okay with it all, he was really tired for the first few days, all he did was sleep all day long. not even joking. so anyway, he has the rest of this week and then all of next week. Then they have scheduled more scans after radiation is all complete. Here it is all in Heathers words.........

Ok, we have rescheduled our 3 days of scans from next Monday 4th-Wed 6th to Feb 11th for the CT Scans and Bone Scan and then Feb 13th for radioactive contrast for the Feb 14th MIBG and MRI. Got all that? Confusing, I know. The doctors didn't want to do scans before we were done with radiation, one-because he would have to be sedated twice in one day for each set of scans and two-because if we weren't done with radiation, we wouldn't really know fully what the tumors reaction to the treatments was. We will also be meeting with Neurology again to assess Lukas case because he has the "dancing eyes"-pretty much it looks like his eyes are having seizures. Dr. Hunt (opthamologist) said it could be a little bit of opsoclonus-myoclonus ataxia but that means "dancing eyes, dancing feet". Dr. Grainger (oncologist) said that you don't have one without the other and his feet don't flail around when his eyes are. We will also be meeting with the only and very well respected Neuro-Opthamologist in the DFW area (Dr. Nick Hogan). There is so much going on with the tumor in Lukas head and it's causing such weird side effects that our doctors haven't seen before that they want everyone to look and come up with a solution or answers, but hopefully both. Tomorrow we will be doing Xrays again before radiation which is normal, they do them every 5 days, but that will only add on a couple of extra minutes.

Clinic yesterday went fine, counts are good. Lukas is on Tylenol/Codine more now because the radiation is wearing him out and he just can't get comfortable or deal with the aches and pains of all this. His appetite is not so good right now, some things he eats one day he can't stand the next so he gets Pediasure on days that he won't really eat anything. The docs said they don't care where his calories come from right now as long as he's getting them. That's about it for now, when we get scans we'll update you on those.

Lukas!

Lukas is such a doll!! He is so well mannered for going through such hard stuff. This was on Sunday he was having so much fun with this toy!! Isn't he just precious???? Today was the first day of Radiation!! Not so fun!! He did pretty good though. Heather is feeling kinda uneasy about it, hopefully its just worry!

Theron!!

Theron has got to be the funniest most random kid ever!! He is always doing something funny!! Last week Theron stayed over and this is what he was doing. He cracks me up!

Update 1*21*08

Ok, so we went and got the radiation scans today. They had to do their own scans into the actual radiation machine and system so that each time he goes to get radiation, the machine knows exactly (VERY EXACTLY!) where to point the beams. He will be getting IMRT which is Intensity Modulated Radiation Therapy. It sends beams of radiation to all different angles of the tumor. He had to be sedated today and will have to be sedated every time he goes in for radiation. We will go in Wednesday for a mock run to make sure that the machine is correctly calibrated and lined up exactly and then we'll start radiation on Thursday. We will go in for 12 days (except weekends) at 7:30 each morning for therapy and then come home. Our major concern was the side effects it will have on all the bones, eyes, brain. Lukas will be getting a very light dose so the side effects to his growing bones and eyes are very minimal, (the bones could grow weird, but it's a cosmetic side effect if that happens), but they still have to be extremely careful with his brain. The radiation oncologist is planning on not hitting his brain at all with the beam, that's the goal. There could be learning disabilities, but that's the same with chemo, so that is where Early Childhood Intervention will come into play. We will get an appointment set up for them to come and evaluate Lukas now and make sure he's on track and then they'll continue to monitor his development. There are also the other side effects like nausea, vomiting, diarrhea, skin burns and lack of appetite.Lukas is also starting back on steroids today and will be on them until the oncologists feel they have helped. Those come with their own fun side effects. Swelling, either an insatiable appetite or no desire for food at all, and either a great mood or really cranky and tired, stomach distress (which he'll be on Zantac to help that side effect).. The list could go on!We are interrupting chemo for radiation. As soon as we are done with radiation, we'll start up chemo again. We don't know if the damage to his optic nerves is permanent or reversible, don't know if when the tumor shrinks enough he'll be able to see again, that's all unknown still. We'll just have to take it one day at a time and see how it goes. There is a possibility of hospitalization if he stops eating and we can't keep fluids in him, he might have to have transfusions if his counts get too low for him to be on anesthesia... So it will literally be one day at a time for us for the next 3 weeks.

Beth's Charity Ball Turn Out!

Beth's Charity Ball was HUGE Success!! Everyone had so much fun!! There were about 100 or so people that came and she raised a little over 3,000 Dollars!!!! Yeah!!! Its all going to Cook Children's Hospital in Fort Worth to the Oncology Ward! Beth is such a doll, she is always thinking of someone else. I mean how many 15 year olds do you know that would want their 16th birthday a charity ball?? Almost none!! It was a lot of fun and Its going to be a yearly event. Heather is putting the charity foundation together and we are all going to be on the board its going to be bigger and better every year!! The Charity is A New Year of Hope Foundation!! In Lukas's name!! So we hope to have all of you there next year that were not there this year!!!
Happy Birthday Beth and Good Job!!! Thank you too all those who donated!! It will be really appreciated by all those children it will benefit!!
Ps I decided that there were so many pictures I would just do a collage of them, hope you like!! If you click on the picture it will get bigger so you can see them better!

After it was all over, those of us left went outside and let all the balloons go, kinda symbolic! It was really cool!!

Sweet Baby Update

Update 1*17*08 Lukas had his clinics today and they have decided to do an MRI tomorrow morning. They want to see whats going on in that pretty little head of his! The signs aren't looking great, but hopefully there isn't anything else wrong. Please keep Lukas and his family in your prayers tonight, and until we know more! Thanks so much for every ones support!

Newest Update 1*14*08

This is the newest suckiest news we have had in a while! I guess better blind and alive though right??

So the optometrist appointment today sucked. Lukas now has visible damage to his optic nerves. Dr. Hunt said that his case is completely unique so he doesn't know how to proceed. Lukas eyes should be getting better with chemo and they are getting worse. One of Dr. Hunt's good friends is a Neuro-Opthamologist so he is going to call him and see what he thinks we should do next. We are probably going to end up doing scans (head) right away so he can see what is going on up there and so he can figure out what to do next. We could possibly try steroids to reverse the damage, but in other cases where there was nerve damage it only worked about half the time so it's a toss up whether or not to try it. Dr. Hunt said that he has already read everything out there about Neuroblastoma and eye problems and Lukas hasn't presented with anything like the documented cases so he's going to get some advice from his friend and then talk to our Oncologist team and see what to do next. He also started talking long term. He is going to refer us to Early Childhood Intervention to come and assess Lukas development so far and then they'll watch him to make sure he continues to develop as normal as possible, and teach us how to help him. When he gets ready for school they will help him learn to use aides.

Sucks. :(

Beth's Charity Ball!

Charity Ball!!!!

My sister Beth is having her Sweet 16th Birthday Party!! She decided to have a Charity Ball, even before we knew Lukas was sick. Now that we know Lukas is sick the focus has changed toward Lukas! She is asking that everyone please just donate instead of bringing her gifts. She is giving ALL the donations to Cook Children's Hospital in Fort Worth. They are an amazing hospital and have taken such good care of Lukas! So please come and have fun and support this great cause.

Friday 1*18*08

7:00 pm till 11:00 pm

Waxahachie

The Church of Jesus Christ of Latter Day Saints Building

2418 Brown St., Waxahachie, TX 75154

There will be dancing and treats!! Come dance with your family or sweet heart!

We are going to be doing this every year now, hopefully it will just get bigger and better and we can start donating to the American Cancer Society as well!!

This is a dress up thing but does not have to be black tie!

The Big Brother!

THERON!!!!!

Okay if you don't have the privilege of being around this little monster, you are SURLY missing out!! Theron is HILARIOUS!! He is always learning something new, and just being a HAM!! I love it! He learned how to do the "whats on your shirt, and then hit you in the nose thing". It is so funny, he says "whats on your shirt, Buup!" Another new thing he does is when he is eating he gets him mouth full of food and growls! Emma is scared of that. She always cries!! Its really funny. We are always laughing at him or with him!! I think Theron sometimes gets looked over since everything is going on with Lukas, but he has been taking it all in stride and doing pretty well with it.

Taking care of Lukas!

Jammin with his great grandpa!

Dr. Love!!!

Gimmie some sugar!!!

"See Food" anyone???

Yeah I'm cool!!

Everything is and instrument to Theron. He loves pretending to be in a band!!

Yeee Haaa!!!

Just try and tell me I'm not cute!!

From Start Till Now!

Here are a Bunch of pictures of Lukas (from the beginning till now). There are a lot more, I will post those later! For now enjoy! I had a really hard time going through all these pictures. Maybe it was a combination of the music I was listening to, I don't know. I just got all emotional looking at that sweet boy and his big brother. The thought that he has to go through all of this just breaks my heart. He is such a little trooper though, he is always laughing and playing, even though he doesn't feel good. I hope you enjoy looking at these as much as I did.

The shaving of the head!

Lukas and Daddy!



He just needed a rest I guess!


Maw Maw and Lukas!


Heathers Grandpa and Lukas!!

Santa and Mrs. Clause came to visit in the Hospital!



The Christmas Tree on the floor Lukas was on.


Heathers Mom and Grandma going for a stroll!

Mommy and Me!!!

I have to tell Heather how much I look up to her. She is doing so well with this. She never gets a break, taking care of this sick boy and his brother, who has been sick the last couple of weeks also. She never complains never asks for help, she just does it, and with a smile and a good attitude. I cant imagine having to do that day in and day out. Its hard enough being a mom but for all this on top of it. I'm really proud of you Heather and I really admire your strength and your faith. I would hope that we can all learn something from her.