Wonderful News!!!

This is the little boy we want back!!!!!!!!!!!!!!!!!!!!!!!

Holy! 11 days, 4 scans, 2 surgeries (at one time), 1 round of Chemo and numerous labs later, we have the most WONDERFUL NEWS!!!!

We got our biopsy results back from NY today and it showed that Lukas is NOT HIGH RISK!!!! He has, most thankfully, been demoted to Intermediate Risk, which basically means that he went from a possible 70% chance of not surviving to 85-90% chance of SURVIVING!!!

WOOOHOOO!!!!

The biopsy they sent out was to check and see if the cancer gene had extra copies of the MYCN gene (amplified). If it did, we would be high risk, the cancer would be really hard to kill and we'd have a really long hard battle in front of us. Since the tests came back negative (not amplified) we now have a much easier cancer gene to fight and the battle is down to about 3-6 months. We are going to do 3 more rounds of Chemo and then if we need to do surgery to remove the head tumor, we'll do it then. If it's still too big, we'll do a little more chemo and then surgery or (hopefully) it will disappear with the additional chemo. But that should be all the treatment we'll need. Of course, we'll see how Lukas does and how his body and the cancer react and make any necessary changes, but I have to say, right now-it doesn't get much better than that!

Thought you all could use some good news!

We also had our MIBG scan and Visual Evoke Potential tests today. The MIBG scan is a nuclear scan. Lukas was injected with a radioactive dye yesterday, then the scan is performed 24 hours later. The dye is supposed to attach to this particular type of cancer cells and then glow on the scan. He had a whole body scan to show exactly where the cancer was so that we could go back later in treatment to see our progress. The Visual Evoke Potential test had something to do with goggles and making sure that Lukas' vision was affected by the tumor and not nerve damage (forgive my lack of understanding and explanation on this test!)... Don't know when we'll get results back on that. Also, he had his first blood transfusion today and took it like a trooper. He's still sore and on Morphine, so we can't go home until his pain is manageable with Tylenol/Codine or equivalent drug. So we'll just be waiting on him to get feeling better!

Visitors: Lukas is still going to be on Chemo which still means no immune system. No matter how much I love you and miss you (or how much you love Lukas and miss him!) you are not allowed around him if you are feeling the least bit down and crummy!! I still don't want kids around him for now with the flu season and colds running rampant. You can be upset about that, but get over it please! I want Lukas to realize his full potential of making his 85-90% chance of recovery and getting him sick could very well jeopardize that! If you are feeling well, call and we'll figure out a time for you to visit.

I know that Heavenly Father has a great life in mind for our sweet, precious little Lukas. I told Kurt tonight, he has been a miracle from the start and we get more and more glimpses of it each and every day. Thank you, EVERY SINGLE ONE OF YOU, for all of your prayers, support and thoughts every day. Please keep up the prayers for Lukas and his doctors and nurses! I just have no other words to show my gratitude and thanks and awe in what you have all done for us. It leaves us speechless. We are more than thankful-there just aren't words to describe....

Love-us
MacDonnell Crew

Good News

I forgot to mention some good news that was received yesterday. Kurt and Heather got the results back from the lab in New York and Lukas does not have cancer in his bone marrow!! That was good to hear!! Other wise, Lukas has some more test tomorrow. They are doing a goggle test to check his vision, and some more scans of his body just to see where they are at as far as treatments go. Please keep praying for the little guy, and his mommy and daddy!!

Here's the whole gang!!!

Therons Birthday!

Yesterday was Theron's 2nd Birthday!! So Kurt and Heather and Nanna, auntie Beth, Auntie Chelsea, and Uncle Beau all went up to the hospital to have a small little party for Theron. He is so cute, he was just flirting with those nurses... so we ate dinner and had a bunch of cup cakes. Lukas wasn't having a very good time, he was really sore and uncomfortable. But he still wanted to play and have fun with his brother!!

Theron was kissing his bubba's owie!

I had some requests for some pictures of Kurt, Heather and Theron with Lukas, so here are some!

Okay I was trying to get a picture of Kurt with Lukas, and the little stinker, every time i would take the picture Lukas would put that ball right in the way! So I have like 5 of the ball in front of Kurt's face, and the one of his face! Funny kid!!!

Theron was having so much fun with the balloons from Nanna, and Auntie Beth!

Lukas and Mommy!!

Lukas and Auntie Beth!

Happy Birthday Theron!

Today is Theron's 2nd Birthday! He had a Dr. appointment this morning, and then he is going to the hospital to spend the day with his mommy and little brother. We are having a little birthday party for him tonight at the hospital also!! We love Theron just as much as we love Lukas and we don't want him to feel left out with all that is going on. I (Chelsea) have been keeping Theron off and on since Lukas has been in the hospital, and he is such a sweet boy. He listens so well and just plays with his cousins. He really is sweet!!

Happy Birthday Theron ~ From your whole gigantic Family!!!

Bracelets

Okay, We have decided to custom make some silicon bracelets to help raise money for Lukas and his family. To help with all the expenses with living in a hospital. The bracelets are going to be Gold (for Nueroblastoma) and blue and silver lettering (coping with cancer). We are going to sell them for $4 each. You are welcome to order a bracelet or if you feel like you just want to contribute you are welcome to just send money! If you would please leave a comment on here and tell me how many you want, or if you just want to send money. Please leave your name and email address and we will get back to you with where to send the money. We are working on getting a bank account set up for them and I will have the link on here for those who want to just donate money. Thank you all for all of your support and prayers. They have really been felt!

Big Brother!

This is Lukas' big brother, Theron! He is such a "ham". Just call him Dr. Love!!! He just loves his little brother. He cant fully comprehend what is going on, he knows Lukas is sick, but he doesn't understand why he cant be with him, and his mommy and daddy. He has been doing pretty well considering, but last night when we were trying to leave to bring him home with us, he was so sad to leave mommy and daddy. I know this is hard on Kurt and Heather as well, to not have their little boy with them and be in their normal routine. They are handling it well though. You just do what you can, and the rest of us are just here to help as much as we can!

Cutie Pie!

I took these last night, isn't he so precious? He was in such a good mood and was just playing and jumping in his bed. He was playing pat a cake, and peek a boo, and clapping his hands and saying yeah!!! He is such a doll!

November 22, 2007 Update

Not much to report today. Lukas FINALLY woke up from surgery yesterday! He is still kind of sore, but he's been up and out of bed being held, and also jumping around in his bed. Tomorrow starts chemo, so we don't want visitors until further notice. We have also decided that we don't want children up here, due to the fact that Lukas' immune system will be shot. We don't want to take ANY chances with him getting sick.

Also, my sister-in-law is ordering bracelets. The silicone ones. They will be gold to represent the color for Neuroblastoma and childhood cancer with blue and silver to represent coping with cancer... She is going to put "Lukas 11-19-07" (date of diagnosis) and on the other side "This SUCKS!" because it just does. She wants to sell them for $4 to help Kurt and I with expenses of meals and gas back and forth from the hospital and such. But, what we don't use, I want to give to Relay.

If any of you are looking for something to do to help us, PRAY!!! And, if you are able, please go to the Temple for us. I don't know when we'll be able to go in the near future, so if any of you can do that, we would appreciate it more than you know!

That's all from us for now. We'll give another update further into this, I just don't know when. Thank you all for your prayers and visits and thoughts and gifts.
MacDonnell Crew

November 21, 2007 Update

Surgery went well! The ENT doc wasn't able to get to the tumor in Lukas head so they went ahead and took out the adrenal gland. The surgeon was very happy with how easy it was to get the tumor and gland out. The tumor was completely encased and he only had to move the liver out of the way a little to get to it. They did a preliminary biopsy of it and came back with a 99.9% surety that he does have Neuroblastoma. They also did the bilateral bone marrow aspiration and put in a port. Lukas was done with surgery around 11:10 am and went to post op. There he had a chest x-ray and echo cardiogram. Everything looks great. We are off tomorrow from tests and surgeries. Friday we will have the bone marrow pathology report back. We are pretty sure that there will be cancer in it, which won't be a surprise to us and just another confirmation of this diagnosis. We did find out that there are more cancerous legions on Lukas' rib bones, hip bones and leg bones. Dr. Eams (one of our Oncologists) said that it didn't matter if there was one bone or 20 bones with cancer. Now we just have to wait a week to 14 days for the other pathology reports to come back on the tumor biopsy. That will tell us how aggressive this cancer is and the doctors are pretty certain that it is the most aggressive. Friday we will start Chemotherapy and it will be very aggressive. It will most likely be 72 hours of straight infusion with Chemo. After that we will be here as long as it takes to monitor his blood count.

We have also moved to the "Master Suite" as we call it. Room 3111. It is at least twice as big as our other room, so Theron can come up and stay and also for visitors.

I do ask that if you want to come up and visit, please come up tomorrow (Thanksgiving) before 1:30pm or after 4pm. I don't want visitors Friday. We need to get the Chemo going and get settled into the treatments. I don't know if I even want visitors for the whole time he's on it, so if you feel like you really want to come up, please call us and let us know when and we'll go from there.

As far as ways to help... I still think we are doing fine. This is going to be a several month long treatment plan and will be very stressful and very intensive and we'll definitely need meals and rides and babysitters and anything else you can think of, just not right now. I promise to ask for all the help I can get as we get more into this.

I am more grateful than I will ever be able to express for your prayers alone! I can't even fathom where we'd be right now if we didn't have all the prayers, and then there are the visitors and calls and flowers and plants (which we can't have on this floor)... I just have no words to thank you for all of it. It means more than I will ever be able to express.

I love all of you and a simple "thank you" seems so trite, but it's all I have right now. So, Thank You!

Love, us
MacDonnell Crew

November 20, 2007 Update

Ok, here goes... Lukas had a bone scan today and a CT on his organs. We met our new head Oncologist, Dr. Grainger. She is one of the Neuroblastoma specialists here. She is an amazing lady, and I can tell that she is very good at what she does. She said that the bone scan showed several spots or leisions on the bones in his arms and his face. So this cancer has metastasized. Everything so far points to Metastatic Neuroblastoma. Tomorrow will be a very tough day for Lukas. He is going into the OR tomorrow at 8:30am and will have 3 invasive procedures. The ENT doc (ear, nose and throat) will go in and do a biopsy of the tumor in Lukas' head. He plans on going in through his mouth. The tumor does have a lot of veins feeding into it, so that will be something they monitor closely.

There are two possible scenarios that happen now.
1. If they can't get the biopsy of the head tumor, they will go ahead and completely remove the Adrenal gland and do a biopsy of that.
2. They are able to do a biopsy of the head tumor. They leave the Adrenal gland alone if so.
The surgeon and oncologist will also be in the operating room just waiting to hear what the biopsy says. Then we will proceed according to that answer.

The surgeons will then put in a port and do a bilateral bone marrow aspiration.

That's all we know for now.

We ask that you please hold off on visiting tomorrow and Friday. If you want to visit please do it Thursday. We'll need the distraction then since we won't have anything scheduled Thursday.

AND no more food please!! :) I told Kurt, we are supposed to be stressed and LOSE weight!

Love you all and appreciate the prayers and calls more than you will ever know and more than we can ever express.

Second Update

November 19, 2007 from Heather

Well, his MRI didn't go very well. Lukas has another tumor in his Adrenal Gland. The oncologist believe this is the main tumor and that it metastasized into his brain. They are giving us a diagnosis of Metastatic Neuroblastoma. That is what the symptoms are pointing at. That isn't the final diagnosis. Tomorrow we are going through a whole round of more tests to get the "real-final" diagnosis so we can start a treatment plan. Lukas will be drinking a dye that soaks into his bones so they can scan his bones for tumors, he will have a CT scan of his abdomen to check his organs for tumors and he will more than likely have a bone marrow biopsy. He will also have a urine test. All of these and whatever else they throw at us will determine exactly what Luaks has. It really sucks, there isn't anything to do right now to help us. Between Kurt's and my family, Theron, Cowboy and us are taken care of. This is going to be a really long road, so there will be plenty of stuff to help with as we start surgery's and treatments.

Thank you for all of your prayers and those of you that have visited. We have food and snacks for now. If you want to come up you can. Room 3104 at Cooks Children's Hospital in Ft. Worth.

Thank you all for everything.

The fist day in the hospital :(

I'm going to start by posting all of the updates from Heather since this whole thing started. As she continues to send them out, I will post those as well. I will also put pictures of Lukas on here so you can all see his shinning face!

November 19, 2007

As some of you know, and some don't, Lukas was admitted to Cooks Children's Hospital in Ft. Worth yesterday. Kurt and I took him to the ER by our house yesterday morning after some vision problems, really bad allergies and asthma (that we thought were all related problems). The doctors in the ER ordered X-rays and a CT scan to see what was causing the vision problems and if it was a sinus infection or allergies just reeking havoc. Well the CT scan came back and showed a golf ball size mass just behind his eyes, in the brain area, so we were sent to the children's hospital so the specialists could look at him. We are now in room 3104 of the Oncology department. The doctors have determined that we are possibly dealing with a tumor. He is scheduled for an MRI sometime today and that will tell us better what we are dealing with and what we need to do. We will also be meeting with the Neurologist and Neurosurgeon sometime after the MRI to get a plan together. Lukas is on steroids right now to reduce the swelling of the tumor or mass (or whatever it is).

That is all I know right now. If you feel the need to come up, you are certainly welcome to. Visiting hours are from 9am-9pm. Once we know what we are dealing with, I'll email everyone back again to keep you updated. For now the absolute best thing you can do for us is to pray for Lukas. He's really restless right now since he has an IV and both legs are covered in ID bracelets. He can't eat or drink anything until his MRI and hasn't been able to since 5am. So he really needs your prayers to help him make it through the next few hours.

Thank you to everyone that has already come up and that are already praying for Lukas. We appreciate it more than you will ever know.

Love,
Heather and Kurt