A Celebration!

I just wanted to let everyone know of a special event coming this Saturday the 13th!! From 5-8 pm at The Church of Jesus Christ of Latter Day Saints building at 1019 Big Stone Gap Duncanville, Texas 75137. We are celebrating Lukas turning 2!!!! We are so blessed and thankful that he has made it to his 2nd birthday so we are going to celebrate big!! We are going to have a party with music and cake and ice cream! So Everyone who has thought, prayed, asked about, donated (in anyway, including donating for the bake sales) to or for Lukas, or if you have just wanted to meet him, Please come out and do so! Everyone is welcome! Thank you for everyones continued support and prayers for him, he still needs it! He is doing really well, but the chance of the cancer coming back will always be there. So please come and support him and the 2 wonderful years of life he has been given so far!!Hope to see you all there!!

One Year Ago!

One year ago today was that very horrible day when Lukas was diagnosed with Stage 4 Metistatic Neuroblastoma! I can still remember how everyone was feeling and sense of "how do we fix this" that everyone had. It was by far the worst day of our families lives so far. Especially Kurt and Heather's. I'm so thankful that we are able to say that he is still with us and that he is (unless you know otherwise) and perfectly normal boy now! He is so sweet and so cute! The last two pictures I stole from Heather, but he is so cute. Every time I see him, he just gets cuter I swear. He is going to be a model some day!! Anyway, We are all so grateful for Lukas and the things he has taught us and the ways we have grown because of him. We are so lucky to have him in our lives! We love you Lukas and are so happy you are well! We pray it stays that way!

This was one of the first days in the hospital!

This was after his Craniotomy in March! Most people wouldn't even know he cant see, he just walks around like a normal kid and plays and laughs and talks all the time. He is so cute, have I mentioned that?

These last two were recent! The first one he was Clark Kent for Halloween!!

Lukas News!!!!!!!!!

I know I haven't been keeping this up much, I'm so sorry!!! Well the little man Lukas has been going through some things, hes had more Chemo's and tests and being sick, and all that fun stuff. In the last week thought something amazing has happened.

Lukas had all of his scans and test done and guess what?...........

LUKAS IS CANCER FREE!!!!!!!!!!!!!!!!!!!!!!

Isn't that so amazing? I'm so happy and I can hardly take it!!! That boy has gone through so much I'm so happy for him and for his family!!!

So on another note, we are officially a Foundation! A New Year of Hope Foundation. We have been working so hard and trying to get things put together and now we are trying to get our Ball done. If any one out there wants to help us that would be great! We also need donations, we can do anything with out money. We need to start donating to the Center! So please leave a comment if you are interested in helping or if you want to donate!!! thanks so much!!!

Sight :(

(Heather's words)

Dr. Hunt said the most we can hope for now is Lukas seeing shapes and being able to distinguish between light and dark. Every now and then I catch him looking at things though, so is he seeing more or just the outline of what he's fixed on? I guess we won't know until he can tell us, but when he seems to be looking at me, my heart jumps inside and I don't want that moment to end. I want him to see me, and all my imperfections. I want him to see his daddy and Theron and his family. I want so badly for him to see his nurses and doctors that have fallen in love with him and helped make him better. Dr. Hunt told me miracles do happen, he's seen them, but right now, medically, Lukas won't have normal vision. Just light, dark and maybe shapes. That's so hard to hear, I cried a little on the way home, but I am too tired and emotionally drained that my tear factory has gone out of business. But, I guess vision loss is much better than baby loss. I mean, we just put him through major brain surgery for the chance for his optic nerves to regenerate and get some vision back, is this it? Seriously? This?I guess I'm just selfish, but I want Lukas to see all the good that this world has to show. So we should start 3 more days of chemo tomorrow and work on getting rid of the rest of the cancer. I can't even type that word without cringing... ugh...

The Results are In!

These are Heather's words!

Yeah, there are still some spots lighting up on the MIBG scan, so we'll do a couple more rounds of chemo and then do some more scans to see what is going on. I'm not surprised, actually I am kind of relieved (I know it sounds bad to say) that we aren't just stopping cold turkey on the treatments. I think I personally will feel like we have some "closure" if we actually do at least one more round of chemo and we'll probably do two.I guess from y'alls perspective, you might think I'm nuts to say that I'm glad we are going to do more chemo. But, like my grandma said tonight, radiation kills what we can see and chemo kills what we can't see, so, take it how you will but I have a small sense of relief.

Answered Prayers!

An Answer to our Prayers!
Lukas had his surgery Friday and came out with flying colors!!
The doctors basically cut him from ear to ear along his hair line and peeled back his face and went in through the nose cavity. They got in there and were expecting to find a huge cancer growth, but instead found a bone mass. They are almost positive that its not cancer and that its something called Fiberousdisplacia (sp) of the bone. Which means that there is just bone that has expanded and grown. So they debulked and removed it from around his optic nerves and sent it to the labs. We wont know a definite on what exactly it is for up to 2 weeks, but so far this is what they think. So yeah! is all I can say. We are all so relieved, especially Kurt and Heather, and so thankful that the Lord heard our prayers and felt that he needed to be with us longer. Thank you to everyone who prayed for and and who continues to. Hes not completely out of the woods, he is going to have a hard recovery, but so far he is defying all the statistics! Hes a fighter! He looks really great, even after such a hard surgery. He was in a lot of pain, but looked great. I didn't have my camera or you could see how he was, so for now I just have pictures of the night before! We will keep you posted on his condition, he is in ICU, for now. Thank you for the prayers and keep them up!!!

Update 3/6/08

Tomorrow we go in to see Dr. Hunt (opthamologist) for a follow up and to check on why Lukas might still have headaches. Then Monday we get admitted through the clinic for the 5th round of chemo. It will be the same drugs as his first round so we'll see how it goes. Lukas has been in a pretty good mood the last couple of days so we went to the park yesterday with Jake, Becky and Ethan so the kids could all play. The boys had a great time. We were out there for about 2 hours.

Stem Cell Harvest Update

SIX MILLION STEM CELLS COLLECTED!!!! LUKAS IS A MACHINE!

Lukas had his apheresis line put in this last Thursday for his stem cell harvest. We were expecting to have a platelets transfusion before surgery so we had to be at the hospital at 5:30am (2 hours before surgery) to do labs and get the transfusion done. Turns out, his counts were good and he didn't need one! We did find out in pre-op that he was going to have another bilateral bone marrow aspiration though. They wanted to check the marrow again for any cancer. Lukas was really sore after surgery so we had to keep him on Tylenol/codine as often as he could have it. Friday we went into clinic at 7:45 am for his CBC (complete blood counts) and a CD34 (stem cell count). Docs were looking for a white count higher than 1000 and a stem cell count higher than 10. When we got into clinic they drew labs and then, as usual, we sat and waited for results. An hour and a half later, we got to see Dr. Eames. His white counts were great, but it takes almost 2 hours to get the stem cell count back. Dr. Eames said that we might be ready to harvest that day with as good as his white counts were so Lukas and I went home to get packed up and wait for her to call with his CD34 counts. About 1pm she called and his count was a 6 so she said to double the dose on his GCSF shot and we should definitely be ready to harvest on Saturday. Saturday we had to be at the ER by 8:30 am to get labs drawn again and again we would have to wait a couple of hours to get the stem cell count back so my mom, Theron, Lukas and I went and ate breakfast in the cafeteria and then went to Target down the street to walk around and kill some time. Sure enough, Dr. Eames called us back in to be admitted to the hospital! Lukas counts went from 6 the day before to a 29!!! Like I said, a MACHINE! So we got admitted to 3 North, room 3006. Dr. Eames came by, went over the procedure risks and complications and I signed, what felt like my life, away the consent to harvest. Lukas hadn't had any pain meds since 5am so we went ahead and gave him a dose of morphine to help with pain and relax him quite a bit. The harvest takes anywhere from 4-6 hours so we wanted him extra relaxed and happy since he'd be sitting still for that long. Once the drugs kicked in, the Medical Tech (Tara) came up and her and Sana got him all hooked up and we started harvesting. The machine was really neat! His line had two ends on it, so as they were taking his blood out, they had blood (some his and some from the bank to make sure he was getting enough back right away) coming right back into him. Tara had to stay and monitor the machine the whole time and Sana had to monitor his vitals very closely the whole time too.About halfway through, Lukas got fussy so we got him some Gatorade. He drank about 4 ounces and then started throwing up a lot. We gave him some Vistaril to settle his tummy. We couldn't get any blood pressure readings and Lukas started to get really pale, so the nurses were all in every 5 minutes or so keeping an even closer eye on him. When we started getting readings they were really, really low. They talked about stopping his collection for the day. They stopped for a minute and drew labs to make sure that there wasn't anything funny going on with his blood and then hooked him back up and started again. The labs came back fine and his breathing, oxygen sat and heart rate were all fine so we finished up. The docs said that with the morphine and vistaril, along with the trauma of the harvest, it was just a little too much for Lukas little body. They had never seen a reaction like this before and we reminded them, this was of course, Lukas! A few hours after the harvest, Lukas blood pressure wasn't coming up and we couldn't get him to stir very much, his heart rate started getting pretty fast and his temp started to go up so the nurses collected more labs on all 3 lines. They did a culture on them to rule out any infection. We couldn't give him any more pain meds because of his heart rate and also we didn't want to mask any fever so Lukas had a long night with only Zofran to calm his tummy. Dr. Eames came in this morning and said labs were fine, we collected more than enough cells and she was going to take his line out and send us home! Good news! His blood pressure, heart rate and labs were all normal. Better news!Were really thankful for everyone that's been praying for Lukas! We can certainly see a difference it's making!Love-us

For a Cause!

This is my favorite picture of Lukas, it was last summer!!! Isn't he just a doll!!

I usually don't write my feelings on here, but this particular thing has become so close to me and my heart, i thought i would share a little.

My Brother and his wife Heather have always been into the Relay for Life, for the American Cancer Society. This year has become really close since Lukas has cancer. He is going to be the honorary chair at the relay this year. Anyway, his big brother (at the age of 2) is going to be a team captain and we are on his team. I have a goal to raise $100 and I'm asking for all of your support. I know a lot of you are poor just like me, but just think what even $5 would do. Everything is going to the American Cancer Society and hopefully soon there will be a cure for it. This has been the hardest thing for our family to go through, I cant even imagine how Kurt and Heather feel. Ive just been crying a lot lately, I tend to start and then just make myself stop. Its just finally really hitting home I guess. Anyway, if any of you would like to donate please let me know. Anything would help, even just a $1. Also they are wanting 100 survivors so if you are one, or know of one let me know, or have them contact me, we would love for them to come to the relay and join in our survivor ceremony! We love Lukas and hope that none of our other little loved ones has to ever hear those words, you have cancer.

The Plan for the next couple of Weeks!

Ok, lots of info and lots of new dates to tell you about...

Clinic went well today. Lukas counts were high enough that he didn't need a transfusion today. He isn't eating or drinking much of anything so they accessed his port and home health will be coming out tonight to start giving him IV fluids at night. Don't know for how long. His nose is also bleeding a lot but since his platelets are up, our story is that the tumor is dying and draining out! Dr. Howery liked that story.

Thursday we go in for outpatient surgery to have Lukas apheresis line put in (another sort of central line with two access points) for his stem cell harvest-it will be removed later on. Don't know what time his surgery will be, but we will have to be there at least 2 hours earlier so they can run labs and do a platelets transfusion (doc thinks they will be low enough by then to need it) before the surgery... probably a good idea anyway to make sure he clots well during the surgery too.

Friday-Wednesday 7:45am clinic visits for labs. They will be checking his blood counts and also his stem cell counts. They have to harvest his stem cells at just the right time so they will be monitoring him everyday until he's ready. His white counts need to be over 1000 and his stem cells have to be over 10 before they start the harvest.

He will have the Peripheral Stem Cell harvest (taking the stem cells from his blood). It could take anywhere from 1-3 days to collect enough. That will be inpatient. You can search www.cancer.gov to find a slide show of how it works.

We will still try and stay on course for round 5 of chemo to start on the 10th of March. That all depends on when they harvest his stem cells. They want him to have a couple days off in between. We are going to stick with the High Risk protocol since that seems to give Lukas the best results. That can change at anytime though, so we have to stay flexible (which has become my middle name, among others...)

Friday, March 14th (don't know what time yet) we will go to the Cooks Radiology office in Hurst for another MRI with sedation.

That is all I have scheduled on our plate for now.

Music Therepy

Getting the EKG

Yummy Cookie!

Here are the latest pictures!

The mold for Lukas' radiation!

Big brother joining in!

Newest Update 2/23/08

Ok, so this is late, but here is what has all happened since our last update.Thursday after all of our scans were done, we got admitted to the hospital. Once we were settled in our room, Lukas had to get cathederized. They had to collect 12 hours of urine to run a Creatine Clearance test on his kidneys. He also had to get an echo-cardiogram to test his heart function. The echo came back normal, but the lab couldn't get an accurate reading on the urine test so they had to do a 24 hour collection. The 24 hour collection didn't come back accurate either so the doctors decided to do a GFR test on his kidneys. We couldn't start chemo (and didn't want to either) until he had an accurate reading on his kidney function. One of the drugs (cisplatin) that he would be taking is super toxic to his heart and kidneys and if there is even the slightest problem with those two organs, giving him that chemo drug could kill him. The GFR gave us a good reading on his kidneys. They were working great.So, Lukas started 4 days of chemo (3 days of VP16 and Cisplatin and then the last day of just Cisplatin). Overall, it took about 9 hours a day to complete the first 3 days and about 7 hours the last day. The VP16 ran for an hour, followed by 15 minutes of Manitol (basically a "flush") then an hour of Cisplatin and then 6 hours of Manitol, regular fluids and "pumped up" fluids. The Cisplatin is also ototoxic (toxic to the ears and hearing) but Kurt and I decided that we would take the chance of having hearing problems rather than him loosing his eyesight. The lesser of two evils in our view. We also met with the Neurologist and the Neurosurgeosn. Surgery is NOT an option right now. It's too very, very risky. The Neurosurgeon doesn't even want to attempt surgery, one because it would take two different specialist surgeons (Neuro and Ear, Nose and Throat) to perform it. It would consist of the ENT going through his nose or opening up his mid-face if he couldn't get in the nose and then the Neuro opening up his head and going in from the top. NO WAY!!! Plus the tumor isn't pushing on one specific spot that is causing all these problems, so they can't even guarantee that if they were to go in and remove the tumor that it would fix anything. We spent 8 days in the hospital and are now home, but we had to start giving Lukas GCSF shots at home to help boost his white counts. I get the honors of poking my poor baby every day for the next 10 days. We will be working hard to get Lukas counts up and keep him healthy so the doctors can harvest his Peripheral Blood Stem Cells here in about a week. We will be doing scans on the tumor again to see how well this round of chemo worked. That will determine our next dosing of chemo. We are collecting stem cells to have on hand in case we end up following the heavier dose of chemo. His bone marrow will be totally wiped out at the end and he will need the transplant. If we don't have to go on with the heavy dose then we'll have his cells on had in case we ever do need them in the future. So that's where we are at. The unknown lies ahead and we are still working to take one day at a time and enjoy the times that Lukas is happy and smiling and comfort him when he's in pain and miserable.

Pictures to follow!!!

The latest!!

Sorry this is a little late!! Things have been crazy busy!! Things have changed a little now. They are in the hospital for the next week. They are trying to start chemo tomorrow. If all the test they have to do again come back okay then they start. They are doing a really intense round this time. Its going to be 5 days and 4-6 hours of straight drip every day. Then after this round of chemo they will do all the scans again and see if things are better. The dr's are really trying their hardest to save his eye sight. They tinkered with the idea of doing sugery on friday to try and remove some of the tumor but decided it was still too risky. The scans from the rest of his body can back good though. Things look really good there!! So keep praying and Lukas just keeps fighting!!

Ok, here is the latest. Monday we got to Cooks at 7am to register for Radiology then went up to get sedated for radiation. Lukas got his last dose of radiation at 8:05am. Once he woke up we had to be at Radiology to start the 2 hours of drinking contrast for his scans. At 11am he was back to NPO (nothing by mouth) for 2 hours. At 1pm, when Lukas was as hungry and miserable as he could possibly be we went back for more sedation and the start of the scans. After 3pm he was done and in recovery. When we were leaving we ran into Dr. Granger. She said she would reviewd the scans and call me that night. She reviewed the head CT and Bone Scan Monday night and called me. There is no change in the Bone Scan compared to the first one done in November (same week of diagnosis). Also, there doesn't appear to be any change in the head tumor. There should be some change but radiation continues to work for around 3 weeks after it's finished so HOPEFULLY there will be some change soon. Dr. Granger said that she wants to see what Dr. Hunt (opthamologist) and Dr. Hogan (Neuro-Opthamologist) have to say about the nerve damage and what Thursday's scans show. If there isn't any change or things have gotten worse, we are going to get more aggressive with chemo. She also mentioned possible stem-cell transplant and more radiation down the road. She said that the cancer is being a "difficult intermediate" and the treatments we've been doing might not be strong enough. Tuesday we went in for clinic. Dr. Howrey said that we are going to collect stem cells about a week or week and a half after this 4th round of chemo. We'll plan on doing this round according to the protocol Lukas is on now unless all the docs (oncologists and opthamologists) decide to get more aggressive right away-which I'm hoping they do. The CT's also showed that Lukas is really constipated, his colon is really full, so we have to start on laxatives. Thank you codine. Dr. Hunt was at his Harris office so he squeezed us in while we were in the area. The optic nerves aren't getting better, if anything they are getting worse so he will be calling the oncologists and working with them for our next steps.Today (Wed) we went in to get the radioactive MIBG injection for tomorrows scans. Thursday we go in for the MRI and then the MIBG scans (all under sedation). He can't eat after 6:30am and then clear liquids until 10am. We have to be back at registration at 11:30 am. Our scans start at 1:30 and will probably take a couple of hours. When those are done we go up to clinic to review them and decide what our next step is. We will be admitted for 3 days for our next round of chemo-whatever dose it might be. That's it so far-a lot of stuff happining already and it's only Wednesday!!! Sheesh, I'm ready for this to be over.

Last day of Radiation!

This has been a LONG and horribly crappy week for Lukas and the rest of us. The steroids have really messed him up this last week and made him irritable, miserable, restless and have made his poor little tummy really upset and gassy. He sleeps for a few hours after radiation everyday and then doesn't sleep very well at night. But the good news (I guess you can call it that) is that Today is our last day of radiation. Here is our schedule for the week. Monday-register to Radiology at 7am; go up and get sedated and start radiation; wake up and get back down to Radiology by 9am to start the 2 hours of drinking the contrast fluid; 11am start NPO (nothing to eat or drink) for 2 hours before more sedation; 1pm get sedated and start CT scans and Bone Scans; go to recovery to wake up; wait for doctor to get results and then go over results....LONG DAY #1!!Tuesday- 8:30am Clinic (long day in itself!)Wednesday-12:30pm be at Radiology to get injected with radioactive contrastThursday-not sure what time yet, but get registered at Radiology; get sedated; start MRI and MIBG scans; go to recovery; wait for doctor to get results and then go over results.Somewhere in between we are supposed to be meeting with Dr. Hogan, the Neuro-Opthamologist and Dr. Malik, the Neurologist. Haven't been able to get the appoitments set up yet... That's a long and frustrating story for another time...That's the scoop so far. When we know about the scan results and when we FINALLY get appointments with those two specialists, we'll let you know more.

A Visit

Heather and the Boys were over one day after radiation, and they were having so much fun with the trains. I think Heather was having more fun than the boys were. Ha ha!!! Anyway, they had a good time playing.

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!