Lukas Benjamin

A Celebration!

2008-12-08T12:28:00.002-06:00

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!

2008-11-19T10:16:00.005-06:00

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!!!!!!!!!

2008-07-04T11:12:00.002-05:00

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 :(

2008-04-09T11:55:00.004-05:00

(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!

2008-04-03T22:45:00.002-05:00

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!

2008-03-16T21:54:00.002-05:00

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

2008-03-06T20:16:00.001-06:00

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

2008-03-03T12:13:00.000-06:00

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!

2008-02-27T11:40:00.002-06:00

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!

2008-02-25T21:49:00.000-06:00

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.

2008-02-25T11:51:00.005-06:00

Music Therepy

2008-02-25T11:51:00.004-06:00

Getting the EKG

Yummy Cookie!

2008-02-25T11:51:00.003-06:00

Here are the latest pictures!

2008-02-25T11:50:00.002-06:00

The mold for Lukas' radiation!

Big brother joining in!

Newest Update 2/23/08

2008-02-24T23:35:00.002-06:00

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!!

2008-02-16T22:54:00.002-06:00

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!

2008-02-11T12:51:00.000-06:00

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

2008-02-04T12:52:00.000-06:00

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!

2008-01-29T14:41:00.000-06:00

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!

2008-01-23T13:59:00.000-06:00

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!!

2008-01-23T13:55:00.000-06:00

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 12108

2008-01-21T22:33:00.000-06:00

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!

2008-01-21T15:11:00.000-06:00

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

2008-01-17T14:44:00.000-06:00

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 11408

2008-01-14T21:07:00.000-06:00

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!

2008-01-13T21:49:00.000-06:00

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!

2008-01-11T13:58:00.000-06:00

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!

2008-01-08T12:36:00.000-06:00

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.

Update 1808

2008-01-08T12:35:00.000-06:00

Well, we had a nice Christmas at home with Lukas. His counts were on their way back up and he was feeling pretty nice. We got to go to my aunts house in Krum for my side of the families Christmas party on Sunday the 23rd. We took Christmas Eve off and stayed home. Lukas was really tired from the day before and was starting to get congested and a little warm. We did our small family party with Kurt's brother and sisters Christmas Eve. Lukas went to bed early with a little bit of a fever. He was exhausted and worn out. Theron, Coen and Emma made sure all of his toys got attention though! Christmas day we got up and met my mom, brothers and grandma for brunch at IHOP. Lukas had a huge appetite! I guess all that sleeping made him really hungry! Theron and Lukas had a nice visit but were starting to feel more crummy. Theron's asthma was really flaring up and Lukas was even more congested and coughing. When we got back home they were both running a small fever. The doctor on call (Dr. Beam) wasn't too worried about Lukas because his fever never got over 99, so we could give him some Robitussin to help the cough. By 8:30 Wednesday night Lukas' fever was staying right at 100 or a little above after taking Tylenol, Robitussin wasn't helping and he was miserable. Theron had a fever that wouldn't go away and his breathing treatments didn't seem to help much. We had a different doctor on call (Dr. Heym) that said we should take Lukas into the ER to run labs-just to make sure there wasn't anything wrong. Since both the boys were sick with the same symptoms, Kurt and I decided to take them both in. We got to the ER about 9:30pm (12/26/07). The nurses came in and did vitals. The ER doc decided to do chest XRays. They had to access Lukas to draw labs. They did the regular CBC (checks the counts) and also checked the blood to make sure there wasn't an infection in the port line. The Xrays both came back clear but Lukas was neutropenic so they admitted him and sent Theron home with a strong steriod to help his lungs. About 2:30 am we were taken up to room 3101 and there we stayed until Sunday! They had Lukas on antibiotics and checked his counts ever morning. By Sunday all his counts but the neutrophils were good so they discharge us. Dr. Grainger gave him a shot of GCSF (growth factor shot) to help boost his neutrophils. The shot seemed to help him out and by the time we went back into clinic Thursday (1/3/08) his neutrophils were at 730 (at 50 when we left). He was ready to start chemo again, but would have to wait until Friday the 4th to start. This round was with 2 different drugs and would take about 7-8 hours to administer and there wasn't enough time Thursday to start. Friday we got to clinic at 9am and got started about 10am. He had to have 2 hours of hydration before we started to make sure his body would flush the chemo properly. Once the hydration was finished we started the first drug (Cytoxan) which ran for an hour. The next drug (Etoposide or VP16) ran for 2 hours. We didn't have a room in clinic to do this so we had to be out in the general play room while his chemo ran. He played for a while and slept a little and then played some more and ate a little bit and then finally about 3:30 he was exhausted. I held him for about an hour and then my mom took over. At 5:15pm we were finally done in the clinic. We had to go back to the hospital on Saturday for the 2nd dose of the VP16. We had to wait for a bed to open up on our floor and about 4pm we were able to go in. It took another hour to get started and then 2 hours for the chemo to run. Fortunately we didn't have to do hydration! Sunday was better. They had a bed ready for us first thing so we got in and got done by 4pm. And that brings us up to date. Lukas is doing well so far. It took a couple of days the last 2 rounds for the effects to start, so until then we are enjoying Lukas' good mood.

http://www.cancer.org/docroot/lrn/lrn_0.asp

Lukas Update 122207

2007-12-22T14:29:00.000-06:00

Well, here it is, two days until Christmas!

It's been a fairly good week. Lukas started getting more uncomfortable and fussy earlier this week so we took him into the ER Tuesday night to have his counts checked and make sure he wasn't getting any infections. Everything was clear and he was starting to get anemic (sp?) but counts weren't low enough for a transfusion so we were sent off with a nice diagnosis of "irritability"!

We rescheduled his clinic for 10:45 Thursday morning figuring he would be ready for a transfusion by that time and sure enough, he was. After about an hour into the transfusion he started feeling a LOT better and just wanted to play! I think Will liked it because all the nurses came over and were fawning over him and how cute he was (Lukas, not Will-sorry Will, you are cute too...) but they pulled out the excersaucer play station for him and he was in heaven! He found a fun new game to play with Uncle Will.... spinning in circles in one direction and getting his line as kinked as he could so Will would have to spin him back the other direction to unkink it. He loved it! The transfusion took about 4 hours and with all the waiting that comes with these visits, we didn't get out of there until 5:15 that night. I wasn't too upset though. The blood made such a big difference in how Lukas felt. (Red blood cells for those of you wondering what exactly he got)

He's just been playing and having a good time since then. Once everyone got home from work and school yesterday, we got to take Theron out and get our Christmas shopping done. It was nice to get Theron out of the house again with Mommy and Daddy for his own special time. Theron is getting a new molar in too! A "colar" as he calls it.

As we get into the Christmas holiday, I hope that each and everyone of you that has helped us out, prayed for our family or just thought about us is blessed a million fold for your kindness, generosity and love. I know I say this all the time, but I really am speechless. I don't know what else to say, other than thank you for all that you have done. I really can't imagine going through this without your help and prayers. We are so very fortunate to have such loving, giving family and friends, and even strangers! We are blessed more than I could have ever imagined.

I know that Heavenly Father knows each of you and knows all the good works and deeds that you do for others and it's my prayer that you are rewarded with all the blessing you stand in need of and have the most wonderful Christmas holiday. We love you all so very much!

Kurt, Heather, Theron and Lukas
MacDonnell Crew

2nd Round...

2007-12-17T15:51:00.000-06:00

Well, Lukas had his second round of chemo last Thursday (12/13/07). He had 3 different drugs this time, but only had 2.5 hours of them instead of 72 hours so that was VERY nice!!! We just had a short stay at the hospital (we got home at 145am Friday morning-really short stay..) and then got to go home right away. As long as he does fine this round, we are expecting to be able to do chemo in the clinic from here on out. We will now be doing clinics once a week instead of 2 times, so our next visit is this Thursday at 1:45pm. We go up to have blood drawn to check his counts, they should be quite low which is to be expected, a quick physical and then a blood transfusion if needed. This will only be our 2nd clinical so I'm not sure how it will all work or how long we'll be there. Our first clinical was just labs and physical to get us admitted for his chemo. We also met with the opthamologist Thursday. He dilated Lukas' eyes and didn't find any damage or anything different from his visits in the hospital which is good. He can't really say if this will be a permanent thing or will go away as the tumor shrinks because he just doesn't know.

We got to be home for Lukas' 1st birthday. We ate at Spring Creek in Mansfield and had a nice little get together. Chelsea put some pics up on the blog. Then we went back to Debbie's house so Santa could make a surprise visit to the kids since Luke can't really get out to see him. It was great! Those pics are up too, by the way.

His hair is now thinning out and he has some bald spots now, his eye lashes have started thinning out too. He hasn't lost weight that we know of and he seems to have his appetite still. He is hitting what the docs call his "nater" now. It starts about 7 days after his chemo, that's when his counts drop to about nothing. The time frame is Chemo-7 days later counts drop-2 weeks later counts back to normal and next round of Chemo. He has thrown up a couple of times but we have his Zofran to help with the nausea. He is loosing his energy and is getting more fussy now too, but he does still play as much as he can.

Our next round of chemo should start January 4th so that's our update for now!

MacDonnell Crew
www.lukasmac.blogspot.com
www.caringbridge.org/visit/lukasmacdonnell

Night Out!

2007-12-16T13:15:00.000-06:00

Last night Kurt, Heather, Lukas, Beau, Marlee, Paul, Doug and I all went out to eat at Pei Wei! We love that place! Anyway, Lukas had the most fun with his food I think. He was just "shoveling" it in as fast as he could. It was so cute. Check out the one of his lap!!

Isn't he a doll!! I just love him!!

Bracelets Are Here!!

2007-12-12T16:33:00.000-06:00

The bracelets are in...... So you should all be receiving them soon!! Thank you for your patients and if you would like to try to sell any additional ones to anyone, feel free. They said when I ordered them they would try to get us a discount on our next order if we needed to order more!! So all the money raise will go to Lukas and his family for expenses!! If you have a hard time seeing it, the Blue side says Lukas 11*19*07 and the gold side says This Sucks :( They are so cute, I love them!!!! Happy wearing and supporting Lukas!!!!

When What To My Wondering Eyes Did Appear...

2007-12-12T12:35:00.000-06:00

SANTA!!! With no tiny reindeer!

Santa let the boys play with the bells.

Theron wouldn't get to close. He had his eye on him the whole time.

Lukas was so cute, he cant see so he actually sat on Santa's lap. After a few minutes he got fussy, but he did good.

So our mom (Debbie) arranged for Santa to come and visit the kids. They are all scared of him, so none of them would go very close to him. Oh well, Santa gave them all "Christmas Bears" and told them to sleep with it on Christmas Eve and it would help them sleep. It was a nice surprise! Its kinda sad this Christmas with Lukas being so sick, but the faith that we all have in our Heavenly Father and his Son Jesus Christ has helped us to stay positive and know that everything is going to work out okay!! I'm thankful for the gift that we were given to celebrate this Christmas Season. I'm thankful for each and every one of your prayers on behalf of Lukas and his family, and I know Kurt and Heather are too. Thank you Thank you!!

Lukas Turned One!!

2007-12-12T12:00:00.000-06:00

Little Lukas turned One yesterday!!! He was so cute. He wasn't feeling very well some of the time, but he still tried to have fun. He got some fun toys and some clothes. Most everyone was there and we had a great time!! We ate at Spring Creek Barbecue, Yummy!!!! Then Lukas opened his presents and we had yummy cake!!! Fun times had by all!!!

Home at Last!

2007-12-09T21:23:00.000-06:00

WE ARE HOME!!!!! Lukas got discharged from the hospital today around 3ish after he finished up his antibiotic today. It felt SOOO good to get out of there after 3 weeks!!! We now have another few changes to our game plan as well.

We are going to be eating dinner at 6:30pm on Tuesday at the Spring Creek in Mansfield (off 287) If you would like to come out and join us for Lukas' birthday dinner, we'd love to see you! We'll be there from 6:30 till 8pm. His counts are back to normal, but if you aren't felling completely well know we love you and we'll see you when you are feeling better. We'll still be around!

Chemo: We are now going to start his next round of chemo on his 21 day mark which will be this Thursday. We are going to go in for his optometrist appointment that morning and then be admitted to the hospital for the night. We are going to start his chemo Thursday and then stay through Friday to see how he reacts to this new dosage. If all goes well, we will be able to go home Friday and then only have to go into the clinic for the rest of his rounds of chemo. We are hoping this is the case!

I guess we shaved his hair for nothing! It hasn't started falling out. His eyelashes are starting to fall out though which has been really bothering him. He has been rubbing them so much that he has bruised his left eye. The doctors took him off his fluids last night and didn't give him any nutrition so when he woke up this morning he was hungry! He ate a ton of Cheerios and Teddy Grams. He is drinking a little, but we'll work on that. He hasn't had to have too many doses of pain meds either which is good to see. So all in all, I think he's been doing really well. Much better than Kurt or I expected.

We appreciate all of your prayers and gifts and support. It has made a world of difference for us and I'm sure it will continue to be a great help. We really know how much we are loved and cared for and are so grateful for that!

Love, us
MacDonnell Crew

Lukas Update 12707

2007-12-07T23:33:00.000-06:00

It's been a really good last couple of days! Lukas has been feeling up to playing and laughing! He hasn't had any morphine since Wednesday morning and has only had a half a dose of Tylenol/Codine (because he spit most of it out!) this morning. He just had some regular Tylenol and that seems to be doing the job.

Lukas has been on nutrition (through his IV) the last couple of nights since he hasn't really been eating. Dr. Eames is hoping that once he is off fluids and nutrition he'll have more of an appetite since he won't feel full all the time. I hope so too. It's hard seeing him not eat or drink much.

So here is the latest news..... We are going to do 8 rounds of chemo (so 7 left to go). Our doctors feel very uncomfortable going into resect the tumor in Lukas head because of where it's located so they are hoping to shrink it away or at least enough that it's a LOT easier to do surgery on. That's perfectly fine with us. The tumor is in the bone, has a lot of blood supply and is surrounded by soft tissue and the adenoids. I am not a doctor, but that sounds pretty dangerous to me!

Lukas counts are back up to normal so we are still on track for our next round of chemo to start on the 18th. Because we are doing a different set of drugs for this round, we are going to try and do it in clinic so we can go home after an 8 hour hospital day. I think we'll have two of these in a row and then just clinic visits until the 3rd round. The doctors want to make sure he is really hydrated so they'll be pushing fluids while he is doing chemo. As long as he reacts fine, then we won't have to stay overnight.

The docs are all hoping that once the tumor shrinks he will get his vision back. The neurologist and opthamologist both say that things look good from their prospective so they are thinking it is just the tumor that is causing problems. Dr. Eams hasn't had any of her patients have this kind of problem, so she said we'll just wait and see how things happen and hope that it is the tumor causing problems as the other doctors think.

We'll have more CT's and MIBG's in between the chemo to see how the cancer is reacting to the treatment, but I don't know if those are scheduled yet.

I feel like I am forgetting something so if you have questions, just ask!
MacDonnell Crew

For Your Pleasure!

2007-12-03T22:37:00.000-06:00

Lukas wasn't having a very good day today. He has been in a lot of pain the last couple of days. They were getting ready to send them home, but he just cant seem to make it without the morphine. The doctors were trying to wean him onto Tylenol-codine, but that doesn't seem to help him. Lukas has also gotten what they call Mucusitus. I'm not sure how to spell it. They say its common when you are on Chemo. He just has a lot of mucus coming out of his mouth, and they sometimes get little sores in there too. Lukas doesn't have any of those as of yet. So he is still trying to just push through it, but its hard on the little guy.

Today I was able to play with Lukas a little. He is so sweet. The poor baby cant see, and he doesn't feel good at all, yet he just wants to be normal. These were taken a little bit after the morphine kicked in, so he was able to play for a little while.

This picture, I was holding him and Kurt was playing with him and he was smiling. Its been so long since he has really smiled a lot, so it was so sweet and wonderful to see.

I always forget that you cant rotate a video, so sorry you will just have to tilt your head or something, but its worth watching. Its not so often that he is up and playing and talking so you just have to take what you can get. He was so cute, I was having so much fun playing with him. Hes a doll!!!!!!!

Wonderful News!!!

2007-11-30T00:30:00.000-06:00

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

2007-11-28T13:55:00.000-06:00

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!!

2007-11-28T12:09:00.000-06:00

Here's the whole gang!!!

Therons Birthday!

2007-11-28T10:32:00.000-06:00

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!

2007-11-27T09:20:00.000-06:00

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

2007-11-26T11:45:00.000-06:00

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!

2007-11-26T11:35:00.000-06:00

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!

2007-11-26T11:28:00.000-06:00

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

2007-11-26T11:26:00.000-06:00

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

2007-11-26T11:24:00.000-06:00

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

2007-11-26T11:22:00.000-06:00

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

2007-11-26T11:15:00.000-06:00

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 :(

2007-11-26T11:09:00.000-06:00

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