Lukas Benjamin

Conquering Neuroblastoma

“Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain.”
President Gordon B. Hinckley

Monday, December 8, 2008

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!!

Wednesday, November 19, 2008

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!!

Friday, July 4, 2008

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!!!

Wednesday, April 9, 2008

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...

Thursday, April 3, 2008

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.

Sunday, March 16, 2008

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!!!

Thursday, March 6, 2008

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.

Monday, March 3, 2008

Stem Cell Harvest Update

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

Wednesday, February 27, 2008

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.

Monday, February 25, 2008

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 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.