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

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

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