Saturday, March 28, 2009

Bye Bye Luke's Hair

We had a fun day outdoors today. Grace had her first softball game (she's the cutest one on the team!) and Mike and I played in a softball game for our church league. We we're all winners! On the ride home Luke ran his fingers through his hair and his hand was covered in hair. I guess its time for a buzz !
Luke is feeling good, tired at times, but eating well and playing well. His second round of Chemo starts on Tuesday. We check in at the clinic at 10:30am and go straight up to the sixth floor for two days this time.

Friday, March 20, 2009

Clinic Visits

Luke is feeling good and eating well. He has been driving me crazy this week asking to play video games all the time! I guess he is developing bad habits from his hospital stays....oh well...if that is the worse side-effect we've got it made !!
Every Monday and Thursday we are scheduled to go to the Oncology clinic for check-ups and blood work. This weeks appointments went well. Luke's ANC ( absolute neutrophil count) is the most important number to monitor, the neutrophils are the bactiera fighting white blood cells. These white blood cells are on a steady decline. When they reach there lowest ( between 7 and 10 days after treatment) he is most prone to infection. The counts are expected to rise back to almost normal before the next treatment. He was at 2300 on Monday and by Thursday he was 1000. The Oncologist say if the ANC count gets at or below 500 they routinely admit the patient into the hospital until their count rises.

Cycle number two starts on March 31, the medication is a little different this time, we will stay at the hospital 2-3 days. Thank you for your continued prayer :) Mike and I really feel God is at work in Luke's tummy !!

Wednesday, March 11, 2009

March 11,2009

Well, where should I start ? Yesterday went just fine. After check-in to the hospital (we got a bed by the window!) the nurse started Luke on fluids because they need four hours of hydration before starting Chemo. Then Luke climbed into a little go-cart and our Nurse, Mom and Dad all went for a trip to the audioligist. One of the side-effects of one of the types of Chemo is hearing loss (high pitched sounds... like Mom's voice, LOL). That was fun, we all got into a sound proof booth, Luke had on headphones and everytime he heard a sound he put a plastic dinosaur in a cup. He passed with flying colors, so back to our room. Daddy went home later in the afternoon and the first Chemo IV bag hung high on what Luke calls his "Buddy"(the IV cart). That was non-eventfull, he felt fine over the next hour, then came the second type of Chemo, with the same results! Good news, no nausea or anything:)
This morning Luke watched cartoons and ate cherrio's with rasins and bannanas. He had to go pee-pee a lot with all those fluids pumping in ! Then at lunch we has visitors ! Auntie Jennifer,Veda,Joseph and Gracie came full of smiles out of the elevator. After we ate our lunch we all headed down the hall to the playroom. Luke pushed his "buddy"swiftly down the hall, excited to show the kids his special place to play at the hospital. And play they did. I had never seen the playroom get so much use! We had out games, tractors, blocks, puzzles, all kinds of stuff, Lots of fun. This session of Chemo was only one medication, it ran for one hour and that was it. Luke didn't want dinner at all. He didn't eat any of his lunch either. The nurse said that's pretty tipical. He got a little fiesty near bed-time when I changed his bandages on his broviac. It was red and irritated the nurse said he might be allergic to the tape or cleaning solution we are using. We tried a different type, now we will pray it looks better in the morning.

Tuesday, March 10, 2009

First round of treatment

Last week we had our first meeting with the oncology department at their children’s clinic. Luke’s diagnosis for the most part is the same as we’ve known already. He has ganglioneuroblastoma, stage three, intermediate risk. The doctors showed us a big flow chart that basically describes protocol for treatment based on factors that have come about with the results of his tests. So at this point his basic treatment will be four cycles of chemotherapy, followed by a revaluation of the tumor. The cycle is roughly 30 days. The first cycle starts today. It will be three treatments over three days then, 22 to 28 days off. Luke only has to have the medicine run through his IV four an hour. He will most likely have to have two trips a week to the hospital to have his blood count taken.
The problem in diagnosing his tumor lies in the fact that it is a mix of cancer and benign cells. They’re not able to tell us a percentage, like 30% benign and 70% cancer. Chemotherapy shrinks cancer cells but not benign cells. So we will have to wait and see how much of the tumor shrinks. This will be followed by surgery to remove what’s left.
Sorry if the blog seems to jump around from topic to topic, or if there are still some unanswered questions. We have received so much info over the past month, that at times it is hard to keep it all straight. Also, we apologize for the speed of getting info up on this blog. Sometimes it seems that the days just aren’t long enough to finish everything, but be patient we will keep it updated. If anyone has any questions in particular or something that does not sound right feel free to ask in the comments. We will try to answer it the best we can. Or if you just have any random things you would like to ask of Luke, I’m sure he will have an answer for you! J Once again we want to thank everybody for their faithful prayers for Luke and for our family.

Wednesday, March 4, 2009

MIBG scan

Luke had a MIBG (iodine meta-iodobenzylguanidine) scan today.

His test went well, about the same as the bone scan. He woke up and remembered the nurse had Popsicles :) Tomorrow we will meet with the Oncologist. Hopefully we will have more news soon!


Monday, March 2, 2009

Praise The Lord !!

Today we got a wonderful phone call. The bone scan revealed Luke has healthy bones! All the kids cheered when I told them the news !!