Wednesday, June 24, 2009

Home At Last !!

It's good to be home, although as I was getting on the elevator on the sixth floor I glanced down the hall and got a weird familiar feeling, I'm getting to know the place pretty well. Luke is really glad to be home too. He is improving daily, walking better, eating better, and needing fewer doses of Tylenol. We are scheduled to go back to the doctors on Tuesday.

Saturday, June 20, 2009

Post Surgery Update...Saturday

Recovery...such a soft word for such a hard thing. It has been a constant battle to keep Luke's pain under control, I have never been such a basket case. Lukas was crying to go home and missing his brothers and sister sooo bad, his body has been hurting more than I can even imagine. He was refusing morphine, saying "It dooossnnn't work!" so we got him on some other pain medicine that seems to be much better. He has really bad swelling in his tummy. His hemoglobin dropped and he had a blood transfusion, then the next lab work showed a drop again. I was in a panic, thinking he was having internal bleeding that would require another surgery. The doctor had them draw labs again to make absolutely sure and by the grace of God his hemoglobin was back up. That made the "worst days of my life" list.
Mike spent the night at the hospital last night so I could come home and sleep in my bed and wash clothes. I called him this morning a he said "Luke got to eat Cheerios's!" This it the first time he has eaten since Monday morning before going to the hospital. Luke is also getting a visit from the Star Wars characters today! We are praying for more good days to come, hoping to have Luke standing up soon maybe taking a few steps...That will make the "happiest days of my life" list.

Wednesday, June 17, 2009

Bye Bye Tummy Bump !!!

WOW...Everything that has happened in the last few days just went rushing through my head as I stare at the blank screen wondering what to type. All I can think is PRAISE GOD..PRAISE GOD..PRAISE GOD..Thank You LORD. Luke is in Pediatric Intensive Care (PICU) getting lots of rest, and we are silently celebrating the entire removal of the big pink blob from his abdomen.
Our prayer was for the tumor to be removed totally in one big hunk, with minimal blood loss and no damage to his surrounding organs and that is just what God did! How is Thank you a big enough word in a time like this?
Luke's surgeon, Dr.Lisa Abramson, is beaming, she said, "The surgery went perfectly, we identified the feeding blood vessels as we went along... we didn't even have to give him a blood transfusion."
Lukas already has the tube out of his nose... and you probably guessed it... he ate a half of a Popsicle already! His pain has been pretty well controlled, a nurse tried to roll him onto his side yesterday and he reached up and pinched her! That was pretty funny.
Now the tumor is off to pathology. We should know the weight of it, and all the info about the cells within it, in about a week. We are praying for an infection free recovery and that this will be the end of treatment for Luke. If the cells are fully matured, essentially dead, he will not need any more chemotherapy! That would be a dream come true! A big giant THANK YOU, friends and family, for all your prayers and support. We love you.

Friday, June 12, 2009

Surgery Date Changed

I Got a call yesterday from Luke's doctors. Apparently their is a chemical in Luke's urine that comes from the ganglioneuroblastoma. The numbers were slightly elevated, not what we want to see. They thought there should be no reason to wait any longer than we have to, to remove this tumor. The Surgeon changed her schedule and gave up her day off, but is glad to do it for Luke! (we really like her a lot). So, my stomach hurts and my heart is swollen, but this is God's plan, not mine, may his will be done. Luke is comfortable with the whole idea, he knows all about the plan. His biggest worry was the tube in his nose he heard Dr. Abramson talking about. He wondered what big brother Joe would say about that when he got home. He calmed down fast when I told him he didn't have keep the tube in. "The doctors will take it out as soon as you start eating" I said. He said "I will eat anything I have to, to get the tube out" ...a good incentive I guess.

Admit to Sutter Memorial- Monday June 15
Surgery- Tuesday June 16

Wednesday, June 10, 2009

The Good News and The Bad News

Yesterday Mike and I met with Luke's surgeon Dr. Abramson. The good news is she is ready to remove Luke's tumor, the bad news is the tumor is still the same size...actually a few millimeters larger than at diagnosis. This was very disappointing news because I really felt from the feel of his tummy the tumor was changing. They warned us from the beginning this may be the case (little to no shrinkage), but they had to try chemotherapy before moving forward with surgery. The surgery will be 6-8 hours long...I'm trying to hold back tears just writing this...I'm so glad he is having it removed but so wishing I could go through it for him.

Today Lukas had his MIBG scan. He had to have the sleepy medicine again. He was goofing around messing up my hair, right up until he fell asleep. He's such a champ. Or as Mike called him, a superstar!

Admit to the hospital -Monday, June 22
Surgery -Tuesday, June 23

Monday, June 8, 2009

Remove the "Tummy Bump" ???

Mike, Luke and I are going to the Clinic tomorrow to meet with Luke's Oncologists and his Surgeon. After reviewing Luke's C.T. Scan they believe it is time to remove the tummy bump !!! Yippee!!! We will get more info tomorrow to share with all of you, our faithful prayer warriors ! Isn't God AWESOME !!

Tuesday, June 2, 2009


Clinic visit this Monday revealed Luke's counts are still going down, his ANC is 400 and his platelets are really low again. We are watching for any signs that he may need a transfusion. He has a C.T.Scan scheduled for Thursday June 4th. Next week he has a MIBG scan with the sleepy medicine. The worst is he has to fast before the tests and for some reason they always schedule them for the afternoon...drives me crazy! Luke didn't complain a bit last time though, he's much stronger than I am, thank God.

Luke is amazing...wakes up every morning ready for cereal..plays all day like there's nothing wrong ...prays every night that God will take away his tummy bump...and knows He will !