Lukas had his pic line removed from his arm today !! He was very nervous about removing it. It has become natural for him to have a line in his body and he also knows this means pokes when he goes to doctor appointments and scans. He knows way too much for a six year old. Anyway...he started screaming when the nurse asked him to lay down and didn't stop screaming until she was done. I kinda thought he would be tougher than that thinking of all the pain he has been through. Please pray God will comfort him and spare him from worry and pain as we near the time for the IV's he needs to get for his scans on April 19th, 27th and 28th.

On a brighter note... we went to the "MAKE-A-WISH" wishing place today!! They have a beautiful brand new place near arco arena. When we walked in past the fountain we saw one thousand hanging stars from the high ceiling. Luke will have his very own star up there, forever more. They gave him a special key to keep in his pocket and they spent some time getting to know him. He drew pictures of what his wishes might look like and then unlocked a big door with his key. He entered a glowing blue room (his favorite color). In the center was a wishing well. Luke thought carefully about his wish and dropped it into the well. Suddenly the lights started twinkling and flashing the music started playing and we all danced...

Everybody yell "OFF ISOLATION ! YAY !"

Thank you for your prayers. Our appointment with the transplant Dr. exceeded or expectations. The drive was nice, the weather was perfect and Luke's doctor said "he is now released from his six month isolation period !" The results are not in from his immune study yet, but Dr. Horn said judging from his last counts, he is good to go play with other kids and be outside without a mask on. Upon receiving results we will know how relaxed we can be. I'm not sure if we will ever be very relaxed about germs. Germ-a-phobia is pretty much part of our life now. We even have one of those hospital hand sanitizer machines at the front door! lol. Anyway...after Luke's appointment he wore his mask through the hospital out to the car and we headed over to a fancy bakery near the hospital where Mike's cousin Lynn works. We told Luke he could take his mask off to eat! He seemed little nervous (or maybe I was) but he quickly felt comfortable when Lynn brought him a big beautiful piece of quiche and a banana cream pie! We stuffed ourselves with yummy treats and headed over to have a tour at the "Mythbusters". Mike worked for the discovery channel show while they filmed in Ione last month and they invited us to stop by. We had a fun tour and got T-shirts !! A lovely day of celebration :) Thank you Jesus for your many blessings :)

Immune Study 3/10/2010

Hello to all !!

I just realized it has been 3 weeks since my last post. Sorry. Where did the time go? After many calls and a little frustration UCSF finally reviewed Luke's scans and compared them with all his other lung scans and they are still seeing some tiny 3mm nodules. They said it could be argued that it is scar tissue, since they cannot tell the difference (in a C.T. scan) between fungus and scar tissue . In the end, they felt it would be less risky to just continue his oral medication for another three months and scan again to make absolutely sure. Fungus can take a long time to kill completely.

We are headed to San Francisco Wednesday morning (8am appointment ! trying to get over the bridge before the traffic) for Luke's immune study. We are looking for the return of his T-cells and B-cells. I guess they are the last to regenerate after wiping out the bone marrow. The test takes a couple of weeks for results. So we are praying Luke's immune function is fully restored and he will able to play T-Ball soon. Grandpa got him a new glove, bat and ball and he has been practicing a lot.

Still Don't Know ?

We are still awaiting a call from UCSF on Luke's follow-up scan for his lung infection. His Oncologist here in Sacramento said it looks stable meaning no change since his last scan I guess. We were told that there will probably be scar tissue left behind, so hopefully that is what they are seeing. I will let you know when we find out more. We just finished making some beautiful valentine cookies and the kids are having fun passing around their valentine cards. Mommy has already eaten to many cookies and is now trying to talk herself into getting on the treadmill ! Wish me luck. lol

February...Wow !!

Time is just flying by isn't it? I got a call during our very big and successful yard sale from my friend Nichole. You might remember back during Luke's transplant we met Nichole and her family at the "family house" in San Francisco. Their daughter Layla was undergoing radiation after having a relapse of neuroblastoma almost a year after her transplant. Upon follow-up scans they discovered Layla's neuroblastoma was spreading to both her liver and lungs. Nichole told me she passed away on Monday at home in her bed... she was six years old. Layla was a beautiful little girl and we will always remember our short time with her. Mike and I are heartbroken for Nichole and Dennis and also for Layla's four year old sister Ruby, two year old brother Eli and baby sister Josefina. Nichole said she can close her eyes and see Layla running in heaven with sparkles all around her...and she knows all her pain is gone. The Lord brings great comfort in his promises.

Luke continues to do really well. We went to Sutter Memorial to have another c.t. scan of his lungs yesterday. Don't have results yet. We will go back to UCSF March 10 to check his immune system. Hopefully he will be off isolation! Please continue to pray for Luke's healing and for our friends Nichole and Dennis.
Thank you for following our journey, it really helps to know all of our friends are going through this with us. I love you all.

Enjoying Home

We are having a great time staying home. Luke is just finishing his third cycle of cis-retionoc acid and it seemed to be a bit easier this time. His lips are chapped pretty bad but not quite bleeding and the rest of his skin is pretty good. I also didn't see too much of a decrease in his appetite.Dr.Yim assured us he would be feeling better now that his is off the fungal medicine. His second follow-up scan is now scheduled for Feb.1 .Praying for clear lungs!!

January 27 Luke will be 6 years old!! Happy Birthday Lukie!!(Mike and I got him a new blue bike for his birthday sshhh... don't tell) He is doing great with his school work lately. We are accomplishing much more now that we have not been traveling as much. He is reading now, writing and doing math. Joe and Luke are science buddies and do experiments together, and Grace is like a little teacher herself. I go upstairs to rotate the laundry and she breezes in and has him finishing his workbook pages by the time I get back (it's more fun than doing her own work). Peter is right there in the middle of it all doing his home work too. He gets very jealous "Mom.. I need help..what do I do?" Busy full days, sending them all outside with every peek of sunshine I see. ~ Love to all Erica