Friday, August 28, 2009

Livin' in San Francisco

Well, we are here in the BMT (bone marrow transplant) wing of the University Of California at San Francisco Children's Hospital. Mike, Luke and I arrived on Tuesday afternoon to many nurses all ready for our arrival. We had to go down to radiology for a chest x-ray then Luke got all washed down in the shower. All of his sanitized, packaged clothing and toys were unpacked and we were all set ! The rest of the day they gave Lukas several medications to prepare his body for the high dose chemo. The chemotherapy started Wed. morning. The first of his chemo is of the big side effects of this one is mouth soars, so they ask the patient to use special mouthwash four times a day and keep the mouth cold during the infusion to constrict the blood vessels. Popsicles are not easy to eat first thing in the morning (in San Francisco) Burr..! The other two chemos are VP-16 (aka etoposide) and Carboplatin. These two he has had before in small doses, but for high-dose chemo they run continuous for four days. VP-16 can burn the skin when it is secreted, so that means three baths a day with sterile water and soap. We are staying busy with baths and mouthwash, Luke hates Mommy has to get tough...or beg...sometimes. We have a room with a view of the ocean and a Wii full of games though, that helps. They said we may be moved into a less appealing room at some point so we better enjoy it while we can. Luke and I turned off all the lights in our room last night and held each other while we watched the ships on the water and the twinkling lights of the city...sweet.

Saturday, August 15, 2009

On the up swing !

Mike arrived at the hospital after work yesterday evening with his bag packed to spend the night with Luke. I picked up Joe, Grace and Peter at my Dad and Mom's. As we loaded up into the mini van Peter hit Joe in the eye with his Little mermaid toy and of course there was all kinds of screaming and carrying on. My Dad said "Probably makes you want to go back to the hospital". Everything was fine by the time we got home, a block down the street.

I wanted to say a few Thank yous, first, to our friend Olivia Crocker for all the meals and treats you have been bringing us for the last...I don't know 6 months...we have been doing this now...I lost count of how many meals, we really appreciate your generosity. Also, thank-you to Manny for the Denny's meal you brought us (yummy), and Chris Smylie for the beanie you knit for Luke, he's wearing it right now! (I will try to post a picture soon).

Luke and Mike got news late this afternoon Lukas needed both a platelet transfusion and red blood cell transfusion. He had some benadryl before his platelets and took a nice nap. He is awake now eating goldfish and watching The Iron Giant (Thank you to the Dean's for the new movie) and his red blood cells are all done. Daddy is on his way home. Dr.Yim said he thinks Luke is on the up swing because his white blood cell count is 0.2 ...guess it's better than nothing.

Thursday, August 13, 2009

Tired of this hospital stuff...UGH !!!

Well I guess I wasn't talking to myself. Turns out many people do read this, they just don't post comments. Okay...I feel better now. Except for the fact we just found out one of the first kids Luke met at the hospital just went to heaven this morning. He passed away in his mothers arms. Luke and I talked about it and prayed for his family. Joshie had the same kind of cancer as Luke, which makes the Nelson family's loss really hit home for us.

We have had a busy week. Monday clinic visit, Tuesday blood transfusion, Wednesday Meeting with Radiation Dr. and G-CSF shot at the hospital. Now it's Thursday and Luke woke up with a hurt foot and a fever. He had problems with his right foot hurting after his surgery and a few times since then it has bothered him. This morning however, he wanted me to carry him downstairs because it was hurting him like pokes in the bottom of his foot. His fever was at 101 and he was not very happy about going to the hospital. He had a clinic visit scheduled anyway so I just packed our things, figuring we would end up in the hospital again. we are in 662, whoo, hoo. Luke has spent much of the day with a blazing hot fever in and out of sleep and complaining. He did have a repreive from the fever for a short time he played on the computer and a little x-box, but he was kinda dazed. He is on his second dose of two different antibiotics and Tylenol, but his temperature was still at 102. His ANC is at 0, he had an x-ray of his foot and a CT scan with contrast(had to drink the nasty stuff again) and he still had to have another G-CSF shot to top it off.
We are getting weary, the hospital is getting so familiar there is no excitement anymore. We have played with all their toys, watched all their movies and earned every prize from the prize box. I had to give Luke a couple pep talks today, it's getting hard to cheer him up.
I am praying this is just another virus like the times before. But the fact is, if this is an infection we may be here ten days. Boo Hoo. I just reached over and touched his head and it feels much cooler...Sigh...I'm giving my self a headache. I know it's gonna be okay...calm down Erica. Like I have been telling Luke, we are fighting a battle, we can't give up. The nurse just walked in and took his temperature...99..phew...that's better...keep it up Luke...I mean down. I will try to give everyone an update tomorrow, hopefully I will have to tickle and pry the computer out of a happy little boys hands to do so.

Tuesday, August 11, 2009

Blood Transfusion Today

Went to Clinic yesterday to check Luke's counts and found he needs a hemoglobin transfusion. They let us take him up to the outpatient floor to get a "type and cross" so they could order the blood and have it ready today. Having that done should save us about an hour of waiting! He will also start getting those lovely shots that help his ANC count rise. Gracie has a little cough and a stuffy nose so she has been stuck in her room the past couple of days, I'm praying no one else picks up her cold. I'm starting to wonder if I am boring all of you with my long winded post's, maybe I should be more short and to the point. Nobody is posting comments anymore. lol. ~Erica

Thursday, August 6, 2009

Coming Soon~Transplant Date

Luke just finished his favorite "green juice" it's called greens to go, a veggie drink mix, and he ate two crackers. I think that will be all I will be able to get him to eat for lunch. He said "mommy, you know that water that comes out from under you tongue? mine tastes funny". The cytoxan is known to cause a metallic taste in the mouth. I got him some fruity gum, that seems to help.

We are scheduled for Aug.19-20 to have some tests at UCSF to prepare for Stem-Cell Transplant on Aug.24 ish. Of course it depends on his ANC count and all his scans will have to be done again. Mike and I are praying this will happen in God's perfect timing. The number of tumor cells in Luke's body is unknown to us, but The Lord knows every cell in his body, we must rely on Him.

Tuesday, August 4, 2009

Home sweet hospital :)

We're back. Five more days of chemo. Luke is feeling a little grumpy and sick to his stomach. Praying God is continuing to rid his body of this nasty cancer. Good nurse...bad roommate...I guess that's better than the other way around !