December !!

I can't believe it is December already. Luke is now three months post transplant...half way to freedom. In March he will be off isolation !! Yesterday Luke had a follow-up C.T of his lungs and we are praying hard he will not need a lung biopsy. His blood pressure has been good and we are keeping his potassium and magnesium under control (he still hates taking the pills). The new medication he has to be on is worse than I thought it was going to be though. It is just like being on chemo. His appetite has decreased he's been a little tired and his skin is awful dry, cracking and bleeding (even his private areas...poor baby). He just finished two weeks of it and now he has a two week break. That will be the rotation for the next six months. He is going through a little funk about going to the hospital and clinic...he is sort of mad...and sick of it all. We need to have a few more long talks about being a shining light for Jesus. It's a long road to travel, but looking back it seems to have gone by pretty quick, just taking it one day at a time. We will go to UCSF probably on Tuesday to have a check-up with the Bone Marrow Transplant doctors.

I hope you all had a wonderful Thanksgiving. Mike and I made a lovely dinner...we used our china (first time ever!) and the kids made a pumpkin turkey center-piece. We all told the Lord all the things we are thankful for. Luke was thankful God healed Joe's poison oak and for helping him with his tummy bump. We had a great time together :)

Fat Lip

I followed Luke around like a mother hen yesterday while he rode Joe's scooter. He was having a great time...until...one little turn and....smack !...he hit his mouth on the handle. He was wearing his mask, so at least it was a clean hit, but his lip is huge. It is never fun to see your kid get hurt, you feel worried and guilty, but when your kid who just had a bone marrow transplant gets hurt, yikes, it's like magnified like 100 times. I was really freaked out. I'm so worried about infection right now and the mouth is so full of germs. I called his oncologist right away to see what I should do and they said "ice it and rinse his mouth every time he eats...that's all you can do".

Today, Luke, Grace, Pete and I left for Sacramento at 7am and we just got home at 1:45 pm. Everything went well. Luke's potassium level is good and his blood pressure was fine. One hour of normal saline and two hours of Amphotericn then more fluid. He is tolerating it good so far:)

We made some friends in San Francisco during Luke's transplant who's daughter Layla was diagnosed with the same cancer as Luke, stage three and everything. She had a relapse nine months after her transplant. They traveled to San Francisco (from Arizona)to have the new tumor removed and now just found out Layla has more cancer on her liver and in her lungs. I am broken hearted for them :(

Go Away Infection !!!

Well the decision has finally been made to go back on I.V. anti-fungal medication. Luke will receive a double dose of what he was having before but only two days a week. We went for his first dose today and everything went really well. They wanted to pre-medicate him with benadryl and zofran because the dose increased so much but I opted not to. I guess that was a good choice because he was just fine. No problems what-so-ever ! Yipee. They want to repeat his C.T. scan before Thanksgiving and If they see more infection they will have to do a lung biopsy:( I'm praying hard this will not be the case. Go Away Infection!!

Luke will also be starting a medication called Isotretinoin. This is known to help fast dividing cells quickly mature so if they are cancerous they become benign. He will have to take four pills a day on a two week on two week off schedule for six months. This stuff causes most commonly skin peeling but of course the list of other possible side-effects is quite long. I hate reading all that. I'm just thankful God is in control of all this. Mike had to remind me of this today because I was starting to get depressed and stressed and grumpy...he texted me... "Just don't forget who's in charge of the universe".

Radiation Complete !!

Luke wore his UCSF hospital scrubs to his last treatment of radiation today ! It was a good experience all in all. The doctor and nurses were all very friendly and never kept us waiting. Luke's treatments were fast and he had hardly any side-effects, PRAISE GOD. The Grandma's were really wonderful !! Grandma Suzi and Grandma Kay traded off coming over to our house to watch Joe, Grace and Peter. It made it really easy on Luke and I to hurry off to treatments and come right home without having to make any stops. Thanks Grandmas :)

The bad news is....Luke had a follow-up C.T. scan to check the condition of his lungs. His medication was changed to a single anti-fungal medication he has been taking orally at home for two weeks. The C.T revealed the original growths were a bit smaller but there are a few new larger growths. So... the doctors are a little confused right now as to when these new growths occurred. Fungal infections are very dangerous and I'm really praying for God to do another mighty work in Luke's body. I know his power never runs out ! Please pray with us, we are headed to see doctors in San Francisco tomorrow morning.

We watched a documentary on the San Francisco earthquakes last week and I told Mike "We are not going over the bay bridge next time we go to UCSF" and I guess nobody is tomorrow. The news said they had to close it after a cable broke yesterday! Funny.

Radiation

I can't believe it has been two weeks since my last post. Sorry, I haven't been good about keeping you all up to date. Its been a busy time around here. The trips to the hospital to have infusions of anti-fungal medicine stopped! Praise the Lord. Luke's blood pressure was getting high and he was loosing a lot of potassium with that stuff, so I was glad for many reasons to be off of it. They found an oral medicine that is suppose to work four times as well. I hope they are right. We will soon find out when he has his next C.T. scan next week...Praying for healthy lungs.

Friday, Mike and I took Luke to get lined up for his radiation. He got five real tattoos on his tummy and a little mold make of his body so his position is the same every treatment. The first treatment went well yesterday and today was actually pretty fun...after his treatment they let him play with the remote control that makes the machine spin around. It's really neat. When the machine rotates, the floor drops down and lights up! The radiation therapists adore Luke. They watch him on a t.v. screen during his treatments and today he had them all giggling. He was looking at his reflection and making silly faces the whole time.

Lukas has been feeling better everyday, more energy, eating better, and not as sensitive to smells. Then today the smell of dinner started to make him sick, and he was too tired to walk upstairs at bedtime. Bummer. They said to expect side effects similar to those of chemotherapy. He will have a total of twelve radiation treatments, Monday through Friday, weekends off. The last treatment will be on the 28th. He is also still on overnight hydration, they say probably a couple more weeks before we can take him off that. It's not that big of a deal , but he has to get up to potty a lot in the night.