Yesterday we went to Ben's Clinic appointment and started the next phase of his treatment. As long as Ben's ANC's stays above a certain level this phase should end mid-february. After February he will be in his maintence phase and we will be to point of going about once a month.
This new phase includes two different chemo drugs given through his IV port every ten days. They will test his liver and kidney's each time before administering these two drugs. He will also need IV fluids for one hour each time so our Doctor Visits for the next months will last about 3-4 hours unless ben needs blood transfusions then they will last 6-8 so we are hoping his blood levels continue to stay up in the good numbers.
I feel weary this week. I am trying to find time to rest while continueing to get everything done. I went to the zoo this morning with Stephanie and it was a lot of fun to get out of the house. We probably won't be able to get out of the house in the following weeks so we wanted him to do some fun things this week.
We are hoping that Ben's counts are high enough that we will be able to spend Thanksgiving at Aunt Pam's house. We have a Doctor's appointment the day before Thanksgiving so we can find out where his ANC's are but they are telling us to expect that from about mid next week to mid-february that it will be more rare to get to do anything out of the house so we are glad that we have been able to go do a few special things with him.
We love you all and we are so grateful and blessed for the prayers and the support from everyone.

Jamie

Wednesday Night

Hey everyone,

We went to the E.R. at PCH last night. Ben is going to have an M.R.I. sometime in the next two weeks. We noticed yesterday that his eyelid is drooping on his left side of his face. We don't really know much yet but they said that this can be caused by lesions on his brain pushing on a certain part of his brain that controls that part of his face. This is what the M.R.I. will tell us. His Spinal Taps have been coming back negative for Leukemia cells and it is rare that leukemia would be in his brain without it first being in his spinal fluid so we are praying that it is something less serious. The Doctor also said that sometimes little kids get pinched nerves that can cause this and eventually they grow out of it. We are praying that this is all it turns out to be but we will know more when the M.R.I. is completed.

Jamie

Monday Evening October 12th

I took Ben to the Clinic today and he did well! He had another lumbar puncture with an injection of Chemo into his spinal fluid. They were unable to get a good sample of spinal fluid to be tested because he was bleeding also and it contaminated the fluid. They assured me that this happens often and will continue on the regular schedule for the next spinal tap.
Ben will get a good break here because we do not have to go in at all next Monday and the Monday of the 26th he does not have to have another Spinal tap so that is good.
His ANC was 700 so we cannot go to church again until it comes up. We did not go yesterday because we suspected that they would be low. We did get to go last week and also went to Uncle Tim's and Auntie Carol's after church. It was such a good thing to get to get out of the house and be with people we love. We do feel really cooped up here sometimes. I even got a wonderful manicure from Miss Emily Hope!!

We continue to seek God in this and rely daily on your prayers for us. Love Jamie

Become A Donor!!

I wanted to encourage anyone who has been reading this blog to consider becoming a Bone Marrow Donor!! Getting started is not a big deal you just register then they swab the inside of your mouth so they can do a tissue match! Once this is complete Doctor's search the registry for matches and if you are then they contact you for more testing to see if you are a safe match! Most Bone Marrow donations do not even require surgery!!

Ben does not need Bone Marrow at this point and hopefully never but my heart goes out to the Mom's that I have met and the Mom's that I haven't met that are watching their children die because they cannot find a donor!! Please Prayerfully consider that this small thing could save someone's life!!

Thanks

Jamie

Thursday Night

Hey everyone...Just wanted to let you know that we had to take Ben to the Emergency Room at PCH last night. At about 9:15 we got ben ready for bed and he had a fever. His temp. was 104 so I took him to the ER and they drew his blood and tested to see what his ANC's where. By the time we got to the hospital his temp was 105 so they gave him tylenol. His fever broke and all his other vitals were normal so when his ANC count came back at over 5000 they sent us home. This is a great number to see!! Ben's count is at normal levels now!! Going to the hospital and not getting home until 2:30am is not fun but at least we got to go home at all!!! His temp was normal all day today so they just want us to monitor it and watch in case it spikes again but otherwise the cultures have come back negative for bacteria or infections!!!

Love you all

Jamie