Merry Christmas!!!!
Today will be a tiring day for my little guy. He had his last appointment on this last Friday and it was the beginning of a new phase. They have put him on steroids again. It is a higher dose each day but only seven days this time followed by seven days off then another seven days on. I am not sure how much weight he will gain this time but at least he will be able to enjoy all the Holiday food. He also had a spinal tap on Friday and it did come back negative for cells in his spinal fluid. He had Vinchristine in his port IV and a new Chemo they nickname the "red one" because it is red and can make Ben's urine turn red. When we warned him of this he looked at us like we were crazy and informed us his is yellow. But since then he has been joking with us that his pee is blue :) He had another appointment today to recieve one more Chemo Drug called PEG. They did this once before when we were in the hospital and this is really not a fun process they have to inject this into his thighs with big long needles. It hurt him really bad and last time he complained of pain in his legs for a few days. Ben(big ben), Val, and Baby Jack got here yesterday and Sean, Jo, Emma, Gabe, Chloe, and Baby Logan will be here late tonight, we also get to have Suvanna with us on Christmas Eve.
Matt's parents will be here today also and they will be staying nearby for a couple of days. We are thrilled to have all our people around us for Christmas!!!! Ben and Olivia are thrilled to have both their grandparents around to spoil them rotten :)
Ben will be having another appointment on Monday to continue this next phase. I think that this is the last phase before maintenance but we will have to see. Once he reaches maintenance he will have steroids on the first five days of each month for the three year maintenance.
Merry Christmas to all of you!!!! We miss you so much especially during this time of year. Thank you for all your Christmas cards!!! Thank you for the blessing of your prayers. We would not be doing well without this support.
Love
Jamie
Tuesday, December 22, 2009
Saturday, December 5, 2009
Ben's First Appointment in Kentucky
The kids and I have made it to Kentucky and we are doing well!! We were blessed to be able to go to Aunt Pam's for Thanksgiving and see everyone before we left. I was sad to say goodbye to everyone but I can now be excited about coming back for visits.
Matt is still in phoenix but he will starting his drive with Daniel on Monday. They are going to make the drive faster than Dad and I did with the kids so hopefully we will see them tuesday night or wednesday morning!! The kids miss Matt like crazy and so do I but we are keeping them distracted with many other things to do around here.
Ben had his first doctor visit at Kosair yesterday. Kosair is two hours away from Dad's house and is also in a different time zone so we had to get up at 4:30 our time to be there at nine o'clock at Kosair. Some of Ben's treatments will be very early in the morning because they will take so long to finish so sometimes we will go there the night before treatment and stay at the Ronald McDonald house. This is an amazing blessing and only seven dollars a night to stay.
I liked the staff at Kosair and so did Ben. He was tired from the trip but he did really good in the office and is such a good boy. There are some differences in his treatment here but we were warned that every doctor does things slightly different. Some of the differences we were happy for and some of them we are not sure what we think but we will be calling our doctor in phoenix to see what they think of these changes as well.
Ben tolerated this treatment well so far but it seems that the timing is that he will start feeling bad tonight or tomorrow morning so we will pray that this won't happen but prepare for it just in case.
We love you all and miss Phoenix already!!
Jamie
Matt is still in phoenix but he will starting his drive with Daniel on Monday. They are going to make the drive faster than Dad and I did with the kids so hopefully we will see them tuesday night or wednesday morning!! The kids miss Matt like crazy and so do I but we are keeping them distracted with many other things to do around here.
Ben had his first doctor visit at Kosair yesterday. Kosair is two hours away from Dad's house and is also in a different time zone so we had to get up at 4:30 our time to be there at nine o'clock at Kosair. Some of Ben's treatments will be very early in the morning because they will take so long to finish so sometimes we will go there the night before treatment and stay at the Ronald McDonald house. This is an amazing blessing and only seven dollars a night to stay.
I liked the staff at Kosair and so did Ben. He was tired from the trip but he did really good in the office and is such a good boy. There are some differences in his treatment here but we were warned that every doctor does things slightly different. Some of the differences we were happy for and some of them we are not sure what we think but we will be calling our doctor in phoenix to see what they think of these changes as well.
Ben tolerated this treatment well so far but it seems that the timing is that he will start feeling bad tonight or tomorrow morning so we will pray that this won't happen but prepare for it just in case.
We love you all and miss Phoenix already!!
Jamie
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