Day +180
Hello friends,
Jordan had a clinic visit with Dr. Nieder today. Everything is still looking good.
Her labs were:
WBC = 4.09
RBC = 15.1
Platelets = 318
ANC = 2,900
A couple of weeks ago the doctors mentioned they were again going to wean down the Prednisone from 15mg a day to 10mg a day. Jordan changed her dose to 10mg and started having 'cluster' headaches. This went on for a few days and we called the doctors and they asked to have her brought back in to clinic to have her Cortisol level checked.
Apparently her Cortisol level was too low, so they put her back on 15mg of Prednisone and the headaches have disappeared. This will mean an even slower weaning off the dreaded steroids so her body can catch back up and produce it on it's own. She really isn't eating very much these days and has lost about 7 pounds. Dr. Nieder says this is typcial when the steroids are being decreased. All that weight she gained while on them, will slowly start to fall off.
Today, Dr. Nieder said she can stop taking the Acyclovir and she can decrease the Lasix from 25mg to 10mg. She also gets to decrease the Cellcept from 750mg to 500mg. He was still waiting on results for Magnesium and Potassium because those doses might also be decreased.
By decreasing the Cellcept we have to watch out for those dreaded GVHD symptoms. We will keep our fingers crossed and pray they don't rear their ugly heads.
Cellcept is one of the drugs used to fight GVHD, along with the FK506.
It's good news that they are starting to decrease the meds, but it also makes us a little nervous. The meds fighting GVHD are kind of a safety net of sorts.
Jordan also received a flu shot today, her first ever.
On a holiday note, we have finally put up our Christmas tree and some lights outside. It's beginning to actually feel like the holiday season now.
Madison and Noah are both very excited about Santa coming to visit.
It's hard to believe that all of this stuff with Jordan actually started last December. Where has the year gone? Time waits for no one.
Thanks for all the prayers and well wishes. It's such a blessing to receive them all.
Please continue to prayer for Taylor. She's fighting hard.
Little Ellis lost his fight recently, please keep his mom and dad in your prayers too.
www.caringbridge.org/fl/taylor
www.caringbridge.org/mn/ellis
Lots of love,
Katherine
Hello friends,
Jordan had a clinic visit with Dr. Nieder today. Everything is still looking good.
Her labs were:
WBC = 4.09
RBC = 15.1
Platelets = 318
ANC = 2,900
A couple of weeks ago the doctors mentioned they were again going to wean down the Prednisone from 15mg a day to 10mg a day. Jordan changed her dose to 10mg and started having 'cluster' headaches. This went on for a few days and we called the doctors and they asked to have her brought back in to clinic to have her Cortisol level checked.
Apparently her Cortisol level was too low, so they put her back on 15mg of Prednisone and the headaches have disappeared. This will mean an even slower weaning off the dreaded steroids so her body can catch back up and produce it on it's own. She really isn't eating very much these days and has lost about 7 pounds. Dr. Nieder says this is typcial when the steroids are being decreased. All that weight she gained while on them, will slowly start to fall off.
Today, Dr. Nieder said she can stop taking the Acyclovir and she can decrease the Lasix from 25mg to 10mg. She also gets to decrease the Cellcept from 750mg to 500mg. He was still waiting on results for Magnesium and Potassium because those doses might also be decreased.
By decreasing the Cellcept we have to watch out for those dreaded GVHD symptoms. We will keep our fingers crossed and pray they don't rear their ugly heads.
Cellcept is one of the drugs used to fight GVHD, along with the FK506.
It's good news that they are starting to decrease the meds, but it also makes us a little nervous. The meds fighting GVHD are kind of a safety net of sorts.
Jordan also received a flu shot today, her first ever.
On a holiday note, we have finally put up our Christmas tree and some lights outside. It's beginning to actually feel like the holiday season now.
Madison and Noah are both very excited about Santa coming to visit.
It's hard to believe that all of this stuff with Jordan actually started last December. Where has the year gone? Time waits for no one.
Thanks for all the prayers and well wishes. It's such a blessing to receive them all.
Please continue to prayer for Taylor. She's fighting hard.
Little Ellis lost his fight recently, please keep his mom and dad in your prayers too.
www.caringbridge.org/fl/taylor
www.caringbridge.org/mn/ellis
Lots of love,
Katherine
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