Update from my wife on Trey

Trey received 3 mg of Campath yesterday, and about an hour after it finished he began reacting. He had some chills/shivers and a fever of 103.9. He stayed fairly comfortable through it bc of all the medications, and we felt hopeful that the stronger reaction meant bad cells were dying. This morning the numbers revealed 0 lymphocytes, so yes the Campath still works (see pic below)!!! Also, we think the skin is looking better. All of this is encouraging! However, we have learned to stay off the emotional roller coaster nomatter how tempting it is to get on:). It rides up and down with the circumstances and news of the day…instead we stay anchored to our Rock, Jesus Christ, the same yesterday, today, and forever!!
Our plan going forward is Campath Tues and Friday; photopheresis Wed. and Thurs.; and, Romadepsin on Sat.
We will continue on this present course until The Lord shows us otherwise.
Trey’s spirits are good! He has been very talkative, joking with his nurses, and making us all smile.
Trey has spent about 200 days in the hospital since last Oct…. Today, Dr. Goldman asked him why he has stopped asking if he can go home… Trey said quite simply, and even with a smile “because I know I can’t.” He is one amazing little boy and I am one blessed mommy.


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