Its been almost 3 months since I have updated, which is a blessing, because that means not much has needed to be updated.
Jordan is doing well since my last update in February. His platelets have been fluctuating up and down for the past two months. He got sick at the beginning of March for a couple of days, so his counts took a little dip, and its taken some time for them to come back up. At the same time, we have been slowly decreasing his steroids. Last I updated in February, he was at 8ml twice a day, as of yesterday, he is now on 3ml in the morning and 2ml in the evenings.
He is also doing well on his SubQ therapy here at home, weekly. His IgG levels are currently at 1064, which is a far cry from them being in the 400s back in the Fall, and its right where his Immunologist wants him to be at. It was an adjustment when we started back in January, but now its pretty routine for us on Friday nights. Premeds (Tylenol and Benadryl) and numbing cream applied about an hour before infusion, and we are good to go.
We saw Diana last week at the clinic (saw Dr. Gold for a few minutes), no swollen lymph nodes, and she could barely feel the tip of his spleen, so all good there. Jordan has been suffering from some ulcers in his mouth for about two weeks, one being pretty big on the inside of the bottom of his lip, so they did a culture on that, it came back negative for herpes simplex.
Jordan still suffers from fatigue at least once a week, last week he came home from school and went to bed at 5PM, slept until 6:30AM; but everyone that deals with ES, we all know its just a fact of life with living with this autoimmune disorder. Also doesn't help that he has PE this last 9 weeks of school, and they are pretty active the 90 minutes of class (running 2 miles, soccer, etc); we are allowing him to participate because his counts are good, which I am thankful for, because he needs this class to graduate in 3 years, and I'd like to go ahead and get it done and over with.
On another note, dealing with school; I am fighting with them right now on giving Jordan two attendance failures last semester in two classes. I was under the impression placing him on a 504 Plan in October, this would prevent that from happening, but alas, not the case. In our county, the school board policy is that no child can miss more than 10 days of school in a semester (excused or unexcused), if they do, its an automatic attendance failure in the class. I filled out the appeal forms, sent in all the copies of doctors notes, and a copy of a letterhead from his hematologist, including a letter from myself; that was a month ago, and no word yet. He had a B in both of those classes, so I am not seeing what the issue is here. I will be furious if he does not receive those class credits, and they want him to make up the time that he missed; especially since he made up the work in a timely fashion and kept up his grades in those classes. 31 more school days to go, and it cannot come soon enough!
We are taking a break this week from doing a CBC, will take him back in next week, where they want to run a Rituximab panel to see if his immune cells are still suppressed from the Rituximab that he received in October/November of last year. Hopefully its still the case, since he is doing so well.
Last week's counts are below:
Hgb: 14.3
Platelets: 199
IgG: 1064
As always, thoughts and prayers!
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