Feeling Defeated-4/30/15

Growing very impatient with the high school.

Jordan received an attendance failure in one class, and an INC in another class last semester (yet both classes have a final grade of an 88 and an 89-which are B's); which means instead of him receiving 4 credits last semester for four classes, he only received 2 credits (why he received these in only two classes, instead of all four, I have no clue). Emailed his counselor early March about this, said she would look into it, but in the meantime to fill out the appeal attendance failure form. Which I did, including attaching all of Jordan's doctor notes, hospital discharge notes, a letter from his hematologist (stating that Jordan cannot attend school if his counts are below 25,000 and that there would be days he would miss due to treatment to keep his counts out of the danger level), and a personal letter from myself stating why Jordan should receive credits in those two classes, and explaining his condition. Haven't heard anything since. So I sent another email this morning to his counselor, asking for an update, and if the appeal was approved, if not, what actions do I need to take. Waiting on a response from her....

Pissing me off, I understand about the county attendance policy. Whether its excused or unexcused absences, its an automatic attendance failure in that class if its 10 or more absences. I don't agree with it, especially if it pertains to a medical condition, but it is what it is.

Back in October, I had a meeting with his counselor, the school nurse, those four teachers, assistant principal, and a homebound school teacher, educating them on Jordan's autoimmune disorder, and got him started on a 504 plan. I was under the impression that the point of the 504 was to protect him from receiving attendance failures if he missed school due to medical reasoning. But was told in March, by his counselor, that the 504 plan does not protect him from that, because its a county policy. That the 504 plan is in place, incase he misses an extent amount of school again, that the homebound school will kick in, and help him keep up with his school work, also allowing him more time to make up any missed work (which in the 10 years he has had ITP, he has never had an issue keeping up with this schoolwork/making up any missed work; and has always remained on the A/B honor roll).

I just do not get it. Jordan's autoimmune disorder is chronic, there is no permanent remission period for him. Our experience is he gets a few months out of the year with good counts, before they drop in the danger level again, and he misses school due to being hospitalized for treatment. It baffles me that I have to deal with this, every single school year, to make sure he graduates on time with his class in 2018. We have considered pulling him out of the school system altogether and homeschooling him, to receive his diploma, but he doesn't want to do that; he wants to be able to walk the stage with his friends in 3 years, and I do not want to take that away from him. But as a parent, what do I do, when I tell him to keep doing what he is doing in school, keep making up the work, stay on the A/B honor roll to prove to the staff that you can still keep up, even with missed school days; and they turn around and punish him with not giving him the credits for the classes he has so rightfully earned.

Update 6/1/15

The school finally revoked the Attendance Failure for his classes and he has received the well earned credits for his classes. 

April Update-4/28/15

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!