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YASHAR 15 Y-O GOING TO AN AFTERNOON TEEN DANCE AT STANFORD



Yashar was diagnosed with Acquired Severe Aplastic Anemia (Idiopathic) on June 2004, the day after Father's Day. SAA is bonemarrow failure and is rare in children (4-6 in 1 million annual diagnosed in the U.S.) The only known cure is a succesful BMT. Yashar has 3 siblings, but none were a match and no match was found in the National Bone Marrow Registry either. On July 12, 2004, he underwent ATG/Cyclosporine therapy and is currently in remission . Late December 2006, Yashar was once again put on CsA after counts began to slowly drop. Thanks to God he's doing well!

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(FOR COMPLETE STORY OF INITIAL DX, REFER TO FIRST JOURNAL ENTRY)




NEW PHOTOS POSTED ON 06/27/09





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NOVENA TO SAINT JUDE

May the sacred heart of Jesus be loved, adored, cherished and preserved throughout the world now and forever!
Sacred Heart of Jesus, have mercy on us.
St. Jude worker of miracles, pray for us.
St. Jude helper of the helpless, pray for us.
AMEN

Thank You St. Jude!

Journal

Saturday, June 27, 2009 8:20 PM CDT

Hey! Surprise…it’s me…

I don’t know that anyone is checking this web page any longer maybe the aunties are, but I still like to stop by now and then to vent and to journal some of my thoughts as they relate to Yashar, his management of AA and any changes as they may occur in his life...period.
These days, he hardly ever lets me take his picture anymore, but tomorrow he’s going to a teen-dance and will dress and feel handsome. If I'm lucky, I'll post a new pic tomorrow or maybe I might just have to resort to old tactics. It's a pic or else... I’ll have to tell him that I won’t give him or his friends a ride to the dance to see the cute girls. : ) Whatever it takes...

I warn you this is a long posting…probably the longest I’ve ever submitted.

First of all, this past Father’s Day marked the 5th Anniversary from the time we learned of SAA. Lots has happened as during this time Yashar has gone from a sweet, cute, abiding little boy of 10 y-o to a handsome, but very stubborn young man of 15. There are days that I think he’ll drive me crazy! He’s very good about taking the cyclosporine, but terrible at taking his magnesium supplements and Allopurinol for uric acid. His latest counts show his uric acid levels at a High Normal range and I just don’t want that level to get any higher. His prescription bottle holds 60 tabs, one months worth, but here we are two and a half months later and he’s still working on the same bottle!?? It’s no use arguing with him, because he’ll swear up and down that he’s taking the pills with food and he doesn’t know what I’m talking about. The water situation too has become such an issue. These days I sound like a broken record—“How many bottle of water have you drank today?” This really annoys him, but I’m sure not as much as it annoys me. Now I have to literally stand in front of him while he gulps down at least eight ounces at a time. He goes out in his moped with his friends and I text him a few times to remind him to drink his water and wash his hands. I really hate this---but what's the alternative? To make matters worst, I have to sort of remind him of stuff secretly. He hates sharing any information having to do with his illness with his friends. They think he no longer has to take any meds. I guess it’s a guy thing and a whole other story in itself. I don’t even want to begin to ask him about this.

His counts have been on my mind lately. While they do look pretty good and it seems that he’s stable, I am concerned about his WBC. In the past and since at least a year post ATG his WBC has maintained at a steady 4.5 to 7.5 range. For the past couple of months though, I have noticed that his WBC has gradually increased to the 8.0 and now 10.0 range. I also noticed that his lymphocyte count has decreased to a low-mid range normal level and his ANC has increased almost 2-fold. He’s not exhibiting any signs of illness, fever, tiredness, etc… I asked his doctor if I should be concerned about this change and he said, “No”. I will be taking him in on Monday, June 29, for labs.
The only thing that he’s changed in diet or otherwise is that he’s been using a gadget (Zeno) for the control of his Acne. This is a hand-held device that basically zaps pimples/acne one at a time. In combination with the use of Retin-A, this gadget has helped for the most part keep his acne in decent control. It helps get rid of the acne quicker. I don’t know that this could affect his counts, but I did mention the Zeno to Dr. Wong anyway. Now a days, I don't take anything for granted.

On another subject, here is something that has had me stressed out through-out this past school-year. It’s not as if I don’t have enough stresses in my life already, but does anyone really care? I know Yashar’s public High School doesn’t.

So it’s summer…school is out and I have to now worry about what I will have to do to get Yashar a decent education! During the winter-break of the 08-09 school year, I pulled Yashar out of his high school because of an incident that had occurred in one of his classes. Actually there were several incidents, but this was the one that “broke the camels back” my back! In my opinion, school officials did not handle the situation appropriately and in a timely manner so I simply pulled him out. God knows he’s been through enough in his life to have to deal with this.
At the beginning of the school year I had Yashar tested for learning disabilities as I knew he was struggling to learn. It has been our personal experience that it seems that while Yashar is on cyclosporine he has a difficult time concentrating and retaining information. We know this because when he first started the CsA we notice that this forgetfulness seemed to be happening a lot, but we were not totally sure if CsA was the cause. I then thought that perhaps this was just how he was, but once he was completely off of it (for a whole year) I noticed the difference. There truly was a difference in how he could process and retain info. He didn’t have to ask me several times to explain things or he just wasn’t as forgetful as he is now that he’s back on CsA.
I told the school Psychologist that this was a concern, but that there was no documentation of this being a side-effect of the med. Yet, that I knew of another patient who complained of the same symptom. To make a long story a little bit shorter, Yashar underwent several tests and surprisingly actually did very well in most areas except in “retaining info.” Short-term memory. He was given/assigned services through the “IEP” Individual Education Program so that he could do well at school. He was “supposed to” have received “notes” taken in duplicate from either another student or an assigned person. This “Never Happened”! He was supposed to be given extra-time to finish larger projects…”Never Happened”! He was supposed to be tutored and caught up, but this too never happened. I complained to his teachers and to the school and it seemed that we just went in circles and circles all the while Yashar kept falling behind. He became over-whelmed and felt like he just couldn’t catch-up. Basically the school said that through IEP they could offer these services, but (the catch) they couldn’t “enforce it.” They couldn’t demand additional stuff from the teachers. What a crock of s---! I told them that in other words these services only existed on paper to satisfy the states mandated “No Child Left Behind” bull. The only one ultimately paying the price was Yashar. I was at a crossroads as to what to do about this.

Then “the Incident” happened and I had had enough. One of Yashar’s female teachers casually told him that she thought he was masturbating (because his hands were under his desk). The kids in the class started to laugh and in an attempt to save face, Yashar then told her that if he’d been doing that his hands would have been up in the air. She then commented that, “Well, you know what they say about people who brag to having large ones, they usually have the tiny ones.” At this point Yashar was feeling totally humiliated and had enough. He proceeded to pull-out his cellphone to call me. She then took it away and he began to walk-out of the classroom. As he walked-out he announced that “L----” had some messed-up teachers. She then threatened to call the dean if he walked out, he told her to go ahead because he was going to tell him what she had said. To add salt to the wounds, She instead then called campus police to have Yashar taken like a criminal.
He was escorted to the Dean’s office, but the dean was busy with another student at the time. While Yashar waited in the lobby he called me to come pick him up. I asked him why and all he said was that he couldn’t talk about “it” over the phone. At this point I wasn’t sure what was happening, but in my mind I thought it had something to do with homework or maybe even some dialogue between Yashar and another student. Never in my mind did it occur that anything like this had taken place. I got to the school and was met outside by the counselor. She handed me Yashar’s cell phone and simply said that Yashar had been very honest about the whole incident and that the Dean would be getting in touch with me soon. At this point I still thought that “homework” was involved in the situation as Yashar was struggling. It wasn’t until we drove off and were heading home when Yashar told me what had actually happened. I quickly stopped on the side of the road and called the dean. He didn’t answer and so I left a message to call me back asap. I was livid. I was angry that they didn’t think this was important enough to call me in to discuss in person--like right away. Well the following day came and went and still no call from the dean. I called left a message for the principal, but never got a call back. We went into the Thanksgiving holiday and then back and still no call. Finally I emailed and hand-delivered a long letter (almost as long as this one
: ) to the District Superintendent. Boy, come Monday morning every official at the school was calling my house, cell, and my husband at work. Finally, I was scheduled to meet with them to discuss this matter. I asked if I could bring someone with me and right away they wanted to know if this person would be a lawyer (I couldn't afford one) as they then would have to bring in district lawyers to be present at the meeting. I then said no, it would just be my husband, my sister, and I (extra ears and support).

THE MEETING---
Prior to walking in to the meeting I told my husband that I felt that they were going to try to brush this whole ordeal under the rug and “Now” talk about what was happening with Yashars’ schooling. Just as I had thought, not more than ten minutes into the meeting the principal wanted to forget the whole teacher/harassment incident and instead talk about Yashar’s schooling…a little too late!

The meeting started off by me asking why after several phone calls etc…no one thought it was important enough to contact me regarding this serious situation. I then proceeded to tell her that had it been a “Male” teacher making reference to a female student’s private parts, the school would have been all over it like right away! She then looked at me straight on and said that indeed the situation had been taken care of in an appropriate and timely manner (via a meeting that supposedly took place the same week as the incident), but that “someone” had dropped the ball and had forgotten to notify me. Hmmmm....Again, what a crock of S—T! I then told her that if indeed this was true, didn’t it make sense that my husband and I should have been present at this so called meeting that supposedly took place? I mean it did involve our son after all. I'm sure our parental rights were violated. She then said, “No” as the teacher had already been “talked to” and dealt with. I then asked in what matter and was told that she couldn’t share this with me as this information was employee/district confidentiality. I then asked, well tell me…is she in school today? The answer was “Yes!” At this point I knew nothing absolutely nothing had been done. I also knew that Yashar didn’t belong at this school.
This part of the meeting was concluded by the principal asking me what would make this whole situation better for me. What would I like to see happen. So I told her that while I realize what type of pressures many High School teachers must endure on a daily bases having to deal with teenagers, I still didn’t see what warranted this type of behavior from a teacher, especially since she not only initiated the dialogue she proceeded to take it to another level instead of ending it. I told her that I thought the teacher should give Yashar a personal apology in front of the class just as she had degraded him in front of the class. She had to explain to his classmates why her comments were so out of place and just wrong on so many levels. In my opinion, Yashar was not the only victim that day. The message to the other students was that it is acceptable that a teacher can talk crap to a student and get away with it. As an authoritative figure, she should have been the one to set the example and the tone. I wanted the other students to know that this type of behavior in a classroom environment especially coming from a teacher is under no circumstances ever okay.
On my part, I talked to and explained to Yashar about his reply (with the hand-gester) not being acceptable either---even though he was trying to save himself from embarrassment. The principal then said that she, (the teacher) could only offer Yashar a personal apology, but not in front of his classmates…”No Way, that will never happen!” Is what she said to me. I then told her that this defeated the whole purpose of an apology. It then would simply be an insincere apology. Gee, then we as a society wonder what is happening to our youth. Hmmmm…
The principal then quickly shifted gears and went into, “Well now that this “minor incident” is behind us, let’s talk about something more important---what’s going on with Yashar’s grades?” The gull! I felt like she had just slapped me in the face...HARD! I looked towards my husband as he knew what my look meant. Just as I predicted, not only did they quickly try to dismiss the real situation at hand and move along quickly, but they belittled it to boot.
So, I then stopped her in her tracks and told her that my sole purpose for being at the meeting was to deal with the harassment (in my opinion) that had taken place and that in my view had up to this point-- not been dealt with appropriately. Discussions about Yashar’s grades were just going to have to wait for another day---God knows we had already been waiting for most of the year. I then got up and calmly said, I’ll talk to you another day. I held myself back from saying what I was really feeling. She quietly said, “Very well, have it your way.”

Prior to the meeting---during some of the calls I received after writing the letter to the district Super, I was overwhelmed and surprised to hear the comments and feedback regarding this situation that was expressed by some of the school officials. At times it seemed like they were trying to make excuses for the “poor teacher” who has to deal with the raging hormones of the teen students. It made me sick, and I kept thinking well, she chose this profession and should have been trained properly for it. Yet, they also made me question my own feelings. Perhaps I had over-reacted a bit to the situation, especially since I am sensitive to “Yashar’s world” and what happens to him. But then thankfully my mother instinct would kick-in and confirm that no, I didn’t overreact. This situation indeed warranted being taken seriously and not brushed off as an everyday occurrence. I got to thinking that perhaps it is indeed a common occurrence (sad thought) at the high school and therefore these school officials have become desensitized to this behavior. For me it's not an everyday thing and I shouldn't and won't accept it.

So with all of this said, since then I have been doing what I can to teach Yashar at home…not quite a formal education, but an online education where he actually is learning a web page design course. All the while being bugged by the school every so often. They call to remind me that Yashar is delinquent and that “By Law” he should be in school. I was even called a couple of weeks ago to be told that he had to come in to take his finals. I just had to laugh at that one. I, in every way possible have told them that he will not be returning to that school and he hasn't since Thanksgiving. For now, I have decided/intend to fill out a California Affidavit for home-schooling. This should take place in early October. In the meantime I’m also looking into another program that involves classes at our local community college. This just might be the best fit for Yashar.

Okay, so I vented and recorded my thoughts…

E-mail Author: NLJabbari @comcast.net

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