Before School let out for Christmas break, we had a sit down with Dylan’s teacher….Dylan is really having a hard time with school. He is struggling with virtually all areas of his studies and most notably math. The new way of teaching makes it extremely hard for us as parent’s to help, we search google, youtube, and virtually anywhere to understand the processes of how they are being taught now and its very frustrating for us, let alone for him. The new way of teaching (common core) is very hard to understand and very much a long drawn out way of doing things. If you don’t have your number facts down pat, you will struggle, as this is so much more than just finding an answer to a problem, its critical thinking and often times thinking in reverse to get the answer. Its tough and its extremely tough on Dylan, especially since he has missed a lot of school during those informative years. Because of this and him not getting the help we feel he needs and deserves, I have challenged the School district for an IEP (Individual Education Program). You see Dylan is on a 504 Plan (this is for students with disabilities, albeit it mental/physical/medical) and if you ask me this “plan” has failed him. He has been brushed aside and left to fend for himself. I don’t think its done maliciously but more a function of our flawed understaffed and funded public school system. This has been a major hurdle and one that has us fighting with Dylan to get him the help he needs and at the same time still trying to keep him on track with his current coursework.
More concerning to us has been Dylan’s mental state, he has gone from a fairly happy go lucky kid to one that over the course of the last few years has grown increasing more upset, angry, and hurt. It’s apparent he needs mental support from an outside influence and we feel strongly that he needs some form of psychological therapy. The truth of the matter is, he's traumatized by his past and current existence. He spends his days in constant fear of everything for the most part, albeit allergies, his liver getting sicker, etc...He’s at a critical state of which we feel he needs intervention before it’s too late. We attempt do everything we know how to do but he needs support from a professional. We just don't know what to do for him anymore, he needs an outside influence, as parents he will only take in so much from us and to be fair to the situation, we aren't professionals who understand how to help in this scenario.
So I contacted his Doctors at Kaiser, whom referred me to their “Psychology” dept. After going in circles and advising them that I’m not just going to allow him to see just anybody, have him bounce from person to person, as I feel he needs to be with someone whom understands him, his situation, his predicament, and his medical challenges….it was obvious to me they would not be a good fit. After emailing Stanford and discussing, we have been granted a referral to Stanford from Kaiser, as they have a team whom helps kids just like Dylan (ones that go through medical related trauma). So we are anxiously awaiting this meeting and taking a step towards a happier Dylan. I can only hope it helps and that we’re doing the right thing.
Not too much of a shock is the continued roller coaster labs …from bad, to ok, to bad again. Yesterday saw us at Stanford for consult with our transplant team. Not only are Dylan’s liver labs bouncing around, so is his blood counts. They are off, way off as well. His Eosinophils are out of control, seeing them as high as 37% and his absolute count nearing 2,000 (like 10x what it normally is in a person). He’s anemic, causing low RBC’s. He also had Hyprchromia, which means pale RBC’s, and also Microcytes, which are RBC’s that are smaller than they are supposed to be. And to make matters worse, he also just tested positive for EBV (Epstein-Barr Virus). This is concerning because this virus causes Lymphoma (Cancer) in transplant patients, its called PTLD (Post-Transplant Lymphoproliferative Disorder). This is why Dylan had his Tonsils and Adenoids removed 1 year post-transplant, as it was harboring in those tissues. The doctors have ordered him back on Valcyte (anti-viral med) and reducing his Rapamune (anti-rejection med) in hopes of allowing his body to let it go back into remission. It’s a fine balancing act though, lower immunosuppression too much and he can go into rejection, not low enough and the EBV can continue on its destructive path.
To say the least, we are going through a very hard time right now. I have no doubt his meds and the multiple relentless issues are compounding everything and playing a big role in his state of being. He's really a hurt kid trying to deal with it the best he knows how, we all are. It’s heartbreaking to see/hear his frustration, anger, and overwhelming feeling of hurt he has.