ryan's appt at coh went really well on monday. we arrived at 7:30 am and they drew blood to run his labs before the procedure. it took around an hour and a half for the labs to come back because they wanted to look at the "differentials," which are the values which indicate if there are any blasts in his blood. at around 9 am, debbie escorted us into a treatment room and happily announced that ryan no longer had any blasts in his blood!!! the 2% and 3% from prior weeks were indeed recovery blasts and there was no longer any sign of them. after a big collective sigh of relief, she left to talk to the chair of the pediatrics department and when she came back, she said that ryan's bone marrow biopsy was cancelled because the blasts were gone and he no longer needed it! HOOOOOORAYY!!!! we were immeasurably relieved to hear that ryan is okay and that he hadn't relapsed.
debbie instructed us to begin ryan's oral chemotherapy again, all at half dose, with the exception of decadron, which is to be given at full dose. so we are starting back up on the meds again following a four week hiatus from all oral chemo and bactrim.
following our appointment with debbie, we met with ryan's neuropsychologist, dr. turk, to discuss his baseline developmental evaluation. he does have some significant delays, but that is not a surprise considering everything he has been through the past year and a half. there are delays with his language and cognitive reasoning, but she was able to accurately assess his cognitive skills because he selectively shuts down and refuses to participate in the testing. he can be extremely shy and when we are in public or in unfamiliar settings, sometimes, he just shuts down and refuses to participate socially. he does that at school quite often, and he also does that when we are around large crowds. dr. turk said that ryan has difficulty transitioning to new situations, whether its a new place, a new person, or even just a new cereal, for example. she is not entirely sure why, but has referred him to the "regional center" for further evaluation. she has also recommended speech and language evaluations by the school district & early intervention services, but wants him to remain at his current preschool because it seems like a wonderful and nurturing environment for him. she also has recommended play therapy to help him better identify and express his emotions. she will provide the play therapy sessions for him at coh.
while she strongly feels that ryan is very connected to the world, in the sense that he is extremely attached to his parents and is easily embarrassed in public, she is concerned about his inability to socialize and communicate in an age-appropriate manner and would like for the regional center to further evaluate this area especially, in addition to his cognitive skills. she did mention that she'd like for regional center to "rule out" "pervasive developmental disorder, not otherwise specified (PDD-NOS)," which is not autism, per say, but it is part of the "autistic spectrum." kids with PDD-NOS have "marked impairment of social interaction, communication and/or stereotyped behavior patterns or interest, but full features of autism are not met." we are not in denial about this and are obviously concerned for ryan and will be following up on all her recommendations, but we aren't fully convinced about the PDD-NOS, and neither is dr. turk. jason and i believe that his behavior and delays are due to all the trauma he's experienced and the fact that he hasn't been able to fully express his feelings and fears, compounded by the fact that he's been socially isolated for such a long period of time. of course, we don't know if any of the chemotherapy meds have impacted his cognitive development, but time will tell, in addition to the further evaluations.
so that is that. jason and i are just extremely grateful that ryan continues to be in remission and that he is well. we can deal with any developmental issues and we will help him get early intervention services.
that's the update for today. i will try to post xmas pics and pics from our xmas train ride later on today or this week. we hope you all had a nice holiday! thanks for stopping by.
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