Well.... so I dont even really know what to say about todays appointment. it was amazing, confusing somewhat, and a little frustrating honestly. Amazing because WOW... we were scheduled to see Dr. Speckhart.. who yes, was part of Kaydens oncology team, even playing some big parts in his treatment, so I was definitely excited to see her but then we get there and a nurse comes in ( its clear shes Ben told who we are or I guess what weve gone through by the look of sympathy in her eyes ), she gets the run down then tells us Dr. Chaleff will be right in. I was like, wait, what?! hes here?? were going to get to see him? I immediately started crying :/ lol.... im a sissy :/ I just havent seen him since Kaydens funeral... the nurse says yes and DeeDees here to see you guys as well :D when any child gets diagnosed with a life threatening illness, you get assigned a social worker. deedee wasnt originally ours but became ours and she just..idk..became part of the family I guess. it meant SO, SO much to see the two of them..... its just been SO long.. Anyway.. confusing & frustrating, because it seems we may never get a clear answer of whats caused all the internal bleeding and mass swelling of his groin and scrotum... poor baby :/ poor kid hasnt been able to ride his bike for 2wks now :( still cant! but yeah so the doctors really just have no explanation for what caused this and it seems the thought is that as his symptoms are improving (bruises starting to fade, hes actually MOVING now - like able to walk where for about 10days or so he wasnt able to do anything but sit and recline - no more fevers, etc.) that basically they could do a huge work up on kolby but that itd be difficult given his age, would cause him more discomfort, and STILL may not get us any answers. basically, from what I understand anyway, the feeling is if it doesnt happen again and if its getting better does it really MATTER what the cause was? - of course...my answer to this is YES, IT DOES, but I needed to decide if it was worth putting kolby through a bunch of testing in order to find out.... and yesterday, kolby was moving around MUCH better I had to admit, so I agreed to Dr. Chaleffs treatment plan which was to re-run the original blood work to check for any changes (good or bad) and I believe to just see how his blood cells were working. like to see if theyre working properly - which he believes they are. He said he feels that if kolby had had a blood disorder he would NORMALLY have had it his whole life not just randomly like this. where kolby underwent surgery last February on his throat (which he says can be a very rough surgery) and also was circumsized at birth and never had any bleeding issues after either...he doesnt believe thats the problem but is checking regardless. Also, he said there are viruses that can cause your blood vessels to basically have holes and leak. I believe you thinking its a combination of a possible virus and then the trauma of falling off his bike and hitting that area..... that happened four days before he woke up with all the internal bleeding and swelling.....so!! basically, I guess the official answer is still I dont know :/ that and that we may NEVER know... blood test results come back Monday. after that its just going to be a wait n see to see if this ever occurs again. sorry took me so long to update yall...just hadnt gotten around to it. thank you all again for all your love, prayers, and support!! yall are the BEST!! xoxoxo!!!
Posted on: Sat, 26 Jul 2014 22:34:01 +0000
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