what's up medically...

so instead of trying to catch up chronologically, i decided to catch you up on what's new and then during the in between times catch up on the old happenings...


camryn had her regular tuesday clinic appointment this week.  i took her as it was jason's last day of school and 8th grade graduation.  i'm not nearly as good at clinic as jason, he's the pro...camryn told me numerous times that i was not doing what daddy does.  but, we survived just fine. :) 


we saw the fellow dr. c and she said camryn looked great and that the team was considering lowering her cell cept (gvhd med) again.  this was good news.  we talked about any graft vs. host disease flare ups and i confirmed that there really hadn't been any.  the few signs were some skin flare ups, but those were easily resolved with the topical creme her dermatologist dr.s had prescribed.  this was great news to dr.c.  dr.m came in to see camryn and the two of them spent about 10 minutes goofing around and just being them.  have i mentioned i love dr.m?  he told me that they were going to lower her med to once a day, which is a very low dose.  and the plan was in july to take her off of it completely...woohoo!  then he also said that they were going to run extensive blood work to check camryn's immune system and if her b & t cells were where they hoped them to be then they would discontinue all her meds.  all.of.them.


i probably don't need to tell you that this was the best news.  the thought of being done with meds, well it seems so unlikely; but the reality that is just might be means so much.


it means that camryn is really doing well.  that her system is really functioning on it's own and it is doing fabulous!  that she is in fact 3 years post transplant, and "it's about time the meds went away", to quote dr.m.  


we finished up at clinic and that was that...as we walked down a hall we've walked literally hundreds of times i smiled.  i knew behind many of the doors families were struggling, dealing with unknowns, hearing news that breaks their hearts...and yet, i smiled.  we'd been there and when there i clung to the hope that we'd be here.  and here we are...


then today camryn and i headed to ucla again to meet with her cardiologist (an annual appointment).  her cardiologist is great, i really like him.  he apologized for us having to drive down to ucla two days in a row...but, was happy to hear he was not our only appointment today.  he was happy because our appointment with him was truly uneventful.  i like dr.p...he tells it like it is, no beating around the bush.  he talked me through camryn's last echocardigram and the fact that her clot was still there.  he said that in fact it was the same size it was when it was first seen, and that 3 years ago it seemed old and now it's even older...basically, it is not a concern.  dr.p is the one who stopped the lovenox shots...he now took camryn off of baby aspirin.  dr.p feels it's not necessary...in his opinion and the opinion of every one who read camryn's echo the clot isn't going anywhere and if the body has not absorbed it by now, most likely it won't.  


so, no more aspirin...good news!  better news...another echo in a year and most likely a phone consult because her heart looks and is so healthy!  after all the chemotherapy this is great news!


after saying bye to dr.p we headed to the pulmonary function lab...


camryn had to have a pulmonary function test.  this was a new one for camryn and really i had begun to think she'd done most every possible test.  this was odd for her...she did okay, but not great.  camryn has a hard time blowing air out and a hard time holding her breath...all things that can be affected by medications.  anyways, her doctors will see the results and decide what to do...i'm not sure what they do.  but, it's something that has to be watched in camryn.


i guess you don't pump one's body with all the junk she's had and walk away untouched...so, there's a long list of things to watch.


but, for now...we'll watch our kitchen counter be less and less full of medication and for now that is enough.


enough.