to be honest i never thought this day would come...
camryn lee was taken off all her meds but one this past friday. and the one that's left...that one for only 4 more weeks to wean her system off of it.
wow.
we knew on tuesday that the doctors were running test, but we hadn't heard from them so we just continued on with life like normal and figured they'd call if any thing needed to change.
friday afternoon we headed to see brave with auntie dede, riley, peighton, tina, and eisley...it was lots of fun! as we were leaving tina's house heading to the theater jason called...i picked up and he said dr.m had called. dr.m called and let jason know that camryn's immune system test was super great! normal numbers are 600 - 1200, they expected cam's to be somewhere in the 200's due to the immuno suppressant drugs she has been on. camryn's number 850...well within normal range, which caused the doctors to pull off all her meds.
i probably don't need to tell you that this is a HUGE step for camryn. her system is recovering and her immune system is fully recovered. an amazing step. one not taken lightly. camryn has taken various meds daily for over three years...some of the meds were taken every.single.day. for three years. her system recovered and now it's strong enough to fight on its own.
the body is truly an amazing thing.
as of now camryn is as close as she's ever been to a normal kid...she has longed for that since the beginning of the second journey. and now, she is thrilled to brush her teeth and go to bed...no more medicine routine or any of that. she is excited as can be!
the lord has truly blessed camryn this year...sept 2011 - june 2012 have probably been her best. she has grown and experienced life as she has longed for. and as her parents we could not ask for more. she's living. she's thriving. she's surviving. she's hoping.
but most of all...
she's grateful. there's a piece of this journey that camryn is beginning to grasp...the piece that not all stories end this way. the part where death becomes a reality, the part when you don't get to come home...in her 8 year old understanding she is beginning to see that jesus made her better, and in that she is thankful. her faith in jesus has grown...and honestly, that is an amazing gift.
Monday, June 25, 2012
Wednesday, June 20, 2012
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.
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.
Saturday, June 16, 2012
a few pictures...
so, i had 448 pictures to upload. can you say a little behind?
i put some in the header as i'm playing with a new free photo editing site, i'm not in love with the format...but, it'll have to do for today. i'll see if i can make the pictures smaller and a better format for a header. but, for now there's some new pics of the dynamic duo.
i promise that one of my goals this week is to begin posting all the updates and now that i have pictures they'll be that much better. :)
hope you have a great weekend...
i put some in the header as i'm playing with a new free photo editing site, i'm not in love with the format...but, it'll have to do for today. i'll see if i can make the pictures smaller and a better format for a header. but, for now there's some new pics of the dynamic duo.
i promise that one of my goals this week is to begin posting all the updates and now that i have pictures they'll be that much better. :)
hope you have a great weekend...
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