I was looking back at last year's Thanksgiving post and was amazed how much has happened since then. At that time Carly was only six weeks out of her first tumor resection surgery, she had a giant collection of fluid on the top of her head and she had residual tumor that was growing back quickly. Countless nights at the hospital and many surgeries later, Carly continues to be quite the fighter.
The best recent news is that Carly remains tumor free. She had a routine MRI check-up a few weeks ago which confirmed that the tumor has not grown back. This was music to our ears. Carly has not had much progress on the seizure front though. We have tapered up to the maximum dose on the second medication and she continues to have many seizures each day. At one point they dropped as low as two seizures a day, but they have increased again to as many as eight in a day. She has also been very tired since her seizures began on September 26th, sleeping for nearly twenty hours a day and only smiling a few times since then. She clearly is not feeling great and we need to get to the bottom of this problem as soon as possible. She will most likely begin a third medication in the next few days, and we all hope that this is the one for her.
Several things have not changed since last Thanksgiving. We continue to be thankful for all of our friends and family that have offered their love and support. You have all helped us in so many different ways, we can't imagine going through this without you. I am thankful everyday for Christa who is not only an amazing wife but also the most incredible mom a little girl like Carly could ask for. And of course, we are thankful for Carly who continues to be an example of strength and perseverance and always brings out the best in everyone around her.
Love,
Brad
15 comments:
You all are one of my reminders how precious life is and how important community is...Keep the strength and smiles going as we all are with, and for, Carly and her awesome parents.
Love,
Susan
We constantly keep you and Carly in our thoughts and are certainly thankful for all of you :)
Good seeing you guys this Thanksgiving. Much love.
-Steve
It's been a while since I've checked in on Carly. I'm so glad to hear that Carly is still tumor free. But, I'm sorry to hear that she has been struggling with seizures. That's so hard for all of you.
I also wanted to let you know that, as always, I'm inspired by the three of you and have you in my thoughts and prayers.
Hugs,
Jackie
http://www.caringbridge.org/visit/jackieo
We know that Carly is thankful she has such incredible parents, and hope that she will be able to tell you that herself some day.
Love,
Greg and Gail
You three are one of the greatest gifts that have come into my life as part of my journey of losing Tikva, and for that - for you guys - I feel so grateful. Carly is indeed an amazing little person, and I continue to be so inspired by her (and her parents). Hoping with you that the seizures get resolved and go away quickly, so Carly can get back to the important business of showing us her beautiful smile. Much love.
I'm thankful that Carly has you two for parents and the largest (and most personal) support system I have honestly ever known of. I'm honored to be a part of that.
Carly, we're cheering you along each step of the way!
Love to you all!
Still here, looking for the news everyday, and thinking about you... trying to send some strengh... Cécile
Great news about being tumor free! So sorry to hear the seizures aren't stopping. Good luck on Round 3 of the meds. Will continue sending anti-seizure vibes Carly's way so she can start flashing her adorable smile more. Carly deserves to feel better and we'll all benefit from more of her smiles. Keeping you all in my thoughts and very thankful to have you in my life. ((HUGS))
You have so much to be thankful for! And you inspire people to be thankful for all that they have in their lives. I hope that you are able to get Carly's seizures under control, as they seem to be her last major hurdle. We are thinking of you every day.
Love,
Maya, Paulo & Marco
Brad, Christa, and Carly-
You are certainly in our thoughts
all the time- Your amazing strength
love, and positive energy is so
evident in all the friends and support you have (including us).
Despite the tough times you have been
thru- your positive inspiration seems to
take over! Sending our love from
Indy. Love, Hal, Linda & John
And we're VERY thankful to have all 3 of you in our lives! Much love.
like heather said, we are soooo thankful to have you guys as friends. i think about you every day and send so many loving healthy thoughts to carly. and i really hope they get to the bottom of the seizures. i want to see a smiling carly again.
anyway, i miss you all terribly.
xo
We're always here reading, hoping, envisioning a full recovery and wishing for better, easier, smilier days for you three. So glad to hear that Carly is still tumor-free. Our big wish for the holidays will be that the doctors find the right meds to address and end those seizures.
sending you lots of love,
sheila and keith
We are hoping that Carly can find a way to be seizure free.Praying that they leave as quickly as they came. We send you patience and strength and of course positive energy!
Love to all of you from Ann Arbor,
Jenny,Will,Kate,Tess and MC
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