Camryn's "holiday" visit to clinic was today, this visit is becoming our annual family visit. We all go...Camryn, Wyatt, Jason and me. Camryn likes it this way, she loves when we all go with her...after all UCLA is truly her place.
We headed out bright and early. Wyatt was not very happy about getting up before 7, but if we want to beat the traffic and the clinic crowd then we have to leave our house by 7. Thankfully, traffic was not bad at all especially with the rain...but, we realized that UCLA is out on winter break so we did not have the usual commuter traffic. I think we made it down in record time...it was fantastic!
Wish I could say the same for our clinic visit...it always takes awhile to get in and settled and then we wait for Camryn's NP to come see us first and then we wait for the doctor. Since Wyatt was with us Camryn loved showing him all the in's and out's of her life at UCLA. They hung out in the Hemonc playroom, watched a video, and read a few books. We got to see B, Camryn's NP...she said Camryn's scalp looked much better. Over the past couple months we have been dealing with dry skin issues on Camryn's scalp...it was getting pretty bad, but last month the doctors suggested a special shampoo and since we started it, her scalp is better. It was nice to have confirmation by the doctors that her scalp did in fact look a lot better. The other skin issue Camryn's battles is the remnants of her GVH rash...but, again it was confirmed that the rash is not getting worse in fact it is getting better.
We got to see Dr.M today which was fun, Camryn laughed and laughed with Dr.M while he checked her eyes, mouth, ears, and listened to her heart. Dr.M said that Camryn is doing perfectly. In fact he said that she is in the...
"PERFECT PLACE"
Dr.M reminded us that from the beginning they wanted to induce GVH to give Camryn's immune system a boost, a jolt if you will. And that's what has happened...the plan has worked "perfectly". Dr.M is very pleased with Camryn, she has done everything within her power to be well...take her medicines, eat, gain weight, and really believe that she can fight this. He decided to continue the wean of Camryn's tacrolimus, she's down to .3. Hurray! The only thing that would change this would be if Camryn's liver enzymes were too high, but they would call after her labs came in. Jason and I both were so hopeful that the wean would stick if you will...that slowly but surely Camryn would get to the less meds, or dare we even say it no more meds.
We said our good - bye's and headed to make our appointment for next year...Camryn thought that meant a looong time from now. But, really just January 2011. :) We went to say hello to Nurse Charlotte and pass along some Christmas treats. Camryn loves her family at UCLA...we are truly blessed by their love, care, and support for her.
Later this evening we got Camryn's labs and as B said "they look great!". Camryn's labs are nice and strong, much the same as last month. And her liver enzymes? One a little high, the other in normal range. Yay! So, the wean continues!
We are thankful for Camryn's perfect place...it has taken a lot to get to this point. Of course sometimes, most of the time really I wish this wasn't Camryn's story; but it is. There is no escaping it...but I am thankful for the moments like today when I am reminded that all is not in vain. That Camryn is making progress, be it slow...but, we knew that this time around would be much slower, much more conservative and really that's okay. Camryn is well...she is healthy...she looks and acts like any other six-year-old. And we love it...
We love this perfect place.
And who doesn't love a few pictures...many thanks cousin Riley for introducing Camryn & Wyatt to footie pajamas, they love them! :)




Hope you are all enjoying a wonderful Christmas season!