Last Tuesday Camryn and I headed to UCLA; she had a clinic appointment and a therapy appointment. I thought I had been super smart and scheduled them for the same day...in theory that would have been a great idea. In reality it made for a very long day.
We got to clinic super early...we saw Dr.J first, we have literally watched Dr.J grow up if you will. She is a third year fellow and had the unfortunate opportunity to first meet us on the day of Camryn's relapse. Dr.J has been and will continue to be a great friend to us, we have enjoyed her presence and her love for Camryn...it is a gift. Dr.J got caught up on everything and said that Dr.M would be in to see us in a few minutes.
As we talked it was nice to again have some reassurance about how well Camryn is doing in spite of the steroids and such. Yes, Camryn is still on steroids. Her dose has not been changed as of yet...she is showing signs of some acute and chronic GVHD so the doctors want to get her numbers right where they should be.
Dr.M came in and confirmed that there would be no change in medicines this week...we are on a weekly blood draw basis now. Funny, that we really are doing well with everything, but Camryn is getting poke every week. Ironic. Dr.M said her numbers were much improved and stabilizing which was great news. He said he was so happy to see her numbers doing so well. It really is a tension to hear "she is doing really well" and yet our counter is still full of medicine.
All in all it was a good appointment...Camryn is doing well far as leukemia and cancer. Her nemesis now is that which is making her well. Ironic, but a gift.
After we got done at clinic we went to the lab and got blood drawn...Cam's a trooper and doing so well with this every week. She hates it, she fights it, but she does it. That has been her battle cry throughout this whole thing...
I don't want to, but I will.
We got done and headed up to the UCLA book store...we needed to do something to pass the time. We shopped around, got a snack, people watched, looked around UCLA a bit. So funny growing up a Trojan fan and yet so comfortable in the Bruin world. We sat and chatted a bit, read a book, called Daddy. After while she was tired so we headed back towards the hospital. We came upon some little fountains...
Cam said, "Mom remember these fountains? This is where I came when I finally got to go home...Look Mom the sign says "Garden of Peace"...these are nice fountains, I like them."
And I remembered...a frail, bald, fighting little girl who so badly just wanted to go home...
And now she is a curly hair, steroid puffy, brave little girl who so badly just wants to be well...
Some things only slightly change.
We walked to lunch and enjoyed a Mommy - Daughter date. It was such fun, but both of us were tired, weary...just something about juggling UCLA life that does that to us.
Finally we headed to therapy...it went well, but Camryn was tired. Thankfully, her therapist was super understanding and was very good to her. Cam had to have a new hand brace made for night-time so that was pretty easy. She is still making great progress in therapy and we are super pleased.
Finally it was time to head home...after a total of six hours we were home. It was a long day...
And sometimes long days aren't good for my heart. Lately I have felt completely overwhelmed, pretty much since Camryn went back on steroids. It has been a battle between head and heart. Lots of things creep in to bother me, things that on any other day wouldn't even catch my eye. But, I was tired...I am tired.
Not physically tired, but emotionally weary...there just never seems to be a moment when we can escape the realities. And sometimes I would like to.
But, this is what it is. I was thankful for Easter...the hope it brings was a welcomed refreshment for my heart and mind. Remembering and realizing that HE is alive, HE knows, and HE cares...
After a long day on Tuesday I was reminded that no matter where the journey leads that Jesus is carrying us through...
Because HE loves us.