I can't see you, you can't see me.

You know when you're little and playing hide and go seek, and someone is about to find you so you cover your eyes and will yourself invisible? If you can't see them surely they can't see you.  That's how I've felt with blogging over the last few months.  If I don't write it, it's not real.

We've certainly had some exciting things happen. We had an amazing trip to San Francisco for a lovely wedding for Dan's cousin in May. In June we packed up our townhouse and moved into our new home. Lots of space, a great yard and lots of room for toys AND nice things.  Then we spent the Fourth of July in Ocean City Maryland with my family and had a great time!

But we've also been battling some health issues for Selene that finally got diagnosed today as chronic Graft versus Host Disease.  In true Selene fashion, she once again beat the odds and stumped her doctors. They've never seen it present like this, especially with a direct family matched donor.

All was fabulous at her one year appointment but shortly after she started slowing down. Walks to the bus stop were met with tears and refusal to walk. I would practically drag her while holding her hand wondering why she couldn't keep up.  It was getting warmer out and I attributed it to her sensitivity to the heat with a touch of 3 year old attitude. A few times I tried to cut her finger nails and as I straightened her finger she'd wince, I assumed she had paper cuts or something similar. When washing her hands she couldn't scrub in between all of her fingers, she'd just sort of cup her hands under the water and touch them together. She stopped running, climbing, playing, climbing onto the potty, climbing into bed, and now its progressed to where she can't sit down on her own or get up from laying.  She is up multiple times a night screaming, in pain? Maybe. Nightmares? Maybe.

Hind sight is 20/20 right? It was a mind explosion when we hit the day that I realized something was very very wrong.

We all went to Ainsley's school for her end of the year Kindergarten party.  I went to trace Selene's hand for the craft and not only could I not get her hand flat but she screamed in pain. What? What could this mean? I sent Ellen (her oncology nurse practioner) an email asking if this was concerning. The reply was "Yes! Go the pediatrician!"

We were seen the next morning (a Saturday) and her doctor was dumbfounded. He called her team and they decided she should see an orthopedic hand specialist. We did....he said it was in all of her joints and was bigger than we thought.  He ordered splints at Occupational Therapy and a visit with Rheumatology.

This seems like a good time to say that our delightfully cooperative toddler is no longer such. She cries, she refuses to open her mouth, respond, look at or be otherwise helpful during appointments. She puts on her best scowl and when things get too invasive, bursts into tears. Dan and I think its a mix of her knowing more about what's going on and what's coming as well as sensing our fear (which we try very hard to hide).

So off to OT. That was a disaster.  Lots of crying and general refusal to do anything she asked. They made her hand splints and wearing them has been an epic failure. They suggested 6-8 hours a day. We get a few at night and with enough treats and tv an hour during the day.

After that it was off to the Rheumatologist. More questions, no more answers. We got xrays and an MRI and have a cat scan on Friday. All of the amazing minds who follow Selene got together to discuss everything which led to the appointment today.  They are diagnosing GVHD. Despite the fact that it's post a year. Despite the fact that there are no other symptoms (joint and bone pain and swelling has never been seen alone.) Despite the exact match familial donor.

We spent a long time discussing everything with Dr. Olson and Ellen today. The plan is aggressive Occupational Therapy (5 days a week), steroids and a drug called Imatinib. Along with those drugs will come Zantac for the side effect of acid reflux and zofran for the side effect of nausea. Along with pain meds for Occupational Therapy. Ironically she will be on more meds now than she was 30 days post transplant.

I'm not going to lie- I'm terrified for 5 days a week of OT, back to weekly(ish) appointments to monitor other risk factor for the medications, and lots of daily meds.  Selene is a trooper but I think she's over all of this. I don't know what we'll do about preschool or how I'll manage it all. I do know that all of our family will do anything they possibly can to help and I know that I'll gather the strength from somewhere.

We listen to VeggieTales on our drives to the hospital and my favorite song joyfully sings "I have peace like a river, I have peace like a river, I have peace like a river in my soul." Sometimes I jam out and I'm like yes! It is well with my soul! And sometimes I burst into tears. This is definitely a burst into tears, I do NOT have peace right now. But I'm searching for it, and I'm sure I'll find it again.

I was chatting with one of my best friends and she sent me a passage from a Max Lucado book-

                           "Don't measure the size of the mountain,
                            talk to the one who can move it.
                            Instead of carrying the world on your shoulders,
                            talk to the one who carries the Universe on his."

I'm positive that God brought Selene through her transplant and while I can't for the life of me understand why this is happening now, I'm going to once again put my faith in him.  That he'll protect her, keep her happy and give her doctors all of the knowledge they need to get us all through.

It's humbling that every where we go people tell us they are praying. I really couldn't be more thankful for all of you.  Keep the prayers coming and know that we appreciate all of the love sent our way.