"Are we going to the hospital today?"

Every morning Selene wakes up (in my bed, but that's a problem we'll solve another day) she asks "Are we going to the hospital today?" Every. Single. Morning.

Some days I reply, Yep. And she says "Ok!" And some days I say "We are." And she bawls. And the days I say "No." She squeals "Yay! Now we can do what we want!"

So we finally have our schedule set and I'm not 100% sure it's going to work. On Mondays she'll have school all morning and then I'll pick her up, feed her lunch on the way and have back to back PT/OT. I'm not sure this is ideal but we're going to try it. Coming off of a 4 day break and having a Tuesday break we'll might pull it off. Then she has school and a 3pm OT on Wednesday and a Thursday morning. Don't ask me about Kalina's nap schedule....

Her physical therapist met us for the first time this past Thursday and saw a lot she liked and a lot to work on. She's hoping to work with us for about 12 weeks which is encouraging. And her OT said it seems her muscle bellys are shortened and that it doesn't seem to involve damage to tendons. So to me, it seems that everything is reversible.  I'm trying to hear good news without getting too excited.

More good news is that markers in her blood work showed improvement and the possibly that this treatment is working. I'm steeling myself for our appointment on Tuesday and trying not to get ahead of myself because I don't want to be too hopeful. But weaning off of steroids would be amazing. Selene is eating me out of house and home! I buy like $15 worth of "green yogurt" (key lime ONLY Oikos brand) a week. Every day she asks to go to the grocery store and tells me she's hungry and thirsty every 26 minutes...

She went back to school shopping with Ainsley and Anita and ate a whole chic fil a kids meal as well as a McDonald's burger. I've never seen her eat a whole burger or more than 3 chicken nuggets at a time. So yeah.

Overall, with the help of our family I think I've got a hold on this.  Granted school hasn't started yet. So that's going to bring challenges, such as exhaustion and requiring Selene to separate her body from mine, but I'm hopeful we'll get through it and in a few weeks will be in our routine. For now, we're just going to finish out our summer, get our backpacks ready and meet our new teachers!

Thank for you the continued prayers and thoughts!

Guys! She put on a tshirt! And then took it off, but it touched her body.

Pictures before therapy.

Package from sweet friends!

Miss Big girl won't go down backwards anymore...

Accidentally gave her syrup for the first time and she's super stoked.

Ainsley joined us for therapy (Also, she has no torso strength and this was concerning :( )

She's not sure she wants to buy into this...

bear walk races!

I made pad thai and they devoured it.

Eating the leftover chicken before I can wrap it up...roids.

A card from Uncle Justin and Aunt Kelly, loves her Pandas

She's been trying to balance since her therapist showed her.

Slivers of hope

It's been a complete whirlwind. I'm always surprised at how fast things became manageable and bearable, our new normal.  Almost 2.5 years ago I sat in a room at the hospital getting trained to give Selene shots and I cried through the whole thing. Within two weeks it was nothing and I was doing it myself.  5 days ago I thought the Imatnib would ruin our lives. How could we wrestle her into this every day? By yesterday I did it while Dan was at work and she took it all smiles, ok and with a few grimaces.  At least she didn't kick me. Today it took just 10 minutes and she was actually laughing about other things during it. This concerns me that it's just prepping her to win every beer bong and shot race at Penn State in 16 years.

I was joking with the doctors about how awful it is and they told me that older kids just swallow the pills. That makes so much sense! I couldn't fathom while pills had to be dissolved. They said we could try teaching her to swallow pills using mini m&ms. But considering she can't bite the pill (otherwise it will burn her esophagus) I'm hesitant to trust her with that. Ellen also said "I usually taste all the meds but couldn't because this one is chemotherapy." Did NOT put that together when I tasted it... ;-)

Overall, other than the two hours of waiting, it was a good appointment. I had noticed an improvement in her hands and joints and so did Dr. Olson. Her blood counts responded how they'd expect them to with the steroids.  Next week we are going to stop by the lab in KOP before therapy to draw blood. If the markers that show them a bit into how GVHD is reacting come down we can wean back the steroids and just remain on the Imatnib.

After every dose of Imatnib yesterday and today (I do 5mls in a syringe to give the 100ml of medicine) she would hold her hands up and say "look how much I can open my hands now!" :-)

Thanks to a friend's suggestion we made her a star chart and she crosses off boxes every time she takes a med or goes to an appointment with a good attitude.  After 30 she'll get a prize, though at this rate she thinks checking the boxes is a thrill so I'll let her go with that until it doesn't work any more.

We had OT on Monday and Wednesday. It was a bit rough trying to get everyone on the same page and realizing that Selene didn't fall into the category of normal Tenosynovitis treatment, but they're all slowly getting on board. As of this evening I finally got 3 days of OT scheduled but they are late in the day and Selene falls asleep! Blerg! When school starts this also means I'll pick her up at 12:15, run home to eat lunch, then off to a late therapy at 3. Don't even ask how I'm handling the thought of Kalina's nap schedule.  We also finally have a PT eval on Thursday to get those appointments added in.

She was apprehensive on Monday and almost refused to participate. Thankfully OT is basically crafts and games and playtime and she eventually warmed up. On the way out she even declared "I thought that was going to be bad, but I like playing!" Today was a little better though I still can't leave.  Hopefully in the next few visits I'll be able to let her focus with Ms. Erin instead of sitting in my lap for everything (Erin called it her safe space, which is sort of sweet and sort of annoying at the same time).

Changing topics, I'm missing my other crazy girls! Apparently yesterday Kalina ran into the ocean over and over again laughing as the waves crashed into her. I wish so badly I had seen it! Having one kid has been interesting. First, Selene plays independently much more when the other girls are here, even if she's not interacting with them. She's really been needy of my attention for play which is unlike her. I also have learned that Selene on steroids is awful. She's always hungry and has mood swings.  She also makes more of a mess than I gave her credit for, no more blaming it on Kalina!

We are going to call a few times tomorrow to see if we can grab any cancellations because at this point there are no openings for spots tomorrow or Friday. They really need to hire more therapists! And build a CHOP specialty center in Lansdale...

Anyway, there's your boring update! I'm seeing glimpses of light shinning through what seemed like solidly closed doors. Thank you for all of the prayers and thoughts!

Falling asleep on the drive.

puzzles and peanuts

This face!

Let's not talk about her sugar consumption this week...

FT with my Toots!!!

Ups, Downs, and Thank Yous

For a slight change of pace (and certainly a decline in quality), this evening's blog post is brought to you by Dan instead of the always wonderful Jen.

It's been a dramatically up  and down week.  If you're reading this, you know the adventures that Selene has already been through, and we're still learning more about the challenges that we have in front of us.  We're also blessed to have time with some of our family- we are down in OCNJ with my Uncle Paul & Aunt Jane, my parents, my siblings (sans Matthew),  my cousins Josh & Hannah, and a few fun sightings of other family (thanks again Aunt Mary & Uncle Frank!). Even in the midst of all this, we're trying to realize how great we truly have it- times spent laughing with family and making snarky Olympic-related comments don't happen every day!  We even had a chance to get Selene flying a kite- it was the happiest we've seen her in quite a while.  She also was MUCH better at it than I was...not a high bar.

On the medical update side of life, we kicked off all our medications this week...and they're nasty.  2x a day of steroids (we think the 'roid rage kicked in today- and she already was a lil feisty!), Zoloft and Zofran as needed, and a daily dose of a very potent drug called Imatinib as the cornerstone of the medication party.  The problem- Imatinib seems to have a flavor somewhere between cat pee and battery acid, so Selene really seemed to enjoy the first round of it today :-/.  Tears, pink lemonade, 2 Oreos, and promises of ice cream limped us thru the 30 minutes it took to down the 100mls required.  It's going to be a struggle to figure out how to make this a little more bearable. PT is also kicking off on Monday, which will certainly be it a treat :-)

_______________________________________________________________________________________

I stole the update duties from Jen today not because I'm particularly eloquent but because I have been so touched by the outpouring of support that we've received over the last few days.  We have received notes from family, friends, coworkers, long-lost colleagues, community members, and more.  Even as I struggled with what this all means and how we can keep pushing through, we received so many kind comments and well wishes.  Just a short set, to set the tone:

• "You'll push through this- ya did last time, this'll be no different!"

• "Stay grounded in faith- you and your family are constantly in our prayers."

• "You & yours are in my thoughts and prayers"

• "Your family will always be there for you- we'll drop anything to support you and your kids."

• "Selene is one strong fighter and will beat this too!"

• "Ask anything- never feel like you're a burden."

The crazy part- this is just a small subset of the outreach that we have received. I am typically inclined to play things pretty close to the vest and try to hide how I feel about things...but I don't know where Jen and I would be right now without all the love and support we've received.  To everyone who has reached out, shared their support, gave a hug, had our backs- it is appreciated more than we can say in any form or format.

As my wife so appropriately said two days ago, and as a friend I've not spoken to in a few years reminded me, all we can do now is have faith in God's hand and His guidance for our absolutely amazing doctors.  There's a reason that we felt called to stay in this area, to do our best to honor what He would want for our family, and to continue to build our lives in this area.  We are encouraged by everyone around us, and are excited to continue to work with amazing people to support Selene's health.

And now, what you really actually came for- the cute pictures of the kids.  Much love to you all,

DB

Prepping for a CT scan- all seems normal on that front

Selene is more successful at flying a kite than I've ever been...

Don't worry if she's given you the side-eye recently- she gives it to EVERYBODY.

Fun times at the beach!

Somebody loves the waves.  A real surprise for everyone, to be sure.

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.

Pictures!

A few photos from our past few months, for those thinking of us but who aren't on Facebook to see the inundation of posts!

Blogger completely rearranged the chronologic order of these(WHY!?), which drives me nuts! But Dan is handling bedtime solo at the minute and if I want him to still love me I need to go help, so they'll have to stay like this :-)

Ainsley's last day of school!

Girls and the Golden Gate!

The whole family at the Japenese Tea Gardens

Kalina's First Birthday!

Baptizing Kalina

She found Mommy's recital outfits!

So special to have my cousin, Brother Canice, perform the Baptism!

Getting an IV like a champ!

Scowling pre giggle juice

Giggle Juice in full effect!

Despite it all this is one happy girl

Lunch in the park

Appointments are meshing together, I think this was vaccines

Ortho, ie the wait from hell.

Sparklers at the beach for the Fourth!

"Take my picture Mommy"

A reward for her splint appointment.

<3

We didn't go out to the beach often bc of the heat, but she loved the waves!

After today's appointment, still smiling <3