Unexpected Visitations

B here.

I can't say enough how appreciative of all of the kindness we've been shown, we've gotten meals dropped off (at least three plates of thanksgiving meals, none of which H showed much interest in, but I put a hurting on them).  H has been able to spend afternoons with friends, which allows me to continue working, cards, prayers, positive energy, well wishes, and a couple of monetary donations as well.  We're immensely thankful for everyone's kindness.

C (and by extension J) seem to be stuck in the hospital for some undisclosed period, we first thought they'd be coming home on Friday, then Saturday, then by Sunday we figured they'd be there through Monday's chemo session, now we're hoping for Wednesday if we're lucky.  At least they're in a location where they can take care of C if he has difficulty, but I/we miss having C and J here.

Grandma and Grandpa braved holiday traffic and came down after thanksgiving for a week to week + 0.5 stay.  Unexpected and quite nice, as that reduces some of the burden on J and me, plus H gets new play toys, err I mean care providers.

We've taken some pics while C and J are in the pen, but the camera is stuck there as well.  Luckily Grandma brought her camera with her, so I've liberated a couple of pics from their trip to the hospital today.  It was also an extra special visit since it was the first time C got to meet his Gandpa (may there be many more).

I'll leave you with a selection of pics:

Apparently teeth don't stop for chemo

We're extremely happy to see C enjoying some toys again

Mommy gets some cuddle time

 H was trying hard to blow up the "balloon"

 Hey, how did Grandma get her to stay still and smile?

 At first C gave grandpa some serious inspection

 

C made him work for it

 But eventually C gave Grandpa the stamp of approval.

 Dr H getting suited up

 H exhibiting some excellent chair side manners

And H striking a pose, she made Grandma work for this one

- b out

H's Letters...

JD and family helped us out with H today on short notice while we were at the clinic with C, I don't know what we'd have done without all of the support we've received with H lately.

Here is a picture of H and E playing in the leaves, H reminded E that she should be "crunching" the leaves.  E has grown so fast, she is amazing, not even a year and walking like a pro!

H has been doing great with drawing her letters lately too, she can do A's, O's, C's (I think she started with C's...), and now T's and H's!  Here she is demonstrating some of her fabulous H's today...  Maybe soon she'll be able to write her name!  ;)

Nap time...

No pic today, but today the kids napped concurrently and I was able to snuggle with C for a nap myself.  It was a nice moment to share, and we both were tired as he's been waking up screaming more and more during the night.  I tickled his feet on the changing mat after he woke up and elicited several adorable baby chortles.  :) <3

Fall walk...

Today was a lovely sunny fall day so despite some tummy trouble with C that hasn't quite resolved itself (add to that cutting a new tooth on top, lovely timing, poor babe), and H managing to come down with a runny nose and harsh cough today, we took a little stroll and did some leaf collecting...

C was calm in the carrier despite having a pretty rough day...

And I thought this was neat, a Christmas cactus that the previous owners left out on the porch when they moved out, we never touched it for months, finally one day a few weeks ago B brought it in, it looked quite pitiful, discolored and almost wrinkly...  Now it is looking great and in full bloom, a little bit of fall cheer...

Updates on C...

In case we forgot to pass this link along to any one reading here:  http://www.caringbridge.org/visit/caseykropf/journal

I updated there just now and may not always post the same updates here, where I post more pictures (the other is more treatment specific).  B is also working on a site to organize meals and other assistance if folks would like to help on Losta Helping Hands, will post a link when it is up and running.

No hospital pics, but here is a shot of C from just now while I was starting dinner, enjoying a familiar setting again... 

Photo follies...

Since as of tomorrow pictures (at least without hats) won't really be the same any more, we tried one last time this weekend to get one good photo of the four of us.  Not in the cards.  :)

We tried a photo place, couldn't get a morning appointment so woke the kids up from naps to go in the afternoon, only to be told at the store that they run an hour or more behind schedule and their policy is that they don't call to tell you they're running *way* behind.  Since dinner time was fast approaching, we couldn't wait so we tried our luck ourselves in the back yard with comical results.

 
Oh well, we managed to crop out a parental pair shot, and cobble some random kid shots in to make a photo card.  I'm sad I never got around to getting better shots of C, the best we have are from around 3 months, pre-smiles.  The rest are mostly indoor with flash type action shots.  I used the most recent symmetrical smile shot we had for the card from around the Green Fest time, that's how I'd like folks to picture him since that's how I remember his smile too.  :)

Moments catch up:  Fun with boxes...

Playing on the mat...

Little drummer boy...

Falling leaves...

H and Daddy did some raking today...

H really got into it....

Rub a dub dub 2 lil' monkeys in a tub...

And finally, an update on C after today's appt.: Spoke with Dr. Roger Packer (neurologist) as well as the neurosurgeon Dr. Myseros and our oncologist Dr. Chao with Children's National Medical Center, they are recommending starting the Dana Farber protocol next week after surgery to implant the ommaya reservoir (more brain surgery, a way to get the chemo to the brain directly) on Monday, and also another MRI as they saw a little spot in the same place on the other side of his brain that they are concerned with (possible 2nd tumor).

Because the cancer cells are loose in the fluid and we have potentially more than one tumor site, in a bad location and impacting nerve function, they reiterated that C is a poor candidate for surgery or radiation (no one location to attack).

The goal is to try the chemo for 2 months (switching from delivery into the spine then the ommaya reservoir every other week) and see if there has been any improvement. They said the high dose chemo treatment (children's oncology group protocol?) could be an alternative to consider if this does not show signs of improvement, or they may just recommend we let him go at that point.

They were quite up front about his chances being extremely poor due to his age and the inoperability of the tumor and potential spreading of the cancer. We appreciated that. We will also be doing the genetic testing ourselves and for our other child. In the mean time, just trying to enjoy our little family and not think too hard about the future.

brother and sister enjoying each other...

there were several times today when the kids were right back in their previous practice of cuddling and giggling, it is so adorable to watch, h will say she loves her c...  :)  here is one bout i captured:

Moments catch up...

Here are some of the moments we captured over the weekend through today, some that we didn't that I can recall include C & H (our 2 little monkeys) bouncing on H's bed (C assisted by Daddy), they were both giggling out loud, kids love bouncing on the bed at all ages I guess!

H has this idea that toys soothe C, so she piles them up on him to "make him feel better"...  :)

C still giggles when we nibble the side of his belly, big drooly baby giggles...

Enjoying my baby sleeping on my shoulder peacefully...

The rest are from today's walk, H finds an interesting leaf...

H gives daddy a big smooch...

C against the fall leaves...

Gratitude

While C was in the hospital I never left him unless I was physically made to (surgeries and MRIs).  This was only possible because of the kindness of friends and family who helped us through that difficult time.  Friends took turns watching H when B had to return to work, and Grandma flew in for a long weekend to help out (even cleaning the microwave, that made me smile this weekend when I noticed it despite the fatigue :) and make sure H still had a chance to enjoy her first real Trick or Treat excursion.  Here are a couple of pics from that week.  Thanks again, we really benefited greatly from knowing our daughter was in good hands while we were separated, and we appreciate all the ways we've received help from prayers and good thoughts (much needed now) to a warm meal and beyond...

At the hospital...

Big hugs to Gma....

First cotton candy at Burke Lake Park, Ghost Train ride...  (she decided she didn't care for it after the first bite...)

Home

Last night C and I came home after 9 days in the hospital.  These were the darkest days of our lives to say the least.  I won't recount the experience here as this blog was intended to be light, but I will share that we learned that our seemingly healthy perfect baby boy has a terribly malignant, inoperable, rare and deadly type of brain tumor, ATRT. 

I only wish I had seen this coming sooner to potentially have improved the outcome, but I also feel like some part of me always knew this was coming in some way.  Our little boy was a beautiful gift to complete our family, it had seemed as though we couldn't ask for anything more, and of course we've never been that lucky to expect that we could hold onto this moment of perfection. 

While I'm sure the darkness that we feel at this time in our lives will of course touch these pages to come, I'm trying to keep in the moment.  Just like many things that seemed to fall in line with this moment, the name of this blog could never be more true.  The past is most certainly history, those thoughts and dreams are long gone and will not be recaptured.  The future, though bleak, is of course a mystery, and frankly I'm happy to let it remain that way for as long as we can manage it, that is really the goal now.  All we have is today, and going forward I'll try to update more frequently with images and notes of the special happier moments we'd like to keep in mind in the future, while we are together, however long that may be.

For today, here is a picture of our first meal together at home, late last night after we finally got home from the hospital, enjoying takeout pizza from Tony's and of course, Mum-Mums...

C seems so much happier now that he is home, I've heard him laugh several times, and smile more, and he is enjoying being able to play unfettered by IV lines, despite his recent surgeries.  He has developed a fine pincer grasp recently, here he is picking up a little puffed cereal...