Case continues to recover

Case's doctors in New York continue to be amazed at how well he is recovering, despite having gone through a major surgery. It turns out that the tumor was more connected than previously thought. In fact, they ended up removing 50% of his pancreas, 40% of his lower intestine, his appendix, and gallbladder. If things continue to go well, there is a high likelihood that they will be able to come home by the end of the week!

Watching cartoons.

Surgery Update

Today, Case underwent a nine-hour surgical procedure performed by Dr. La Quaglia to remove Case's neuroblastoma. Case was really strong, and all of his vitals were perfect throughout the surgery. Dr. La Quaglia was able to remove 95% of the neuroblastoma, but he fears that the tumor has become high risk. We will know more once we get the pathology results in one week, but it is likely that Case will need further treatment (specifically, chemotherapy, radiation, antibody treatment, and another surgery).

Thank you for your prayers and support. We are grateful that the surgery went so well today. We continue to pray that Case will recover from his surgery, and that those who are caring for him will have the inspiration they need to help him.

Just right around the corner...

Saturday was the most beautiful day weather-wise.  X and I took Graydon on a "date" on a gondola tram across the East River to Roosevelt Island (a long sliver of an island between Manhatten and Queens).  It was so much fun because it was quiet with open spaces over there.  So very relaxing!

Later we went to Central Park, and apparently half of NYC also goes to Central Park on Saturdays, but we still had fun.  The boys got balloon swords and played "explorer" all over the rocks.

Case taking a break.

This is maybe my new favorite picture of my sweet boy, Graydon.  He will turn 4 years old next Wednesday.  I feel really bad about him missing out on a normal birthday party experience.  He has been saying lately, "I miss my friends and my cousins in McKinney, TX."  Poor guy.  I love him so much.

Monday we took Graydon to the 9/11 Memorial.  Case stayed home, due to naptime and our ever-present need to keep him clear of germs.  Thankfully Granddad volunteered to stay back with him.  It was the wettest, sloppiest day ever, but we came out with all our rain gear on and survived.  Graydon and I are standing in front of the only tree from the original site that survived the attacks 10.5 years ago.  Amazing!

The North Reflecting Pool (with the new Tower One being constructed in the background). 

It was emotional explaining to Graydon what happened here.  He kept saying that the bad guys "made the wrong choice."  But that sweet boy got a smile on his face and said, "but it's okay because they [referring to the innocent people killed] are alive in Heaven!!"

Even more emotional was our pre-opp appointment today for this adorable boy.  The nurses were describing how everything will be.  I was surprised when she kept listing off different tubes that will be coming out of him in all these different places.  Seriously, there is a tube in almost every orifice, in addition to 3-4 coming out of his chest!  He will go straight into the pediatric intensive care unit (PICU), of which MSKCC does not have.  So he'll go "across the street" in an ambulance after surgery to the Cornell University Hospital and will be there for 2-3 days, or until he can breathe on his own.  He will also be kept sedated for 3 days.  All of that news just hit me hard and I definitely felt raw.  It's just so sad to see your baby like that.

After he is awake and breathing on his own, he will come back across the street to MSKCC and will go to their pediatric observation unit (POU - they pronounce it like "pooh" and it kills me.  Seriously, they want me to keep a straight face everytime they say Case will be in the "pooh?"  Can they not call it the P-O-U or pronounce it "po?").  Once he is there it will be straight into hard-core recovery.  They want him to start walking again by Day 4 or 5.  Poor baby.

It's just all very overwhelming.  When taking the picture above I kept thinking, "this is the last cookie he'll eat for a very long time!"  I just want him better and I want everyone to go home.  But I am trying to focus on the task at hand - get Case cancer-free (or closer to that) and better!

We welcome all prayers from all walks of life - so please pray for our little boy.  We are praying for no complications and that he recovers speedily.

 Please pray for his amazing Dr. La Quaglia to be guided and inspired during surgery.  Dr. La Quaglia is definitely a believer in God.  Every time I say something like, "well, you are the best.  That's why we are here."  He says, "No.  There is only one best," and points up.  He is amazing.  He takes NO credit for the amazing life-saving skills that he has.  He is most definitely a very honed instrument that God can use to save our precious children.  I am just so grateful to this man for being humble enough so that he could be inspired, instead of being cocky and giving all credit to himself.

I will try to have my brother post a short update on this blog after surgery (which will be late Thursday night or Friday morning).  Until then, my friends, let's just keep praying, because this is all way beyond you and me!

Surgery Plan

Monday Dr. L called me "into his office" to talk about Case's scans.  Based on what he sees, he just doesn't think he will be able to avoid a Whipple Procedure.  I am not surprised.  Although I don't want my baby to go through all of that removal and re-plumbing, I'm okay with it.  Would I rather my child have digestive issues over dying of cancer?  Um, Yes!  So we'll take what we can get!

The doctors here just aren't comfortable leaving large parts of the tumor in Case.  The "live" part of the tumor is just completely integrated with the head of the pancreas.  There is a chromosomal composition within the cancer cells (like MYC-N) called ploidy.  If the cells are "hyper-ploidy," they are less aggressive.  If the cells are "diploid," they tend to be more aggressive and grow back.  Case, unfortunately, is diploid.  It's not as big of a deal as MYC-N, but it just leaves the doctors wanting all of it out; not wanting to sit and watch to see if it would grow back.

Also considering the diploid factor, we will probably follow up with a round or two of a new chemo that Case hasn't had yet.  That would take place back home, thank goodness.  Although I don't want to do that, and I don't want Case to loose his hair AGAIN, it's an easy enough solution to try to safeguard Case against a relapse.

Dr. L will try to remove the affected lymph nodes, but his main concentration will be this huge (although shrunken) tumor encompassing his intestines and many vessels.  So we might have to come back up here for a second surgery if he's not able to remove all the lymph nodes.  The incision for the Whipple procedure will be on his front and will go from right under the middle of last ribs and will follow his rib line down his right side.  To remove all the lymph nodes Dr L will need to make an incision actually inbetween his ribs under his right arm pit.  So again, that might be a second surgery a few months later.

Dr. L said that he would be inpatient from 1-2 weeks.  The depressing part to me is that Case needs to hang around here after discharge until he is travel worthy.  I thought a day or two, but it's usually one to two weeks!!  I feel like I should fill out a change of address form with the Post Office for all the time I'll be here...probably six weeks.  X needs to be back in Texas by June 4th because he has a new therapist starting at his clinic.  Colin and Graydon will probably go home then too, because our 30-day lease will expire June 7th.  At that point my mom will stay with us until we go home.  We will probably be at the Ronald McDonald House since our apartment is already leased out after our original term.  So complicated.

Anyway, that's the update.  Surgery is still on for next week, Thursday May 24th!

New York Living

Went on a "date" to the Metropolitan Museum of Art Saturday night.  It was awesome.  We loved it.  It took us 30 minutes to walk there, had 30 minutes inside before closing, and then 30 minutes

Mother's Day 2012 - looks happy, in reality, not so much.  X had to leave at 7:00 am to catch a flight home.  Then Case got a fever, which means I had to call the doctors here and go into the Urgent Care clinic at MSKCC.  It was strange because I am so used to a Children's Hospital, but MSKCC is a cancer hospital for all ages.  The Urgent Care center was sad to me.  Mostly sickly adults.  I could see into their curtained off "rooms" and some were crying, others moaning.  Luckily we got an actual room.

I love Case's cute guilty look here, like, "Yeah, Mom, I know.  Not the best Mother's Day.  Sorry!"

So we did the obligatory port access, blood tests, blood cultures, and antibiotic drip.

We actually had some really good one on one time just singing and playing.  Case has started singing along with us.  It's awesome...it's a loud forced constant laugh.  It attracts stares during hymns at church.  I love it.

Graydon can do the fireman pole all by himself now and is quite proud.  Granddad has taught him lots of things on the playground!

This is the entrance to our apartment building, Stonehenge 65.  Graydon and I were coming back from grocery shopping and a doctor's visit.  Graydon has another stomach bug and warranted a trip to a doctor here.  The docs at MSKCC told me to go to the ER at a local hospital here...um, no.  I googled and found a pediatrician here.  The office was in a basement of a really nice apartment building here, and to get there you had  to take a mini elevator in the back of family practice office space just off the building's foyer.  I'm still not used to how people adjust to such limited space here in the city.  It's creative, to say the least.

The boys adore the elevators here.  Graydon is a little doorman and always stands to the side with his arm in front of the door until everyone is out (or in) safely.  Case takes each opportunity to dance in the elevator!

Pushing the button on our 5th floor

Here's the family room of our apartment.  I feel like it's pretty big.  It's worked.

Our kitchen is really pretty (ignore the stern, concentrating look X has!)

Today Granddad celebrated his 60th birthday in style here in NYC!  We gave him the "day off" from his nannying duties, and he spent 8 hours wandering through Central Park and window shopping.  We had a birthday celebration complete with balloons, ice cream, and cupcakes.

Case rocked the cupcake!  He first went for the frosting, obviously, but we all watched on in complete wonder as he finger painted his stomach with the frosting.  It was awesome.  It wasn't a mistake...he purposely smeared it all over his belly!

Today we watched 8 fire trucks rush by our building and stop just one block away, so we had to go investigate.  We got there at the end, but apparently there was an apartment fire several floors up.  So we got to see the ladders in action, hoses unreeled, streets flooded, and firemen in full gear with axes and those long spear things (Chris, what are they called?).  It was pretty neat to see them in action.

Two days ago we watched President Obama motorcade go by our apartment building.  He was speaking at a college's graduation ceremony and there was a ton of security and hubbub surrounding his arrival.  We appreciated watching it from our window!

Thanks to Janelle and Cindy's suggestion, we now have a box fan in our bedroom.  So that, combined with our noise machine, and the totally ghetto blanket I have covering our window, we have effectively blocked out not only the street noise, but most of the construction noise too.  Case is taking regular naps and sleeping (mostly) through the night.  Hooray!

We are actually adjusting quite well to city life.  The boys love it and are fully entertained walking the streets.  I just hate that we do so little in order to avoid germs (which we apparently aren't doing too well - in addition to myself nursing a cold!).  So besides missing X, missing having my own bedroom, and just wanting to get the surgery over with, I kind of like being here.

I love the pedestrian lifestyle.  I thing running in Central Park with the other 5,000 people there is awesome!  There was a race taking place this past Saturday morning and so I just joined in and ran along with some people...even crossing the finish line!  I don't know why I'm still surprised at its beauty every time I'm there.  I love that I can walk to Bed Bath & Beyond, and the doorman there (yes, they have their own doorman) tie a cute little handle onto my packages for easy carrying.  I actually like grocery shopping everyday instead of one huge weekly shopping.  There is a stand right at our corner that sells produce for dirt cheap, and they are there 24 hours.  So there are some part of NYC that I'm really enjoying.

Still have one week to go til surgery!

One long haul...

Never mind, we are staying here.  Can our lives be any more transient or crazy?  Yes, I'm sure they could, but I am reaching my limit.  After thinking about things, it just sounded extravagant to fly home for 9 days, then turn around and come back.  Trust me, I would prefer to be home in Texas in the comfort of our own home, but we just felt like it was better for us to stay here.  Boo hoo.  Xavier is flying home on Sunday and coming back on Friday so that he can attend to things at work, because being away for 4+ weeks wasn't going to work.  My father in law and I will "hold down" the fort here. 

The "fort," by the way, is a 2-bedroom apartment that we have leased for 30 days.  My work is being the most amazing employer (especially since I haven't worked since Case was diagnosed) and paying for our accommodation up here.  So, so amazing!  So our apartment is 0.2 miles from MSKCC.  It's actually really spacious for a NYC apartment.  It's pretty nice.  I need to take pictures.  The boys and I share a room and Granddad has his own room.  The family room has plenty of room to play in.  There is a nice park (pictured below) a few steps down the road.  And it only took me 13 minutes to walk to Bloomingdale's on Park Avenue for some retail therapy today (the retail therapy actually occurring at H&M next door...can't afford Bloomingdale's, for sure!). 

Our main complaints?  The crazy, insane loud street noises that are a constant part of life.  And the unit next door that is going through a total gut renovation.  Hammers, saws, and construction workers yelling from 9:00 am to 5:30 pm every day has made nap time a struggle.  And the grocery store across the street that charges $6.99 for a package of Fig Newtons.  We don't like that.

The sand pit is a hit with Case at the neighborhood park

Case loves to play "peek-a-boo" in the coffee table in the lobby of our building each time we got off the elevator

This is what Case wants to do every time we walk out of our building, which makes going anywhere a struggle.

This is where Case should be sitting every time we walk out of our building, but this cutie usually is.

Check out Case's fuzzy head.  Love the hair!

Walking through Central Park - Case thought walking through the leaves was hilarious!

Yesterday we went to the Museum of Natural History.  Graydon loved it, Case not so much.  He kind of screamed the whole time.

 

But we forgave him, because he's cute.  This was our special date last night, just me and Case.  Xavier, Graydon, and Colin went to a Yankees game and Case was not happy being left behind, so we went to play.



Another happy Case swinging in NYC.  Remember the old one from our September trip last year before diagnosis?

Cute Case outside the Museum of Natural History

I'm behind 99% of every picture, so I made X take this picture to prove that I was there too.

And a final happy note: Case's port decided to start working again.  He had a CT Scan and 4 bone marrow biopsies today.  The poor little guy.  The bone marrow biopsies are basically little pieces of bone that they screw out of the front side and back side of each hip.  Ouch.

Coming Home

So we are actually going home on Saturday, without surgery.  Long story short, we will be coming back on May 22nd for surgery on the 24th.  When we first discovered this this morning we were all pretty angry and couldn't believe it, but now it seems like it was supposed to happen this way.  Several things have played a part in it.

 

1) Dr. L would have had to cancel other patients' surgeries to fit Case in sometime next week.  I thought we were set for Monday the 14th, but that was not the case.  When I mentioned it to him yesterday he grabbed his schedule book and was going over it with his assistant.  I knew it wasn't a good sign when I spotted them looking at May 27th!  So they say that they would have "slipped" him in next week, but we are starting to doubt it.  How do you slip in a 12 hour surgery?  And what about the kids whose surgeries would be cancelled for Case?

 

2) Case didn't have his CT Scan today.  Some of us forgot about the fasting this morning and he ate copius amounts of cereal!  I honestly think that this was all supposed to happen and that someone forgot for a "reason," but you can imagine how we felt when we realized the CT scan was off today because of breakfast!  The hospital couldn't get Case back into the schedule until Friday.  Ugh.  Friday is too late for Dr L to receive the scan and review it in time to cancel other patients' surgeries for early next week.  Apparently they wouldn't "slip" him in without having their own CT scan to look at.

 

3) His port is still not working.  Something is up because all tests are showing that it's clear (x-ray and EKG from today that also showed tubing to be clear).  This wouldn't cancel surgery all on its own, but it needs to be worked out beforehand.

 

So...we are going home on Saturday and coming back up a week and a half later!  It's just too hard living here in the city for us to stay here 2 weeks til his surgery, and it's too expensive.  We don't have to go to the hospital tomorrow, so we are going to visit some museums and have fun!! 

 

Want to know the cherry on the top?  Graydon caught a flu bug and was throwing up today and experiencing other yuckies.  He's on the mend now, though.  Let's all pray it doesn't spread!

 

Seems all like too much, right?  We are all feeling okay, which just re-instates the fact to me that this delay was meant to be.  So we'll see what kind of craziness we discover tomorrow, as each day as done so already!

Capes For Case

My amazing cousin, Brooke Jenkins, is doing a fundraiser for Case.  It's called CAPES FOR CASE.  How cute is that!  She has a sewing business, Red Brick Sewing, and sells awesome little kid capes.  They are reversible, for two super hero powers!  There are even some for girls!  $10 from every cape goes to Case's NYC expenditures, so please support her!  Check out her Etsy store or her Facebook page.

2 Days Down...Many More to Go!

 So here we are in New York.  Yesterday our flights went good, to not go into any detail.  I attribute it all to three things: 1) Ted and Jeanne Endsley and 2) Camille Rubsamen for making amazing snack and game packs for the boys and 3) the amazing ratio of 3 adults to 2 kids! 

The biggest downer of the day was arriving to our apartment and finding no crib for Case.  It was a rough night of him sleeping in the corner of the room in a "fort" (i.e. night stands turned on their side blocking him into the corner!).

One of the few smiles from Case today with his "IV cast"

Tonight Case is sleeping in a crib, no thanks to the people who were supposed to provide it.  At 6 pm tonight I decided that enough was enough, so I hopped in a cab, rode to the nearest baby store and bought a portable crib (even though we already own one in Texas).

Today was a super long and rough day at the hospital.  We met the surgeon, Dr. La Quaglia, and the oncologist, Dr. Kushner.  Love them both.  Nothing new really to present...just that we don't really know what day he will have surgery...hopefully soon. 

The rough spot hit when they tried to draw blood from his port.  They could inject fluid into the port, but couldn't get anything out!  So we first thought it would be a blood clot (although he was accessed 4 weeks ago and it shouldn't be a problem).  So we went through two rounds of injecting a medicine to sit in his tubing for one hour to dissolve any clots.  Neither of them worked. 

So then we went in for an X-ray to see if his tubing came out of the vessel it was supposed to be in.  The X-ray was so absolutely horrific!  They put him in a contraption where he sat on a mini bike looking seat in a hole in a table.  So his waist was at table height.  Then they put two halves of a clear plastic tube around him with his arms up and latched it together.  So from his waist up over his arms he was in a straight-jacket of a plastic tube (to keep him still so they could get a picture of his chest).  It was like Augustus stuck in the chocolate tube in "Charlie and the Chocolate Factory," only with his arms over his head.  He was irrate, and screaming, and it was HORRIBLE to watch!  Seriously one of the worst things I've been through with him.  But it was short...about 3 minutes.

The X-ray showed the tubing in place, but after replacing the port access, still no blood return.  So they finally had to do an IV in the crook of his arm.  He still has it in now.  They wrapped it all up with a board attached like a cast (you can see that in the pictures).  They will use that IV in the morning to sedate him for a CT scan and 4 bone marrow biopsies (front and back of both hips).  So we got home at about 4 pm.  If the port had worked, it would have been 11:30.  He napped for 30 minutes in my arms.  It was a bad day.

The boys were happy this evening once they were back together.  They love each other.

Graydon and Granddad played in the hospital playroom and on a city park for 2 hours.  They did pretty good.  I can't take ANY pictures in the hospital, so there won't be much photo documentation.  Let's pray that they can figure out what's going on with his port!

p.s. the city is so noisy!  Our windows open up onto a busy street.  It will take some getting used to!

We are flying up to NYC on Monday and will begin a slew of appointments and testings on Tuesday.  The doctors at MSKCC want to perform their own scans (CT and MRI) and maybe collect some new bone marrow biopsies (ouch!).  So we will be doing all of that next week and surgery will be Monday, May 14th.  Dr. L really doesn't know what kind of surgery he will do until he opens him up...not good for planning and strategizing, but oh well, what can you do?  I think we'll be there at least 3 weeks.  I spoke with Dr. L yesterday and he sounds awesome.  More on that later, but I had to do some kind of update!