Pediatric Prom 2012!

May 31, 2012 Graydon and I went to prom!!  MSKCC each year holds a "Pediatric Prom" where patients and families can get dressed up, dance, and party the day away.  It was really an amazing event. 

For two weeks leading up to Prom the playroom was turned into "Promingdales" (Prom + Bloomingdales).  There were racks and racks of formal dresses where patients and families could "shop" and pick out a dress.  Some of the dresses where brand new, others had been worn once and donated.  Cool thing is, once you pick a dress, it's yours forever!  It was fun picking through things.

Graydon was so excited.  It was so cute and tender to see him get so anxious and excited to go to "the dance party with mommy."  We got our clothes about two weeks before Prom and he had to get dressed up several times to practice our dance.

The dance was in the morning and they had a feast to eat from.  We were some of the first to get there and we danced it up for about an hour.  It was in the cafeteria of the hospital.  Case was being grumpy in his hospital room, so it was just G and mommy.  Graydon wanted to be a "king" and I was his "princess," hence the tiara I am sporting!



Graydon jumping on the dance floor before the big crowds joined in.

As I sat and watched for a bit I realized the strong dichotomy taking place before me.  The families and patients were having a BLAST at the dance.  Everyone just kind of let loose and relaxed while boogying to the awesome music.  Some cute little girls were dancing like crazy on a stage for about an hour.  Then on the other side I just felt like the situation was so tragic, and I found myself wiping away tears!  It was sad that something so "easy" and "small" meant so much to so many people.  It is one of the few fun things that ever occurs in an oncology hospital.  I am just thankful for so many volunteers who made it happen!  Again, people are GOOD!

Happy 4th Birthday, Graydon!

Graydon had a fantastic 4th birthday up here in New York!  It started with the opening of presents, and thanks to friends and family for mailing packages to our apartment up here!  Then he had a big old birthday party!!  Not what you expected to read, huh?  Well, there are some girls at the local congregation of our church here in the Upper East Side that threw him a big birthday bash! 

(Side note: That's what's great about an international church - it's the same wherever you go and you can find a congregation wherever you go! So we have been well supported with hot meals and many offers of help).

So a friend named Suzy took it upon herself to plan a party and invite all the little kiddos she knew.  All we did was show up!  Isn't that amazing?  She kept saying that "she didn't really do anything," but scroll through and you'll see that is not true!  So many moms showed up with their kids for a party of a little boy they didn't even know.  If you ever feel like the glass is half empty, let me tell you, it's not.  PEOPLE ARE GOOD.  For all the bad that is out there, there are just as many very, very good people who love others and just want to do good.  Spread the love and enjoy the pictures!

G's NYC best friend, Will - Suzy's son

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!