Tuesday, June 26, 2012


The hair that is no more...

Graydon's "fort" in Case's room

TPN - IV Nutrition. White stuff is liquid fat, and the pee-looking stuff is minerals, vitamins, carbohydrates, etc.

Ignore the messy room, but check out our big corner windows and view of the surrounding pastures and pond. Every room here has this view.

Enjoying a popsicle

Looking like an old man laying in bed

This is the end of "This Little Piggie" song when the little piggie went wee-wee-wee all the way home

Sunday, June 24, 2012

...and we are still in the hospital

Just a short note... Still in the hospital. We are at two weeks now...ugh. Case is doing so much better! His personality is back and it's so good to see him laugh, smile, and to hear him babble. I can't go into detail, but things were pretty scary at times last week, and I can't tell you how many times we have heard something to the effect of "this is a really dangerous tumor." Okay, we got the idea.

Case still has the chest tube and it is still draining, but it's much less. He is now getting a formula fed into his stomach through an NG tube (nasal gastric - tube in his nose), and he is being weaned off the IV nutrition. He is also eating a bit by mouth...pretzels and the like. We are both mourning the fact that nursing is over. Breastmilk is 50% fat, which is way too high for his leaking lymph system. I was told that it would be about 1-2 months until I could nurse him again,and then it would be time for surgery #2 and then it would start all over again. So we decided it was over...sad.

I spent the day home with Graydon and when I came back several bald, patchy spots on Case's head were staring me in the face. His hair is EVERYWHERE. I itch with his hair all over my arms. When he lost it the first time he didn't have as much. Now he has a full head of hair to shed. The pictures don't show that he has so much hair, but that's because his hair is the same color as his skin. His pillow is covered in hair. He touches his head and comes away with a clump stuck to his little fingertips. I hate this.

I am really hoping that we get to have the chest tube removed Wed or Thurs, which means maybe going home this weekend. It would be lovely to spend a few days at home together before coming back the next Monday to start round 2 of chemo. Here's to hoping and praying!

Wednesday, June 20, 2012

"Cap for Case" Leather Firefighter Helmet Raffle

CAP FOR CASE Leather Helmet Raffle: Case's uncle, Chris Hall (Allen Professional Firefighter Association), is raffling off a Cairns/MSA Sam Houston Black Leather Firefighter Helmet model N6AKD (bourkes and goggles included, est. retail $760) to help pay for Case's medical expenses and neuroblastoma cancer research. Raffle tickets are $10. The winning ticket will be by Case on September 11, 2012. Special thanks to Cairns/MSA for graciously donating the helmet for the raffle!

Monday, June 18, 2012

Medical Madness

We have had a rough week. We got home to Texas late Tuesday, June 5th. We "enjoyed" 5 days at home, and I put that in para thesis because Case was a mess. I know I said after chemo we had to deal with "angry baby," but it didn't know the definition of it. After surgery he was so bitter, angry, and unhappy. I can't blame him, but it made life miserable for everyone involved.

Anyway, the very morning he started to seem more like himself, we checked into our regular hospital here in Texas for his first dose of high-risk, high-dose chemo. He didn't even have a chance to be happy! This chemo is 4 times the strength of what he received before. Or doctor said it was like throwing a huge bucket of barf in his face! But the nausea proved to be not even the issue.

I noticed on Wednesday night that he felt hot and, lo and behold, he had a fever. He also was breathing shallowly. So long story short, by the next morning, he was transferred to the Intensive Care Unit and had a breathing cannula (the breathing tube that sits in his nostrils). Turns out he had a ton of fluid on his lungs. I think to date he has had about eight X-rays!

He was sedated on Friday, they aspirated some fluid from his chest (drew fluid out through a needle). That wasn't sufficient, so Saturday he had a breathing tube put in, a chest tube put in, and a small tube down his nose that goes to his stomach. A ton of fluid has come out (over 1000 mL), which is great. He got the breathing tube out and is not sedated anymore (he had been sedated for 2 full days).

So we are on the mend, but still have a lot ahead of us. The fluid build up is leaking from his lymph system, which apparently never healed from surgery. He had a lot of lymph nodes removed and apparently you can't stitch up the lymph system, it just has to heal on its own.

Want to know how it heals? He can't eat for 2 weeks. Yep, he can't eat. Doesnt seem right, does it? When you eat the lymph system carries away extra waste, so to get the lymph to not flow, you don't give it anything to cary away. He is on IV nutrition. I am just really sad because I can't nurse him at all, and that really sustained him through past chemos and stressful times.

So as if having cancer and going through chemo wasn't enough to deal with, we have even more trash dumped onto our laps. We will be here at least another week, if not longer. He is already neutropenia, so if he gets a fever, we have to stay longer. By the time he might feel ready to go home, it will probably be time for round 2 of chemo. Boo! I am trying not to think about that. As usual, just pray for our little boy. He needs comfort and he needs a brief respite from all these medical emergencies he is having. He has such a long road of treatment ahead of him, and these "road bumps" (so much more than that) are only prolonging the treatment and misery! Poor boy.

Drink More Pepsi!

The highlight of my 30-day adventure in New York was going home! Through an awesome non-profit organization called Corporate Angel, that coordinates flights for cancer patients in corporate jets, we flew home in style! My mom, Case, and I flew home on a PesciCo jet.The sent a car to come pick us up, no security lines, no showing ID, no taking shoes off! They carried our bags for us, we hung out in a posh lounge watching TV, had plenty of yummy chips to eat (PesciCo owns Frito-Lay) and drinks to drink! The plane itself was gorgeous and we were free to do whatever we wanted. I think the best part was landing... 30 seconds after coming to a stop, the door was opened, we were off, our bags were brought to our waiting car, and we were off. So incredibly fast and smooth. If there are any perks to living through cancer, it would be this!The man pictures below is the Vice President of PepsciCo that we were flying with.Thank you PepsciCo and Corporate Angel for being AMAZING!

Sunday, June 3, 2012

Updates and Disclaimers

Check out this cutie!  This picture was taken the night before surgery.  Can’t wait to get him back to this.

There are new posts below to read.  It’s either feast or famine around here.
I have received a lot of emails and texts asking about how things are.  I apologize profusely to you for not responding yet, but please read these posts as your own personal reply!  Thank you for still checking on us, even when I never return the message!
And I have meant to make this DISCLAIMER for months and am finally doing it.  There will be typos, grammatical errors, and misspelled words on my blog.  It takes a huge effort for me to get these out and I don’t have time to read over them.  So please ignore the errors, and please know that I do have a college education!

Surgery Recap and The Plan

I know we should have been posting more frequently, but frankly, it is an overwhelming task sometimes.  To say that we have been on a roller coaster ride is the least.  Our sweet little boy has been through so much, and unfortunately, will have to go through so much more.  So I am going to try to be brief.

Surgery went well.  Dr L was able to remove 95% of the tumor.  What is left is some lymph nodes up high in his chest on the left side and some infected lymph nodes in his mesentery (i.e. a "netting" of blood vessels, tissue, lymph nodes and more that support and holds the intestines in their wiggly, curling space). 

Case literally shocked the doctors with his amazing recovery.  All time estimations of his recovery were slashed in half.  He was sedated for less than 24 hour after surgery.  Left the PICU about 36 hours after surgery.  Spent 5 days/4 nights in the POU and only 1 night on the "regular floor."  Case was discharged Thursday afternoon, not even quite one full week from when surgery finished (8:30 pm the previous Thursday).  He walked on the 3rd day following surgery.

So we are not all together too surprised by our strong little man.  One of our beloved Texas friends described Case as "one tough leather boot!"  So true.  Although he is so strong, it has been hard.  He has been so grumpy, the poor little guy. It is completely understandable as to why he is so grumpy, and I feel horrible watching him suffer and not knowing exactly how to help.  He is still behind in his communication and the lack of words is making for a really unfair guessing game.

 Eating has been really rough.  Thank goodness I am still nursing him, because that is the only thing he really wants to do.  However, since he is 17 months, that is not going to sustain him forever.  So we have seen him drop a lot of weight and get all skinny and "concentration-camp-ish" again. 

We are at our apartment just hanging out and letting him recover.  He came "home" with a drainage tube coming out of his abdomen.  It was removed on Friday, thank goodness.  We go in on Monday for one last check up and hopefully will fly home on Tuesday or Wednesday.  Xavier, Graydon, and my father-in-law flew home to Texas today, leaving my mom, me, and Case behind.

We met with Dr. Kushner, one of the Neuroblastoma oncologist up here at MSKCC, on Friday.  He was so amazing and spend over an hour explaining our upcoming treatment and answering all of our questions.  In a nutshell, we have a "plan" to follow, but a lot of future treatments will have to be determined as we go along, seeing how scans look.

  • A week after we get home, on Monday June 11, we start chemo again.  Blah, not looking forward to it.  He will be there 4 days, then we'll have about 4 good days at home. 
  • Then Dr. Kushner said that he will get a fever and have to be hospitalized for about a week before his counts will recover.  He will be getting about 4 times the amount of chemo than he got before - yikes. 
  •  After that he'll have a CT scan to look at things post-surgery. 
  • Then we will probably go in for stem cell therapy (more on that in other posts, I'm sure, but about 4 or 5 days in the hospital in Dallas). 
  • Then he'll either start round 2 of chemo or come back up here to MSKCC for a second surgery to remove the lymph nodes that couldn't be removed in this surgery.  So I'm not sure if round 2 of chemo or round 2 of surgery will come first, but either way, he'll be getting both! 
  • Then we'll probably follow up with radiation treatment up here (7 straight days) at MSKCC in conjunction with more chemo on those days. 
  • After that...I don't know.  There is a lot more treatment that he could do, but we're hoping that's it.

Overall, we feel really hopeful.  Dr. Kushner really feels that Case will be CURED one day.  I feel like there is a lot of really yucky stuff (to put it lightly and to keep it family-friendly) ahead of us.  I'm honestly dreading it, but I'm trying to focus on the future...on Case starting Kindergarten...playing football in high school...going on a mission for our church...making me a happy grandma!!  In the here and now I need Case to start eating so that he can be as healthy as possible before crazy-yucky-chemo starts next week.

We are forever grateful for everyone's prayers, thoughts, concern, and good deeds towards us and our family.  Everything is felt and appreciated.  Now enjoy the pictures!

Angry and fasting before surgery

In the PICU all hooked up

On the bright side, our PICU room was right on the East River and we watched boats of all sizes going by

Awake the next day!

Breathing tube down the throat removed (still has nasal drainage tube coming from the stomach)

In the POU!

Getting "PT" from nurse Bonita.  He had so much fluid stuck in his lungs and he doesn't know to cough it up.  So you pound a little plastic thing on their backs to break up the fluid - he wasn't a fan.  Note that Graydon is doing it to Bonita!

Isn't he still so handsome, even with all the tape and the tube!?

First smile since surgery!  Notice no tubes!!

First "solid" feeding - jello

A brief smile with Daddy - these don't last long

I know this is a really sad picture, but I needed to post a "real" picture, not just the one or two pictures we got of him smiling.  It's easy to only post the nice looking pictures, but reality bites.

My poor, sad, sweet boy has been around way too many doctors and nurses.  Dr L gave him his stethoscope, and what does he do with it?  Puts it around his own neck just like they do after listening to his heart and lungs.  He did this of his own accord.  So cute...so sad!

Our hero, Dr L.  Again, Case isn't too thrilled!
Case at "home" hanging out watching TV (with his "tail" - his drainage bag).  So glad that is gone!

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