Sunday, June 3, 2012

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 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!


  1. Sweet Emily,

    AJ and I so appreciate the updates. It's a humbling experience sitting here in Texas crying as we read your posts, wanting so badly to help in some way. We could barely get through the medical post. So much for one wee boy even though he's as tough as a worn leather Texas cowboy boot! If only we could box up all the warm hugs here in Texas and send them FedEx!!! The streets of New York would over flow with the love we all have for your family and those who have helped ya'll. How grateful we are knowing how much Heavenly Father and His beloved Son loves each of you and is taking your concerns to heart. With each breath you take He knows! With each step, each tear, each moment ... He knows!

    We marvel reading about your church family in NYC. As (two yeara) converts, we still experience moments of sheer wonder regarding the love shared by members of the church. For the moms and kids who made it possible for Graydon's birthday to be so special ....pure joy and sweetness! You are surrounded by love both here, there and I would suspect everywhere.

    AND the prom ... how cool for families to have the chance to cut loose for a brief moment in time. Graydon was a most handsome fellow decked out in black tux and top hat.

    We look forward having your family home. So many are praying for just along with prayers for a full recovery for Case. Reading your list of future life experiences you want for Case really made the tears flow ... my prayer each day for Case has included his full recovery, serving his mission and having a loving family of his own one day. Moms just think that way! AND Moms pray that way too.

    We love you guys!

    AJ and Cindy

  2. Thank you so much for the updates and all the pictures. You are all amazing and an inspiration to us all. Case is such a little trooper and I'm so proud to say he's our nephew. His smile is so priceless. We love you all...Kea, Mary-Jane, Cairah and Cáelum

  3. Emily. I am glad that the Lord sent that sweet little boy to your home. What a great mother you are and Chase is in good loving arms. You are a tough cookie and I know times and moments are hard, but you are up for doing hard stuff. I pray that you feel the Lord's hands lifting you up particularly when you need it most. We love you guys.

  4. I talked to Cindy the other day and she told me that I would laugh and cry while reading these posts. She was so right. You so remind me of our strong pioneer ancestors from days past...pushing and pulling along the way and keeping a positive outlook regardless of the boulders that may block your path. I truly believe that you will reach "the promised land"... maybe a little exhausted and weather worn, but intact and healthy and ready for many milestones to come. We sure do love you and pray often. Welcome home!


  5. Emily and Xavier,

    Jeremy and I have been following your blog and have been praying for Case ever since this whole thing started. So glad to see that he came out of surgery strong! We pray that he continues to grow strong as he gets better! We continue to donate blood in Case's name, and would like to help out in any other ways we can. If there is ever anything Jeremy and I can do for y'all, please don't hesitate! Anything at all!

    God bless you all!