This may not be the prettiest picture I've ever posted of Nate, but it's real, and really it's spectacular. As you'll notice, our little super hero did it again and he is sucking on his Nuk...not a breathing tube! He was able to come out of the OR off of the ventilator which means they also were able to take out the NG tube and we get to stay at MSKCC and not have to go across the street to the other hospital. They also didn't have to place the central line. So, he came out of the OR with 3 extra lines/tubes instead of 6. The sooner the tubes come out, the sooner he'll be ready to go home! The less tubes that have to come out, the better.
He is doing great. As you can imagine, he is in pain. He is on a good deal of pain medication to manage his pain and we are hoping he will mostly sleep tonight. Tomorrow, we will get him up and started walking. He has woken up a few times, briefly. Once to take off his pulse ox meter (the little sticker wrapped around his finger to monitor his vitals) and tell me that he wanted his catheter out. Never mind the giant gash in his side...he just wants that thing off his finger and that tube out of his penis! Poor kid, hopefully the catheter can come out tomorrow. Then he woke up to tell us that he wanted the oxygen mask off and his Nuk in. Wish granted, they'll just keep an eye on his oxygen levels and make sure everything stays good. The third time he asked us to turn on the TV, then fell back asleep before we got a chance to turn it on. So, we're currently watching the Disney Channel so he doesn't wake up to yell at us to change the channel to "kid shows". Such a little fighter!
The surgeon said that he lifted Nate's liver out and chopped out that tumor! Hooray! He did take some funny looking lymph nodes in the area that probably have Neuroblastoma in them. This is a little scary but is very normal, I guess. There are a lot of lymph nodes in the area and they frequently get Neuroblastoma in them. We will have to wait for the biopsy results to see if they have active or inactive (killed) Neuroblastoma in them. Either way...they are not inside my baby anymore! The surgeon said that he lifted up Nate's aorta, vena cava, kidney and portal vein and looked all around...no Neuroblastoma! Crazy...and awesome!
Nate will have round 6 and then will have a full work up of scans and bone marrow biopsy. We are trying not to count our chickens before they are hatched...but we BELIEVE that Nate will be considered NED (no evidence of disease) at this time. Amazing! He will still have to complete his full course of treatment to make sure that every last Neuroblastoma cell is destroyed, but we love being ahead of the game.
Thank you to everyone for your thoughts, prayers and kind words today as we sent our baby into surgery. I know God heard our prayers and Chris and I (and the rest of our family) really appreciated all the support. It helped carry us through another rough day...with relatively few tears. I will keep everyone updated on Nate's progress over the next few days as he recovers. We love you all!
TEARS OF JOY FLOWING HERE!!! Praise GOD!!! Rest as peacefully as possible tonight Dinoffria family!! XOXOXOX
ReplyDeletekristin
Love reading great news like this! Go Nate!!!!! (:
ReplyDeleteVery happy for all of you . Nice work Nate... You really are super !!
ReplyDeleteLots of good thoughts from Anne Schneiders Mom
Thinking of your family. You have a true hero there. I have one too who was in Nate's same position not long ago. They are truly invincible and so inspirational.
ReplyDeleteJodi (Mom of 4yr old Collin)
Someone is listening to our prayers!! Crying tears of joy here in NJ. Been thinking about Nate all day, I am so overjoyed to read this!! I hope you all get a good night's rest and that Nate sleeps comfortably. BIG HUGS!!!
ReplyDeleteWonderful news! Best wishes for a speedy recovery and a safe trip back home. What a great birthday Nate will have this month... not just celebrating another year, but truly celebrating LIFE!
ReplyDeleteSo happy to hear this! Yeah Super Nate! Way to go. I knew you would come out ahead of this awful disease. I am crying tears of joy for you Mom and Dad and your beautiful little boy. Hope his recovery goes as well as the procedure did.
ReplyDeleteLove love love love it!!!! He looks amazing! So happy it went so well. Love you all! <3
ReplyDeleteWay to go super Nate. Fight on and praying for a speedy recovery lil man.
ReplyDeleteGlenda
Congratulations on a successful surgery from one of the most gracious and patient doctors I know. Hope you get some rest in the POO. Thinking of you and lots of prayers for a smooth recovery.
ReplyDeleteLove
Chrisie
Cb: avaholder
Amazing news! So happy for you all!
ReplyDeleteTry and get some rest tonight mama as I'm sure Nate will be a real firecracker tomorrow.
Nate you truly are a SUPERHERO. You amaze me little guy. Happy tears as I truly am so happy for you and your family. Lots of love and continued prayers.
ReplyDeleteHi Nater, You look so good on skype! What a brave, wonderful super hero, you turned out to be. Gramma loves you so much and wants you to get well so I can have you in my arms and feed you too much Pez. Love to you all, Mom and Dad don't forget to hug each other, you are the best super hero parents ever.
ReplyDeleteHi Beth,
ReplyDeleteWe have never met, but I have been following your blog for months and have your baby boy on mind and prayers each day. I got the message I pasted below in a email forward today and it is so perfect for today. I am soooo relieved and happy to hear Nate came out strong as usual! I hope this story gives you comfort as it did for me....
"The Whale... If you read a front page story from the San Francisco Chronicle, you would have read about a female humpback whale who had become entangled in a spider web of crab traps and lines. She was weighted down by hundreds of pounds of traps that caused her to struggle to stay afloat. She also had hundreds of yards of line rope wrapped around her body, her tail, her torso, a line tugging in her mouth.
A fisherman spotted her just east of the Farallon Islands (outside the Golden Gate ) and radioed an environmental group for help. Within a few hours, the rescue team arrived and determined that she was so bad off, the only way to save her was to dive in and untangle her. They worked for hours with curved knives and eventually freed her. When she was free, the divers say she swam in what seemed like joyous circles. She then came back to each and every diver, one at a time, and nudged them, pushed them gently around as she was thanking them. Some said it was the most incredibly beautiful experience of their lives. The guy who cut the rope out of her mouth said her eyes were following him the whole time, and he will never be the same.
May you, and all those you love, be so blessed and fortunate to be surrounded by people who will help you get untangled from the things that are binding you. And, may you always know the joy of giving and receiving gratitude."
Nate, you have a team of angels, friends, family, and strangers that are cutting those ropes for you buddy! It may take a little longer but WE WILL SET YOU FREE little man!
-Angie
Sending love from a stranger!
And we love you!
ReplyDeleteMary W.
Beth & Chris - I have been keeping up with you guys through Lulu and Papa - I am so ecstatic for this great news today - thinking of you guys constantly - you are all in my thoughts and prayers! Sending lots fo love your way! Love, Donna & Ray M.
ReplyDeleteWow! What a champ Nate is! You all will continue to be in our prayers. Blessings, Phil Toole
ReplyDeleteThis is wonderful news! We're rooting and praying for all of you. So happy that Nate and Softie were reunited! I also loved the story Angie relayed about the whale. Wow! We will continue to pray for a speedy recovery so you all can put this behind you. Love and prayers from the Gerardos :)
ReplyDeleteYou are absolutely in my thoughts and prayers! He is such a beautiful boy! I believe in SuperNate!
ReplyDeletehugs!
Sara
Our prayers were answered!!!! All of you have
ReplyDeletebeen in my thoughts & prayers every single day
since July - all of you are a true inspiration!
Please give Nate a big hug & of course a big
hug to both of you! Stay strong & hoping for a
super speedy recovery. Sending blessings &
hugs your way. Love you, Dave & Mary P.