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Old 12-02-2011, 05:30 AM
huan
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Default prayer request for super nate dinoffria

I don't know this little guy personally, but my wife is friends with a family member of his. He's going in for surgery tomorrow. Please pray for Nate and his family.

This is from his mom today (source):
Quote:
Thursday, December 1, 2011
Surgery in the morning!
I really want to write a post explaining everything we learned at the meetings with the doctors on Wednesday, but I need to get some sleep. The hospital called at 4:30 this afternoon and asked if we could move Nate's surgery up to tomorrow morning, instead of Monday. So, we have to be at the hospital at 6:30am for pre-op preperations and he is scheduled to be in the OR at 9:30am New York time...7:30am Arizona time. I cried...a lot...when they called and asked us to change his surgery. This is better, for many reasons, which is why we are doing it, but it is still hard. I wasn't quite ready, mentally or emotionally, to be putting my baby boy through this tomorrow. So, please send prayers and good vibes to my sweet, super boy and to the surgeon and doctors. I will try to write a more informative post tomorrow as we wait for Nate to come out of surgery. It will be a long surgery, 5 to 10 hours probably...or as the surgeon tells all of his patients, "as long as it takes to do a good job".
some back story on this little warrior:
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On July 7th, 2011 Nate was goofing around with his brother and slammed his belly into our ottoman. He immediatley started complaining of pain and then began throwing up. We took him to the ER where they found that a large mass in his abdomen had ruptured. At that moment, our life changed forever.

Nate is a sweet, smart, happy 2 year old boy with a red headed temper and Stage 3 High Risk Neuroblastoma. We have a long, hard couple of years ahead of us as we get Nate through the difficult treatments ahead. We are confident that we will make it through these treatments with the love and support of our friends, family and God; and Nate will grow into a very special man with much to offer the world.
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Old 12-02-2011, 06:02 AM
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Play The Man Play The Man is offline
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I said a prayer for a successful operation and comfort for the family. May God bless Nate.
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Old 12-02-2011, 06:36 AM
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Will do, huan. Poor little guy.
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Old 12-02-2011, 07:59 AM
Bonnie Bonnie is offline
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Originally Posted by Play The Man View Post
I said a prayer for a successful operation and comfort for the family. May God bless Nate.
Yes, may God bless Nate and the family. They'll be in my prayers.
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Old 12-02-2011, 07:11 PM
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I will keep praying for this family until we hear all is good. We had a very similiar freak accident with my son (he broke his skull) but luckily surgery wasn't required but i know the heart wrenching waiting that comes with not knowing if your baby is going to live or not. My stomach knots up just thinking about it again. I'm sitting her now listening to my son playing with his trucks and I know miracles do exist. Please let us know as you hear how he's doing.
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Old 12-02-2011, 08:06 PM
huan
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Thanks all for praying for Nate & family. Here is the update from his mom, sounds like surgery is going well so far, please keep them in your prayers:

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Nate was taken back for surgery at 11:30am. He was not able to have anything to eat or drink from midnight last night on...so, none of us had breakfast this morning. Needless to say, we were all getting a little cranky as the time was wearing on. We just got our first update at 2pm and they said that Nate is doing well. The resection is under way and the doctor got started at 12:35pm.

On Wednesday, we had our meeting with the surgeon and one of the doctors from the Neuroblastoma team here at MSKCC. Nate was being a crazy goof while we met with both doctors, but we wouldn't want it any other way. They surgeon sat down and looked at Nate's CT scans and reviewed his history with us. He said on a 1-10 scale of difficulty for the Neuroblastoma that he sees here (he sees some of the most challenging cases in the country), Nate is about a 2. He said he gave it this difficulty rating only because he has to shave off part of Nate's liver and there is a risk of bleeding. He also talked about making sure there is no part of his adrenal gland (where the tumor originated) left. If there is, he will remove it. The surgeon also said that he will look at all of Nate's lymph nodes in the area and if any of them look diseased (apparently, they look different), he will remove those also.

We were given the low down on what to expect after surgery. Most of which we already knew, because Nate has been through this once before. Basically, he may come out of the OR on a breathing tube and ventilator. If this is the case he will have to go the the PICU (pediatric ICU), which is across the street at New York Presbyterian Hospital. If he is able to come out of the OR breathing on his own (which he was, after his first surgery), he will stay here at MSKCC. We are REALLY hoping and praying for him to come off the ventilator in the OR. It's very normal and expected if he still needs the breathing tube, but I am not looking forward to seeing my baby sedated on a breathing machine. Nate is our champ and we think he can do it! He will have a chest tube to drain fluids, another (temporary) central line and an arterial line (which he pulled out the last time!). We really don't know how soon Nate will get to come home. It all depends on him and his ability to heal. He did really well last time, so we are hoping for the best. Most likely it will be anywhere from 5 to 10 days (we were told 7 to 10 by the surgeon, but have been told as short as 5 by the oncologists). We just have to wait and see.

Chris and I both came out of the meeting with the surgeon with the impression that he didn't understand why we were here...why we had traveled across the country to have this "2 difficulty" tumor removed. Strangely, this makes me feel good. We know exactly why we are here. We are here because Nate is our son and we would do anything for him. Nate was lucky enough to have most of this tumor removed already in Phoenix, but the key word is MOST. We want to make sure that ALL of the tumor is removed this time and who better to do that than the best Neuroblastoma surgeon in the nation (maybe the world). No one in Phoenix ever said anything about Nate's lymph nodes. The surgeon here is very thorough and that is what Nate needs. Studies have shown that surgically removing the tumor, all of the tumor, is an important component to curing Neuroblastoma patients. We have worked hard and are fortunate enough, with the help of so many awesome people and great organizations, to be able to bring Nate here...that is why we are here.

One other bit of information we got from the surgeon, was about the "spillage" that Nate experienced when his tumor ruptured as he jumped on our ottoman. I off-handedly mentioned this to the surgeon as we were talking about Nate's history and he said that they have found in Neuroblastoma that "spillage" does not matter. In some tumors, it is an issue, but not in Neuroblastoma. This was awesome news to me. Not that it makes a ton of difference, but when they kept talking about spillage at the beginning, my mom brain was running wild with mind pictures of nasty little cancer cells running wild on his insides. I kept wishing we could have some how found this tumor, fairly early like we did, without the rupture. All coulda, shoulda, woulda...but still puts my mind at ease a bit, and I'll take all I can get at this point.

We then met with one of the oncologists on the Neuroblastoma team to discuss Nate's 6th round of chemo and the antibody therapy they do here, versus the one they do at PCH. It is still up in the air as to if Nate will receive his 6th round of chemo here in NY or at home. It will all depend on how long it takes him to recover from surgery. We will make the decision as the days go on. If he is able to come home quickly, he will do the 6th round at home. If his recovery here in NY is extended, he will probably receive the 6th round here. Chris and I will make the decision in the next few days. I drilled the oncologist pretty good about the antibody treatment and we got all of our questions answered. I will explain more about it, once we have made some decisions as it gets closer. It was just nice to talk to a doctor here, face to face, and get the information we need to make decisions for Nate's care. We will drill the oncologists in Phoenix and make some decisions...we know which way we are leaning right now, so that feels good.

I'm typing this as we wait for Nate to get out of surgery. We went to lunch with some great friends and have had some good distractions. Chris is mastering Angry Birds. I think I'm going to make a game called Angry Moms (and Dads), where we can launch bombs at cancer...in real life. Well, I guess that's what we are all doing every day. Surgery, chemo, radiation, etc. These are the only bombs we have right now. I just wish our babies weren't standing in the way.
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Old 12-02-2011, 09:47 PM
Bonnie Bonnie is offline
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Thanks for the update, Huan. My heart goes out to her and her husband and little Nate for all he's been through and is still going through. I will continue to pray for him and complete success getting rid of this cancer.

It's one thing to be an adult and go through surgeries and chemo, but to see the little ones going through these things, especially when it's your own child...

God Bless them!
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Old 12-02-2011, 11:29 PM
huan
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Default Success!

good update from mom:



Quote:
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!
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Old 12-03-2011, 01:37 PM
Bonnie Bonnie is offline
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Wonderful news!
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