Prayers/Thoughts Request -- My Nephew

[Honolulu_Blue]

I have never really started one of these things before, but I can use all the help I can get at the moment.

My 4 year old nephew has inoperable brain cancer.

He woke up early on the Monday right after Thanksgiving and was very disoriented. He had a hard time finishing his sentences and was drowsy and then threw up a little. My brother and his wife took him to the hospital. The pressure in his head was very high, so they had to perform surgery to drain fluid from his brain to relieve the pressure. They also performed a MRI and found a mass/tumor at the base of his brain stem, where the brain and spinal cord meet.

Given the location of the tumor, surgery isn't an option.

They have performed a biopsy, but, to date, the pathology has been inconclusive. Not even the specialist at the May Clinic could make a determination. Whatever it is, however, isn't good. It's cancer, they just don't know exactly what kind, which makes it more difficult to treat.

While in Detroit, he had a shunt put to help relieve the pressure in his head. The tumor was effectively acting like a dam, preventing the fluid in the brain from draining properly. The shunt will create a hole in the damn and there will be an internal tube that allows the fluid to flow through the body down to the stomach or some other area and be re-absorbed.

After that procedure, however, he was getting very sick. He had horrible migraine type symptoms, a low heart rate, and couldn't eat anything. He was always throwing up. They performed some more scans and found that there was some liquid on part of his brain that could be causing this. It was either that, or the tumor was growing aggressively and pressing on parts of the brain stem, which was causing these symptoms.

Last Friday night, my brother and his wife decided to take him to St. Jude's hospital in Memphis, Tennessee. Apparently, it has one of the best pediatric oncology places in the world. If anyone can fix him and get that thing out of him, they can. So, my sister-in-law and Julian flew down there Friday night and me and my brother drove down there Saturday morning/afternoon.

They performed another surgery yesterday to add another shunt to help take care of the excess liquid in his head. They had to do this in order to get him stabilized - heart rate up and able to eat - before they start treating the tumor.

The surgery went well and they are hoping to start radiation this afternoon.

No outcome is certain here. The road will be long and difficult and, to date, we really haven't gotten breaks.

It's unclear how long they will stay down in Memphis. At some point, we have to get their 2 year old daughter down there to them. She's currenty staying with my parents.

My brother and his wife are holding up as well as can expected. The little guy, Julian, still has a lot of fight left in him. He's already been through so much more in these last few weeks, than I have in my entire life.

From my perspective, I keep thinking about lines from two movies, because that's the kind of stuff that pops into my head.

The first, is the Buffalo Bill line from Silence of The Lambs, "You don't even know what pain is!" I didn't. I do now.

The other is "Do you hear that Fezzik? That is the sound of ultimate suffering. My heart made that sound when the six-fingered man killed my father. The Man in Black makes it now." I am pretty sure I made that sound when I heard the news about what it was.

Since the first week, which was just a blur, I have been doing my best to stay strong and positive. It's a minute-to-minute struggle and not an easy one. When it comes, I just accept it, deal with it, and then let is pass and move on.

He's a great little kid. Sweet, kind, personable. He loves Star Wars, super heroes, knights, dragons, all that good geeky stuff, just like his dad, uncle and so many of us here.

So, please keep Julian and my family in your thoughts and prayers. We're gonna need everything we can get.

Thanks,

H_B

P.S. Fuck cancer.

[DaddyTorgo]

OMG...seriously???

Holy Fuck. That's...I...I don't even know what to say. Thoughts and prayers are with you.

[markprior22]

Wow...this is one of the most horrible things I've ever heard. Will definitely be thinking of him. Is there anything he could be sent that he might enjoy in the meantime?

[thealmighty]

Originally Posted by Honolulu_Blue

So, please keep Julian and my family in your thoughts and prayers.

Done.

[Oilers9911]

That's horrible. I have a 6 year old and I cannot even fucking imagine...

Prayers are sent to little Julian, his family and to you as well.

[Sun Tzu]

That sounds like a nightmare...I can't even imagine. My thoughts are certainly with you and yours. Hopefully this specialist place can help him...

...or at the very least do a quote from another movie..."ease his pain."

[FrogMan]

Originally Posted by Oilers9911

That's horrible. I have a 6 year old and I cannot even fucking imagine...

Prayers are sent to little Julian, his family and to you as well.

same here, I am welling up right now. I have a 6 and a 14 yo and am thankful every day that they are healthy boys.

Little Julian will remain in my thoughts, as do you and your family.

FM

[I. J. Reilly]

I'm so sorry; my thoughts are with Julian and all of your family.

[Passacaglia]

That must be so hard. Best of luck.

[Lathum]

I can't fathom my son or nephews going through that. Prayers to your family and Julian.

[cuervo72]

Fight hard, young man. Fight hard.

[JonInMiddleGA]

Originally Posted by thealmighty

Done.

+1

[Logan]

So sorry and wishing you all of the best.

My girlfriend works as the family liasion for a non-profit in NJ that deals specifically with families of children who have recently been diagnosed with cancer, so unfortunately I've heard a lot about this recently too. I would imagine that the hospital down in Tennessee, or your local hospital, has a similar charity working with it that could provide a great deal of assistance to your brother's family as they're going through this tough time. They could even provide your parents help with your niece or assist in getting everyone reunited, both logistically and financially. If you (or someone close to the family) has a chance to look into it for you, I think you would get a lot of benefit out of working with a similar group and hopefully there is one available.

Best wishes.

[kingfc22]

I'm so sorry. That's just awful and even worse that it's all happening around the holiday's when most kids are most happy.

I'll keep him in my prayers.

[Chief Rum]

Damn, H_B, so sorry to see this. My thoughts will be on your nephew and you and your family. Cancer is horrible at any age; to have it so young is just tragic.

The St. Jude's hospitals, from what I understand, is a terrific hospital for pediatric oncology, and they have generally done good with my Mom as well, who spent most of the past month in the St. Jude's in Fullerton, CA. I know St. Jude's specializes in this sort of thing; if you go to the movies, you'll often see their ads before the movie, with star actors in their ads.

Get well soon, Julian.

And FUCK CANCER.

[molson]

Let us know if there's anything we can do to help.

[MacroGuru]

Prayers will be said...My sons are 10 and 5...this hit home...

St. Judes is an amazing hospital and one of the best out there, your family is in some of the best hands it can be in.

[tyketime]

I am also so very sorry. I hate to hear shit like this. My thoughts & prayers go out to your nephew and the entire family. May the spirit of the holidays help him with his recovery.

[Draft Dodger]

thoughts and prayers are going out to Julian. and to you to, my friend.

[RomaGoth]

Damn HB, hearing this breaks my heart. I cannot even begin to imagine how hard this is for your brother/sister in law. I pray every day for my own children's health and well-being, I will now be adding Julian to my prayers as well.

P.S. - I also say fuck cancer. It killed my grandfather at the young age of 69 (on my b-day no less), and has taken several of my aunts/uncles. It is a destroyer of lives and all that is right with the world.

[CleBrownsfan]

Thoughts are with you and your family... can't imagine what everyone involved is feeling

[ISiddiqui]

I will pray for Julian and your family. May God be with you in this tough time.

[Honolulu Blue]

Originally Posted by Honolulu_Blue

I have never really started one of these things before, but I can use all the help I can get at the moment.

HB #2 here.

You know, you start such threads about as often as I comment on them (I hardly ever read them). But this one's a doozy. You've got my thoughts and prayers, as much as I can spare.

Originally Posted by Honolulu_Blue

P.S. Fuck cancer.

Yeah.

[Sweed]

So sorry to hear this. Julian will be in my prayers.

[Eaglesfan27]

Tearing up here. So sorry to hear this. Julian and your family will be in my prayers.

[Swaggs]

Hoping for the best for your nephew and family.

[Mac Howard]

I have a great sympathy - my father suffered a malignant brain tumour - but the idea that this should come to a 4 year old leaves me completely lacking for meaningful words. I can only offer a helpless empathy and hope against hope that modern treatment can succeed in treating the poor kid's suffering.

[CraigSca]

Special prayer will be said tonight for your nephew and prayers for strength for your family.

[PurdueBrad]

He has our prayers, love, and good thoughts.

[Senator]

I just tucked my 4 year old into bed, and sat down to catch up on my reading.

I think I will go hug him once more.

Prayers to your family. Unimaginable what you are dealing with. I too, have heard great things about St. Jude in Memphis.

[MizzouRah]

That's horrible.. thoughts and prayers!!!

[Warhammer]

If I can be of any help down here, let me know, I would be glad to help.

[PackerFanatic]

Wow...really hoping for the best, HB. You and your family and especially little Julian will be in my prayers.

[M GO BLUE!!!]

God Bless.

(Tell him you got Jedi all over the galaxy sending The Force his way.)

[Honolulu_Blue]

Thanks for the kind words, thoughts, and prayers, fellas.

Means a lot.

Based on the most recent scans, the doctors now believe that the tumor is more aggressive than they originally thought.

He's going to go through a very intense set of radiation therapy treatments. They started yesterday and will do another today and tomorrow before taking a break for the holiday weekend.

These next three days are critical, since it will determine how the tumor responds to the treatments.

This really fucking sucks.

[samifan24]

Thoughts and prayers for little Julian and all of you supporting him!

[Neon_Chaos]

HB, my heart goes out to you. Nothing can compare to the pain of watching a loved one suffer.

Thoughts and prayers to you.

I assume that the doctors have confirmed that the tumor is malignant, and that it is indeed cancer?

[chesapeake]

I'm very sorry to hear this, HB. Best wishes to Julian and your family.

[Honolulu_Blue]

Originally Posted by Neon_Chaos

I assume that the doctors have confirmed that the tumor is malignant, and that it is indeed cancer?

Yes. They aren't sure exactly what kind of tumor it is, but they do know it's malignant and rather agressive.

[spleen1015]

Good luck to you and your family, HB.

I can't imagine having to go through something like this. My thoughts are with you guys.

[Neon_Chaos]

Originally Posted by Honolulu_Blue

Yes. They aren't sure exactly what kind of tumor it is, but they do know it's malignant and rather agressive.

I'm so sorry, HB.

What is important is that you be there for your family.

Good luck to you and your loved ones. Thoughts and prayers all around.

[oykib]

Your family is in my prayers, as well.

[digamma]

Originally Posted by cuervo72

Fight hard, young man. Fight hard.

Indeed.

[MIJB#19]

Horrible news ans story, H_B. Best wishes to you and your family.

[BYU 14]

So very sorry to hear this HB, words can't even begin to provide the strength and comfort needed in these situations. My thoughts and prayers for Julian and your entire family.

Keep fighting Julian!!

[flounder]

I can't even imagine what that would be like. Our thoughts and prayers are with you.

[boberot]

Simply heartbreaking.
You and yours will be in my prayers.

[Honolulu_Blue]

This is an update from my sister-in-law:

Facing such an unimaginable ordeal, a chaplain here at St. Jude said it best: Most of the emotions here defy words. But one thing can be said with certainty; the gravity of this situation has given us perspective most people will never come close to realizing in the course of a lifetime.

The atomic bomb, as I now call it, went off the Monday morning after Thanksgiving. So the entire holiday season of shopping, eating, drinking, celebrating and Fa-La-La-La-La-ing has been replaced by hospitals, worry, monitors, scans and cancer education.

However, despite this new, warped, twisted reality, we feel thankful and blessed to have realized the essence of the season while witnessing the quiet reveal of life's most valuable gifts sprinkled throughout.
Brad helped me fight the urge to feel sorry for ourselves this weekend. I struggled with the idea of "celebrating" -- being down here far from our daughter, far from our friends and families, so very far from what this holiday would've been had a tumor never entered our lives. But the instinct to stay sane, hopeful and optimistic took over - and somehow, we were able to rise above it.

Again, it's about perspective. Last Saturday, we lived hour to hour praying Julian's heart rate would climb to a stable pace, hoped a dangerous surgery would be avoided, and wished with every cell in our bodies that we could get him well enough to even make it to St. Jude in time to get a tailored treatment plan up and running. Each of those prayers were answered. In just the last week, Julian's recovered from another surgery (his fifth), started radiation to start shrinking the tumor, graduated from Intensive Care to Peds to Out-Patient status, and we were even able to move out of the hospital into a hotel-like suite on St. Jude's campus in time for Christmas. Here we have our own tiny Christmas tree, old-blue-eyes crooning classic Christmas songs, and "A Christmas Story" on the tube.

Julian had a great morning. His eyes lit up when he saw the half-eaten cookie Santa left on the table next to more than a dozen presents. He happily and eagerly unwrapped puzzles, action figures, cars, movies, books, games, treats and more.

Brad and I didn't open anything wrapped in paper today. But we were given different kinds of gifts -- actually some of the best life has to offer. This holiday, we received rays of hope, an overwhelming swell of love and support from loved ones and strangers alike, an army of prayer warriors lifting our case to the heavens, and most importantly, more time with Julian. Time to talk with him, time to laugh with him, and more time to put our arms around him.

A girlfriend texted me today that when the kids at her Christmas mass said, "Christ our King was born this night and the earth was filled with hope and light," she felt it was a sign for us.

We want to thank all of you for your part in filling our world with hope and light this holiday. Here's wishing you're having yourselves a Merry Little Christmas too.

[MacroGuru]

Ah damn...I just started crying...

My prayers are still there for your family...

[Suburban Rhythm]

I've probably opened this thread 4 or 5 times now, and couldn't think of anything truly meaningful to write.

But I am glad I opened it again.

We are all thinking about you and your family HB...it's the season of miracles, and I think we can all agree if someone deserves one, it's Julian.