Prayers/Thoughts Request -- My Nephew

[Lathum]

An amazing show of strength.

[FrogMan]

Read this post through the email notification I got and was reading along fine until I got to this part

Originally Posted by Honolulu_Blue

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.

There, I lost it man, lost it, started crying. Dried my eyes and left the computer and went and hugged my two sons who were playing with the Wii. Stayed with them some time, not watching the game on screen but watching them, thanking God that I had two so healthy kids and thinking about your nephew.

He, you, your family are all still in my thoughts. Hang in there my friend.

FM

[Mizzou B-ball fan]

Have had a similar holiday season experience in the past. When something like that happens around Christmas, it seems to help the concerned people divert their attention from the issues at hand, which is best.

As far as your nephew, there's nothing he wants more than to just be normal. Having the cookie with presents was the absolute best thing you all could do for him. Keep the focus on making his life 'normal' and he'll do very well. Best wishes.

[BYU 14]

Originally Posted by FrogMan

Read this post through the email notification I got and was reading along fine until I got to this part

There, I lost it man, lost it, started crying. Dried my eyes and left the computer and went and hugged my two sons who were playing with the Wii. Stayed with them some time, not watching the game on screen but watching them, thanking God that I had two so healthy kids and thinking about your nephew.

He, you, your family are all still in my thoughts. Hang in there my friend.

FM

Add me to the list that couldn't hold back tears on this part. Thank you for sharing HB and we will keep praying for Julian!

[Honolulu_Blue]

Apprently there is a reason I have never really started one of these things before... I am not very good at it.

So, I've decided to leave most of the updating to the professionals, aka Julian's mom and my amazing sister-in-law. So, here's the latest on this front:


-----------------------------------

"Never tell me the odds!"

Brad has repeated Han Solo's quote from The Empire Strikes Back several times since discovering Julian's brain tumor. And I've found it to be good advice.

I know there are a lot of questions about Julian's diagnosis, treatment plan and outlook. From my background in PR, I feel a responsibility to provide the facts so that assumptions and misinformation will be avoided. But as parents, Brad and I needed time to process, digest and come to terms with how to think about and talk about what we're facing.

I have to admit that I feared that disclosing the diagnosis here would lose prayers if even one person thought this battle was going to be too tough to win. But then, by the grace of God, it occurred to me that it was the other way around. By letting you in -- and allowing the hundreds, maybe thousands, of people who care about Julian understand the road ahead -- it would only embolden our campaign for a miracle.

So, Team, here's what we face together. Julian's been diagnosed with an atypical high-grade brain stem glioma. Let me caution you before doing your own research on the internet that your search will most likely turn up information about diffuse intrinsic pontine gliomas. Dr. Amar Gajjar, who's overseeing Julian's care at St. Jude, tells us that while Julian's tumor is very serious, it is not a text-book pontine glioma. It is in fact growing atypically, and we are holding out hope that this key differentiator - combined with a unique and progressive treatment plan - will produce atypical results, ie. We win!

During our weekly meeting with Dr. Pai, our radiation-oncologist, we talked about Julian's tremendous progress in such a short time that we've been here. When reviewing Julian's symptoms and noting that they've all but disappeared, Dr. Pai said, "His progress has exceeded my expectations." That's the kind of thing we like to hear - and we believe the kind of progress Julian will only continue.

Brad and I are realists. We fully understand the mountain we face.
But here's the thing. Anyone who's met Julian - or even heard stories about him - I think would agree that he has always been an exceptional kind of kid. And now, facing an exceptional kind of tumor, the only outlook we have is one with exceptional results.

Dr. Gajjar's described his own goals like this: 1) Cure Julian, 2) Give him the best quality of life possible, and 3) Never hurt Julian. We're wrapping up Phase 1 - the radiation therapy treatments - tomorrow, and making plans to fly home Wednesday for a three-week break at home. We'll then return to St. Jude in early-February for scans and his first course of chemo, a cocktail hopefully mild enough for Julian to handle every two weeks for the next two years in an effort to stave off recurrence. St. Jude will continue to oversee all of Julian's care and keep all decision-making power, but the ongoing chemo treatments will be administered by Mott's Children's Hospital at the University of Michigan so we can be close to home to lead as normal a life as possible. We will most likely travel back to St. Jude every three months for scans.

Dr. Gajjar emphasized the importance of staying positive and hopeful and told us stories of phenomenal families who have defied the odds because of this. He's encouraged us to "put nothing off," and to enjoy every day we have with him. And that's exactly what we intend to do.

I will leave you with this. Me and God, we've been having some good chats lately. I've discovered some prayers that have helped me find strength and somehow even peace amidst all of this. I was surprised to find that my fumbling and sometimes awkward prayers have become more articulate, and they have even helped alleviate a bit of the worry and fear that has clenched my chest, my stomach and my mind over these last several weeks. I've had this sense that some of these prayers had a way of finding me instead of the other way around. And then it happened again last night, when my sister Gina introduced me to a prayer by St. Julian of Norwich. And it goes:

…All shall be well, and all shall be well, and all manner of things shall be well"

Can I get an Amen!

So, once again, please accept our greatest gratitude a thousand times over for your continued care, concern and most importantly your prayers for Julian's well-being. I cannot place value on how much this means to me and Brad, our family and our effort to heal our little man. We've done some hard work and fought a good fight so far, but we've got a long way to go. We hope that you'll continue to march down this long and winding road with us toward the ultimate hard-won victory. Go Team!

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I consider you fellas (gals) as sort of my secret reserves in all of this. So, please keep at it.

I saw him over the New Years eve when my wife and I flew down with their 2 year old daughter. He had really come an incredibly long way since the last time I saw him two weeks prior. We went to "TGIFridays" for dinner, because he wanted noodles and a chocolate shake and had a movie night (watched "Despicable Me"). All in all, a pretty decent New Years Eve. I guess he's just been getting stronger and stronger each day, which is fantastic.


We're hoping to do a little auxillary Christmas some time this weekend, since Julian was in Memphis for Christmas proper.

I can't wait to give him the Christmas presents I bought him:

ThinkGeek :: Deluxe Jedi Robe

Amazon.com: Master Replicas Yoda Force FX Lightsaber: Toys & Games

[Lathum]

It all sounds positive, heres to continued success!

[JonInMiddleGA]

Thanks for the update, love the news.

[Suburban Rhythm]

Two thumbs up. And wishing I had more thumbs.