Tuesday, October 21, 2008

Life is Fragile


We returned home late last evening after Henry's MRI at Hopkins. We got all the kids down and the phone rang with the call that would confirm our worst fears. The cancer which Henry has fought over the past year has begun to return over his brain.

We've known the odds since last October, only one in four make it out of this. Henry's response to the treatment and his recovery afterward has been astounding, leaving us hopeful. But aggressive cancers get aggressive treatments, meaning that not much, if anything, has been left on the table to try. We meet with our oncologist tomorrow to discuss what our options are. Whatever they are, we know we want Henry to be as comfortable and happy as possible.

For those of you who interact with our children, please speak gently. Tara and I will be discussing this with them today. Their actions and words will need to be listened to with great understanding. We ask that you provide them that.

As for Henry, he is feeling good right now. We have many questions which we hope to have answered tomorrow. For now, we begin to take one step at a time down a path which we hoped to avoid. Not having that option now, we will be deliberate and focused on each day, each step.

34 comments:

Granya and DeeDad said...

The outpouring of love and support abounds already this morning.

This same love and support helped sustain this family this past year, now we embark again but without the hope and energy.

Our strength and love will go to the Scheck family and will help provide whatever you need - always knowing that no one can give you what you want.

Anonymous said...

We love all of you. Nothing seems right to say at this time.
You are in our thoughts and prayers. I wish we could take some of your pain away.

the krause house

Anonymous said...

I have asked many of my friends and family to put you all back on that prayer list they had you all on this past year! We love you and please know we think of you all
with much love!

Cousin Susan H.

Anonymous said...

We love each you tremendously and will be there for you.

The Amos Crew

Anonymous said...

Our hearts ache for you - you are in our thoughts and prayers as we hope for that miracle out there. Whatever we can do from afar..
Hugs
Linda and Val

Anonymous said...

We love you all and are thinking about you. In these dark days, I hope and pray that you find moments of joy in the love and strength that your family posesses in such abundance. And if you run out of strength, remember that there are countless people who will hold you up.
Peace,
Karen

Mac Girlie said...

Thinking of you and sending good and positive thoughts your way. I am constantly inspired by your strength and love. You will get through this and Henry is a remarkable boy. I'm sure he's up to whatever challenges he will need to face.

Susan

Anonymous said...

I am so sorry. All of you are in my thoughts and prayers.

Love, Nancy S.

Anonymous said...

We're continuing to pray for Henry and your whole family here in Wichita... Hugs.

Anonymous said...

My heart aches for all of you. Please know that I'll be here for you always! I'm so sorry this is happening. Thinking of you.

Love,
Shanda

Steph said...

This hurts my heart to read this morning. I can only try to imagine how you are all feeling.


I'm sorry.

Always thinking of you and Henry.

Anonymous said...

Much love, prayers and support from your Eastern Shore friends - We are all with you praying.... and loving you

The Fiddlers, Berthiaumes and Palmers

rlbates said...

I don't know what to say. Please, know that if there is anything I can do for you, I'll do my best. You remain in my thoughts and prayers.

Erin said...

You are in my heart and prayers. I will pray for you all and for the best for Henry.

Erin Pryor Gollogly

ms.t said...

Oh Tara and Bryan, I am so sorry. I just can't imagine what you two are going through. Its so not fair. Stay strong in faith and love in one another. I am only a moment away to come over and help. All our love and prayers are with your family right now.

teresa

Anonymous said...

So very heartbroken to hear this news today... cannot believe it. I wish I could rewind the day yesterday & make the news be the exact opposite.

We love Henry & all of you so much. I will continue to believe in the power of prayer & know that love does conquer all.

xoxoxo The Hartley Hooligans

Michelle said...

I have never met Henry or anyone in his family. I pray for him often because my step- mom-in-law asked me to, and I whole heartedly agreed. I feel very close to Henry through prayer, and whatever happens, I know we will eventually meet! I have not given up hope... Jesus specializes in the impossible!! Praying for all of you here in Vermont!

shadowfax said...

So very sorry to hear it. My heart goes out to you, and I will keep you in my thoughts.

Anonymous said...

I don't know what to say. Our hearts ache for you. Please know that your family and Henry especially is in our thoughts as you travel down this path.

The O'Mara's

Stiff Man said...

I'm so very sorry for what your family, and especially Henry, is going through right now. I can't imagine my son having an illness as serious as what Henry is facing. God bless that little man!

Prayers for him are being said as I type.

Anonymous said...

You have always been so good at expressing your feelings, and here I sit, dumbfounded; not knowing what to say about how I am feeling. Disappointment, Denial, Anger, Hope and Faith...All I can promise is that we will help each other through this - just as we did before. Be strong and know that there is a phenominal amount of love behind you all.

K Barron

Anonymous said...

Bryan and Tara -

Fred and I are thinking of Henry and your family today and everyday. You and yours are in our prayers and thoughts every single day.

Lori & Fred Roberts

Ali said...

I heard about Henry through Shadowfax's blog. Henry sounds like a wonderful and tough little guy. My thoughts are with you and your family.

ArkieRN said...

I've been reading your blog and following Henry's progress for a long time now. I can't even imagine what you and your family are going through right now. I just want you to know that my family and I are praying for you.

May God give you grace and peace and may He hold Henry in the palm of His hand.

Anonymous said...

Our hearts are breaking for your entire family, but most of all for precious Henry. You all have shown such amazing strength and Henry knows how very much he is loved. Words cannot begin to convey how sorry we are. We are here for anything you need - day or night.

Love, Julie, Brad, Patrick, Andrew and Samantha

Kathy said...

I guess I'd have to qualify myself as a lurker. I've subscribed to your feed since I found your site through a google news alert.

I am so terribly sorry to hear that Henry has relapsed.

I don't know what variant of medulloblastoma Henry had, but I know he had disseminated disease at diagnosis and I'm going to guess it might have been anaplastic or giant cell medulloblastoma.

As you consider treatments for relapse, I'd like to make two suggestions. One is that you might be interested in the medulloblastoma/pnet ACOR list. There are some smart people there who know a lot about what's out there.

The other suggestion I'd like to make is a treatment that I would at least look into if my son relapsed, octreotide:
Octreotide in the therapy of recurrent medulloblastomas

There's a trial going on now in Iowa:
Radiolabeled Octreotide in Treating Children With Advanced or Refractory Solid Tumors

You're at Johns Hopkins which is an excellent hospital. I don't know if any of that would apply to Henry's case, so I pray that I'm not overstepping my bounds by passing that information along.

Please feel free to contact me if I can help in any way, my 4-year old niece passed away from a brain tumor in 1996 and my son was diagnosed with PNET in 2003 and pediatric brain tumors have been a huge part of my life.

My cell phone is on my son's site and my email is bkbell at gmail.

I will keep your family in my prayers.

The Hebbs said...

Brian and Tara -

Words cannot express how deeply sorry we were to read about the news you received. We are so hopeful for Henry. He is a beautiful, strong boy. You and your family remain in our daily prayers.

Sareen and Kevin Hebb

NGudenkauf said...

Wanted to let you know that my first graders and I will keep you in our prayers at Mass this morning! My heart hurts for you all!

Love,
Natalie Gudenkauf

Anonymous said...

Bryan and Tara...never lose faith or hope. You are amazing people. We are all praying and thinking of you.

Gregg & Corry Cooper

Anonymous said...

Tara - Your entire family is in my family's thoughts and prayers. I wish the best in this heart breaking situation. Your family and friends will be there for the support that you will so greatly need.

In our thoughts and prayers.

Tanya Farris & family

Anonymous said...

Tara, my heart aches for you and your entire family. I don't know why these things happen but I do know that God never gives us more than we can bear. You are in my thoughts and prayers. May you find comfort and support in your co-workers. We are here for you and Henry.

Andrea

Jessica said...

Came over here from Dr Shadowfax. So sorry to hear about the news. Henry and your entire family will be in my thoughts and prayers.

DGM said...

We were so sorry to know about Henry. Nothing seems like the right thing to write. We are holding all of you close to our hearts and in our thoughts daily.

The Mohr family

Anonymous said...

Tara and Bryan,

I am so sorry to hear that you received such devastating news, and right before your trip to Disney. I will keep your entire family in my prayers every day. I know you have many difficult days ahead...I hope it helps you some to know how many people are praying for all of you.

Kara Skelly