History

Wednesday, July 18, 2007 8:36 PM CDT

“Kristin,” my good friend said to me from across the table today. “You really do need to change your website.” “I know,” I said, knowing what she meant...there's too much sadness on this site “It’s not that we don’t have happy times. We do. We have lots of them. It’s just that I only feel like writing on caringbridge during the hard times.” I explained.

It’s true. Like many others who have long “finished” (like you ever really finish!) the cancer journey, I’ve struggled about this website. I’ve written about those thoughts many times before. Mostly, though, I am only drawn here now during the dark times. This site is not really any longer a place for me to keep friends and families up to date on Brandon’s health. Thank God, he as happy and healthy as any “normal” five year old.

No, this site, I suppose, over time, has become “my” place. It used to be that I was writing to people – all of our friends who really wanted to know what was happening with Brandon’s cancer, what our family was going through. But now, when I do write, I write for myself and not to anyone else.

Brandon’s experience with cancer does not define me – and it does not in ANY WAY define our family. But it had a huge impact on our lives – and me in particular. Our experience opened the door to a world I never knew…a world of suffering and darkness, and also a world of compassion and loving empathy beyond any thing I could have imagined. Not just staying in that world but FOCUSING on that world is a blessing in so many ways. It brings me so much peace. But at times, it is hard. And the grief becomes unbearable. That’s when I seem to find my way back to this site. And since I’m not really writing “to” anyone, I don’t feel the need to share all the “happy times”.

I thought about explaining this to my friend, but I didn’t. I just agreed that I should reassure everyone – whoever that is – that I am NOT always sad and that we do have lots of happy times.

For one, we had a great 4th of July trip to the beach a few weeks ago. The boys – Ryan in particular – is getting pretty in to fishing, and he had the “best vacation ever” because he proudly hooked a 3 foot shark. Actually, all 3 of “the boys” caught a lot of fish, and I think between the fish and the waves, they were all pretty happy. And since their time fishing gave me some time to curl up with some good books, we were ALL happy!

The boys are enjoying their “lazy” summer – at home with a sitter for the first time ever (for the past 8 years, they’ve been with our beloved “Miss Nancy” at her house). They’ve done lots of swimming and too much video game playing and tv watching, but would it really be summer if they didn’t!?

Ryan just celebrated his 9th birthday. I really cannot believe he is already nine – next year into “double digits”. He is such a great kid and had the best birthday since we caved and got him a Wii. Watching Brandon box on that thing is just about the funniest thing I’ve ever seen.

Mike’s doing great – unable to keep up with my ever growing “honey do” lists. But I think he’s loving this age with the boys. They are growing into things Mike loves to do, and that makes for some great father-son times!

Hopefully, there won’t be any “dark times” drawing me back here for a long while. Happy summer, my friends.
Love,
Kristin

Saturday, June 30, 2007 2:16 PM CDT

All of Me - Selah

Holy Father, love me still
I have fallen from Your will
I am broken - hear my humble cry
My cry…

Take my life and make it yours Lord
Fill me with your love
You are all I need
I surrender all of me

I have wandered for so long
Tired and weary on my own
In your arms, I know I'm home
Oh God, my God

Take my life and make it yours Lord
Fill me with your love
You are all I need
I surrender all of me

Take my life and make it yours Lord
Fill me with your love
You are all I need
I surrender all of me

I surrender all of me

I surrender all of me.

Yesterday, Father Frank spoke to a packed house – a sell out crowd, as Mr. Robb put it, at Sam Robb’s funeral. He reminded all of us as we sat there with our broken hearts that everyone has a cross to bear. I listened to him talk about the mystery of suffering, and as his words sunk in, I couldn’t help but think that watching a child suffer at the hands of a relentless disease, and especially losing a child, is a cross that is just too heavy to carry. It is a cross no one should have to bear.

And yet, as Father Frank said, this suffering is a mystery – something that surpasses our earthly understanding. I wiped the tears and wondered why another young man – a young man who lived loving life and who had a whole life time ahead of him – had to die.

Sam Senior and Annamarie delivered a beautiful, powerful Eulogy. I wondered how they had the strength to do that – and how they had the wits about them to speak to the hundereds of young people who were there – most of whom were probably facing death for the first time. Never could I say it so eloquently, but they told us that we all have two choices. The first is to know that everyone hits hard times and to conclude that Sam just got a bum rap in life with his cancer and early death – and then to move on with our lives as they were. The other choice is to realize what Sam knew, and that is that you should never listen to anyone tell you you can’t do something, that you should love life and that you should fight to the last breath. They reminded us that the loss for them, despite their appearance of confidence and strength, is utterly profound, and they urged us all to help support research into cures for the terrible disease that took Sam from our world.

After the service, surrounded by friends, I couldn’t join the conversation. I had no words to say. There was just nothing to say. The shock of Sam’s death has been unreal, and we lost 4 others this week – in one week – in one city – that I know of. There was news of Ben Smith's and AJ Avello’s relapse, and it seems impossible to walk forward in the face of the suffering.

A song keeps running through my head. The lyrics to “All of Me” by Selah are written above. In this difficult time, what can we do but surrender and ask God to take our lives and use them for His work – use them for good…to help others through their mystery of suffering. Sam, your life and death will not be in vain. I hope and pray that you are up there having more fun than you ever did down here on Earth, and I am comforted to know that our little ones – Carter and Hayley and Shelby and Catie and Coulter and Ethan and all the others have you to watch over them. Rest in peace, Sam. Rest in peace.

Love,
Kristin

Saturday, February 3, 2007 2:52 PM CST

There’s a recent moment in time that I think will be stuck in my mind forever. It was the night that Catie passed away. As Julie, Jen and I walked through the hallways of PICU toward Catie’s room, Jenny looked up and saw us approaching. A quiet smile can over her face, and she softly declared, “My girls are here.”

As I’ve struggled to cope over the last few weeks…as we’ve ALL struggled to cope…my thoughts have turned back to that moment so many times. I’ll never know how Jenny was feeling at that moment, but I do know how it feels to be surrounded by “my girls” – those moms and friends who go out of their way to lift me up when my heart is heavy. There have been so many sweet and kind words of encouragement…so many prayers for strength. I feel so blessed to be surrounded by such wonderful friends.

I am thankful for the gentle reminder that it is not ME who is working to make a difference for children with cancer. It is God’s work. I have known that for a very long time, but in the midst of the grief, I let it out of my sight. Returning my focus to that has truly brought relief and peace to my heart.

I am thankful for the gentle reminder to celebrate the victories of all those who beat childhood cancer. The grief for those who succumb to the disease can easily overwhelm the celebrations for the many who survive, but I need to take time to celebrate the victories. Wow - it can be very difficult to manage the mix of intense emotions.

I am thankful for the reminder that stories like Brandon's - stories of victories and survivorship - are important nuggets of hope for families coping with a new diagnosis, and for that reason, it is important to continue to share.

I am thankful for the many, many people who continue to come forward offering to help. I know that you are part of God’s army. You all bring peace to my heart, as I know this mission is ordained by God.

I will continue to struggle – it is impossible not to when my days are spent focused on childhood cancer. But I know that as I struggle, “my girls are here”, and I feel at peace.

Today, please take a moment to thank God for blessing this world with sweet Hayley Thomson, whose life on earth was far too short. She would be 4 today, and I bet she, Shelby and Catie are having the best and pinkest princess birthday party imaginable.

Thanks to all of you. I am so lucky to have you in my life!
Love,
Kristin

Tuesday, January 23, 2007 10:45 PM CST

I have thought often over the last several months about this website. It seems odd to me in so many ways to still come here to write. Caringbridge does not exist so that I can share with the world my kids’ latest triumphs on the soccer field. It does not exist so that I can report on the day in, day out trivialities of our lives. It has felt to me almost inappropriate to continue to write, especially when I know of the life and death battles that are being fought on many battlefields recorded on other Caringbridge sites.

So I have thought about taking down our site. It has often seemed time to move on from Caringbridge. There’s nothing for me to say that I haven’t said before. There’s nothing of interest here. Yet for some reason, I haven’t been able to take the step of taking it down.

I come here now with some glimpse of understanding. When crisis hits “our family” (i.e. the family represented so expansively on Caringbridge and Carepages), this is where I come. It is a place to find details, to share thoughts, fears, prayers…and it is also a place to feel connected.

Over the past weeks, my thoughts have been absolutely consumed with our precious Catie. As there were developments, new infections, breathing difficulties, I’d wake up in the night over and over again thinking of her, Jenny and Tre’. They were my first thought in the morning and my last at night. And I came to Caringbridge dozens of time each day just to feel connected – to Catie and to all of our dear friends who also “live” here. I don’t know why sitting at a computer staring at a screen, reading guestbook entries on Catie’s site from people I know helped me to feel connected to them, but it did. I don’t know why visiting the sites of other families I know, with a deep understanding that they too were consumed with concern for the precious Wilkins’, helped me feel connected to them, but it did, too. And more than anything, I needed the comfort of that connection. It has borne out far too many times – but if there is anything I know for certain, it is that when one of us is in crisis, we are ALL in crisis.

It is that love for each other derived from a deep understanding that brings us together. It is that love for each other that makes this an impossible time. Again. It is impossible. The grief is profound. I’ve been here before. We’ve all been here before. I HATE this grief…the grief that comes when one of our babies goes to heaven. It causes me to stumble, to feel like I am suffocating.

I’ve found comfort in the words and wisdom of others. Jenny and Tre’, with their unfailing faithfulness, are my greatest source of comfort and inspiration. How selfish of me to find comfort in and from them. It is THEIR loss, yet we all feel it. We loved that precious little girl. We love THEM so much. I can’t bear the thought of the hole in their hearts I know will not heal until they are reunited with Catie. Oh, how I long to patch the hole…yet, I can only pray that God will cover it until it can be healed forever.

In the years since we entered the world of childhood cancer, I have searched for answers. WHY must innocent children suffer? WHY?!? I know I cannot understand – was not meant to understand on this side of heaven, but it is so hard to live this over and over again. I am so weary, so tired of this grief.

Selfishly, I share that it was so hard to walk into the office today. I have been here before. Today, I just feel like I cannot bear to meet another of these precious children, I cannot bear to walk this journey with another family, I cannot bear another funeral. It's so hard.

I remain steadfast in my belief that God has called me to be a soldier for these precious children, to fight this disease and try to make a difference. I will remain obedient, but today, I am so scared. I fear failure. I know I can’t save these kids. I am powerless to do that. But I just need to believe I can help them. I need to believe I can make a difference. I am so scared - what if I can't?! And I feel sometimes more exhausted with each day that passes. Am I strong enough to continue to walk in the trenches every day? On days like today, I feel so weak and so tired...I beg Him to lead others to walk with me so that together, we can make a difference because I know there is little I can do alone. I PRAY that He will give me wisdom and that He will lead me where I need to go. I PRAY that He will give strength to all of us, to not be so overcome by the constant grief that seems to be a part of this world that we cannot focus on helping the ones who still need us....it is all so hard.

My favorite Nurse Mindi wrote to me today, sensing as she always does my weakness. “Faith is a funny thing and I guess it is times like these that we must close our eyes and soldier on,” she said. I guess you’re right, Mindi. My eyes are closed, and with a leap of faith, I soldier on.

Jenny and Tre’, I cannot express how much I love you and how much I loved your little girl. I told you that I will never forget her, and I mean it. I will never see a rainbow without thinking of sweet angel Hayley Thomson. And I will never see a butterfly without thinking of your Catiebug.

With love and great sadness,
Kristin

Tuesday, January 23, 2007 10:45 PM CST

Friday, January 19, 2007 2:26 AM CST

THE BIG “WHY?”

Why do little children suffer?
Perhaps of all questions this is the hardest.
The little ones of Vietnam,
Who do not know the meaning of the conflict,
But who know it all too well.
The little ones who have neither bread nor heat
And without blame suffer inside and out.
The little ones who are dreadfully sick
Who cry out in hurt and pain.
The little ones just old enough to know enough
To endure heroically, and to fight back manfully.
For adults who have shared in sin,
And here and there have failed to do
What they should have done,
And who perhaps each one carries within himself
Some reason for blame or punishment –
For them to suffer is to some degree understandable,
But why? Why, God, should wonderful, little
Innocent, helpless children suffer?
Why?
Let one who has stood beside
His own dear child and daily
Watched him endure in his body
Pain and suffering –
Let such a one talk, and
I will try to listen.
But, please, no glib answer from one
Who has not entered a child’s suffering.
Perhaps for me, this is the largest of questions.
Perhaps only God can answer this question,
Because perhaps only God knows.

From Getting Beyond Tragedy, by James Phillips Noble (written in 1968 when Dr. Noble's son, Scott, lost his battle with childhood leukemia)

Tonight, the grief is suffocating. There are no words, no reflections. Only questions. Why? Why? Why?

Fly, sweet Catie, fly!

Thursday, November 16, 2006 2:55 PM CST

Hi, everyone! I have an exciting announcement to make. If any of you would like to volunteer to help, please email me at kristin@curechildhoodcancer.org:

LAUREN’S RUN IS BACK!!!

Lauren’s Run, after taking a 2 year “rest”, is returning as a “new event” to benefit CURE Childhood Cancer! We could not be more excited. For those of you who do not know the history of this very special event, Lauren’s Run was founded 14 years ago by Janis and Marvin Zagoria after losing their precious 2 year old daughter, Lauren, to neuroblastoma. In 2001, Gil and Heather Kochman lost their 20-month old daughter, also a Lauren, to neuroblastoma. Heather and Gil got involved with Lauren’s Run and, for the last several years, Heather served as the Chair of the event. Over the course of its 12 year history, the event, which was held at the zoo, raised more than $2 million for pediatric cancer research at City of Hope Cancer Center in Los Angeles.

I met Heather and Janis at the 2003 Lauren’s Run and immediately wanted to get involved in the wonderfully special event and served on the 2004 Lauren’s Run Committee. The event took a “rest” in 2005 and 2006. But we are excited to announce that a NEW Lauren’s Run will launch on May 6, 2007 benefiting CURE Childhood Cancer.

We would like to invite you to join the Lauren’s Run committee and attend a planning meeting on Monday, November 27th at the offices of CURE Childhood Cancer (1835 Savoy Drive, Suite 317, Atlanta, GA 30341) at 6:30 p.m. Please let me know if you would like to help with the planning of this special event (even if you don’t have a lot of time to spare – like any of us do – we’d love to have you be a part of the effort in whatever way you can!) and if you can attend the meeting. Feel free to bring interested friends!

We hope to see you on the 27th! Let me know if you’re coming! And Happy Thanksgiving!
Kristin

Sunday, November 5, 2006

I was so excited to see so many of our buddies a few weeks ago at CURE Childhood Cancer’s Off Therapy Celebration. As they arrived, I ran to greet them. “HI!!! How are you?” I’d ask as I hugged my long lost friends! Again and again and again, the answer was the same: “We’re SO BUSY!” It was like someone passed out a script ahead of time. As if there was any doubt, I’m now totally convinced that we are all living life at a CRAZY pace!

I know our family is! The weeks just fly by. I can only seem to keep about 3 days worth of “to do’s” in my head at any given time. Don’t ask me about 2 weeks from now! That’s outside of the range of details I can keep in my head. I have to write everything down or I’ll forget what I’m supposed to be doing, where I’m supposed to be and when, which child needs what for school, etc. When did I develop the memory of an 80 year old?!

How can we live like this after we’ve been smacked in the face with the realization that life is precious and we MUST stop and smell the roses? I feel like Mike and I are really, really focused on what is important in life. So why do we run around like chickens with our heads cut off and how do we slow down? Anyone?

My phone rang last Tuesday, and I was excited to hear the voice of my long time friend and fellow neuroblastoma mom, Jen. She wanted to know how I was doing considering the importance of the day. I told her I was fine. Afterall, by the time she called, Brandon had gotten over the complete trauma and embarrassment of having to go to school all dressed up for his school Halloween parade in the TOTALLY UNCOOL costume I made him wear. You see, under the influence of his older brother, Brandon insisted on being a scary monster this year – yep, Superheroes are history…not NEARLY cool enough! But of course, he couldn’t wear a scary costume to school so I suggested he dress up as Flash like last year. Flash is a very cute, very 5 year old-ish superhero. Brandon was absolutely horrified, so much so that he didn’t want to walk into the school. “I don’t look cool!” he insisted as he hid behind the car in the school parking lot with tears in his eyes. It didn’t even help as his friends walked by – “Look, Carlo’s a pirate! Doesn’t he look great? And Tyler’s Spiderman! Awesome!” I tried. “Mom. I’m not going in there! I don’t look cool!” he responded. Sigh. I DID manage to drag him into school, and he DID get over it, but only once the parade was over and he got to shed Flash.

But Jen wasn’t calling about the parade. She called to see how I was handling the 5th anniversary of Brandon’s diagnosis. The anniversary of the first day of the rest of our lives. Not to be too overdramatic here, but there’s pretty much nothing about our lives that resembles life before that day – Halloween 2001. But you know, I hadn’t even thought about it. Until Jen’s call, I had forgotten that it was a very significant day – I had not thought about it as “the anniversary.” Wow, how far we’ve come. There was a time when I couldn’t have imagined Halloween NOT being all about Brandon’s diagnosis. But this year, it really wasn’t.

In some ways, it’s a nice feeling to me to know that we weren’t dwelling on the day as the anniversary of his diagnosis. But I am glad Jen called and put it forefront in my mind. I never want to forget how lucky we are. That night, as the boys trick or treated, my mind was completely focused on how awesome it was that they were running through the neighborhood as fast and furiously as they could, on a misson to get as much candy as they could - and Brandon was leading the way! It could’ve turned out differently. And for some of our friends, it has. I always want to honor them by recognizing and affirmatively appreciating our blessings.

So as the boys finally came in with all of their candy, and I watched as Brandon poured it on the floor and, piece by piece, counted it (180 pieces altogether!), I thought about 5 years ago and how devastated we were – and how terrified we were. I just sat there watching and thanking God for delivering Brandon from the hell of cancer. I thanked Him for changing our lives and allowing us to serve Him by serving others. Our lives are far richer than they were before Halloween 2001. No doubt that our hearts are filled with more pain and sadness than before, but we live far richer, more fulfilled lives.

We had a pretty exciting few days last week when we received a phone call from the Oprah Winfrey Show! They called because they were considering the possibility of doing a “medical miracle” type show and had come across Brandon’s story. WOW! They let us know last week that the show has taken a different direction so it doesn’t look like it will happen – at least right now - but what an honor to even be considered as guests! In my eyes, there’s pretty much no bigger platform for building awareness than the Oprah Winfrey Show. So we were amazed and excited to have been called at all!

The boys are doing great. Ryan is having a good year at school and has loved playing soccer this fall. Brandon is also really enjoying school. He’s in pre-K although he is SUCH a little brother. If Ryan can do it, he can do it! So he insists that he has to practice his “math facts” and have “spelling words” just like Ryan.

October was a difficult month for my side of the family. My dear grandfather died on Oct. 1. He was 90 years old and the quality of his life had been declining for a few years, so we know that his death was a blessing in so many ways. Two weeks after he died, my grandmother – his wife of 66 years - suffered a stroke. It’s hard to know the extent to which she will recover. It has been so hard on my mom, who spent the entire month of Oct. in Florida with my grandmother. It’s been hard for me to know that both my grandmother and my mother are suffering. I want to do something to make it better, but I can’t. It’s just the natural cycle of life, but I think it’s just hard to lose people we love – regardless of their age – and to be unable to comfort our own parents. My grandparents have been such a huge, significant, special part of my life. In my eyes, they have been the PERFECT grandparents. I will miss my grandfather so.

Our hearts have also been incredibly heavy with the struggles of some of our little buddies. So many of you know Catie Wilkins – www.caringbridge.org/ga/catie. We are just covering her and Jenny and Tre’ in prayers as they continue to fight hard. They are going through so much – and with a new baby coming soon. We ask for your prayers for Catie, Joshua, Jake and all those we know are still battling. We have so many new friends who need your prayers, too – Julia, Patrick, Jordan, Cam…you all know the list is too long to name all of these little warriors but they all need our prayers.

Thanks for checking in on us!
Love,
Kristin

Monday, September 11, 2006 12:17 AM CDT

Well, the second annual Tribute to Our Quiet Heroes has come and gone. I spent yesterday and this morning reflecting on what a special day it was - a wonderful day, in my very biased opinion. I couldn't think of how to capture here what the day meant to me so I decided to share the note I wrote to the Quiet Heroes volunteers. They are all so special to me because, without their tireless efforts, the day would not be possible. As I said at the luncheon, the event has taken on a life of its own for many of us. It is not about a single day - it is an important part of our lives. So thanks to everyone who helped and everyone who came!
....................................................

Dear my special friends:

I’m warning you. I’m as sappy and emotional today as they come so get ready…

I should’ve written to all of you yesterday, but after Saturday’s event, I totally crashed. I mean CRASHED. I slept till 10:00 am on Sunday and felt like I needed to lay on the couch all day. Of course, the boys would have none of that so, after a day of playing with them, I hit the pillow hard again last night at 9:00 pm.

This morning as I was driving to the office, I was thinking about Saturday. I was thinking about Trisha Williamson, the Quiet Hero whose mom arranged for 7 of her closest friends to come to the luncheon as a surprise. With tears, she told me Saturday afternoon that it had been “The best day of my life that I’ve had in a very, very long time.” I thought of Pam Milling as she sat in the makeup chairs getting pampered. The last time I saw her was last month at a fundraising event for her daughter, Terry. Terry is terribly sick – that night she was wrapped in a blanket leaning against Pam, looking like time is running out. Pam was having a good day on Saturday because of what we gave her.

I thought of Lynne Bell, whose precious blonde haired daughter, Gracie, died this spring. It was the second child the Bells have lost. The second of two. Their infant son died shortly before Gracie lost her battle to cancer. I had never met Lynne although I followed their caringbridge website. I hugged her and told her how beautiful Gracie was and how much she touched my heart. She cried and I told her that I hoped Sat. would bring her some sense of comfort.

I thought of Liz Scott, and how much of an inspiration she is to me. And Allison. I love her so much. She is as real as they come. I thought of all of you and how much you gave to make the day possible.

Then I turned on the radio and listened to the coverage of 9/11 and the interviews of people whose lives were changed by that tragedy. And I heard them saying what we said – do something with your life – anything – to make a difference to somebody because, afterall, that’s what life is all about.

I thought of tomorrow – the anniversary of Carter Martin’s death. I wondered what Leigh Ann and Scott and Candler will do and how they will make it through. I thought of the next day, Brandon’s 5th birthday and the cruel irony that his birthday is the day after the anniversary of Carter’s death.

And I sat in the parking lot of my office and cried. My tears were sad tears, and happy tears, and grateful tears.

You all are heroes to me. Our lives are all very full and we could decide that we can’t fit one more thing in. We can’t give any more of ourselves. But you all didn’t make that choice. In spite of the fullness of your lives, you gave and you continue to give. We could never have given these moms the day we gave them without the contribution of each person. And we could never have raised the money we raised (don’t know how much yet but I know it’s a lot) for RESEARCH to find the cures, which is the ULTIMATE tribute to these moms.

I cannot think of words that express my level of gratitude to each of you. Accept my thanks and know that I truly love each one of you.
Love,
Kristin

Thursday, August 24, 2006 11:12 PM CDT

Many people have asked me why I don’t write here much anymore. I don’t really know, to be honest. I just haven’t been able to. I can’t explain it. The energy and inspiration to write just hasn’t been with me. I have taken that as a sign that I have just needed the break, the privacy…I have needed to be away from Caringbridge and Carepages. Of course, I’m never really away from it. I live and breathe these children. They fuel my days, sometimes my minutes. Trying to find ways to help is what I live to do. So being unable to write here must represent my need to “escape” into that “normal” world most people take for granted for just some part of every day.

Truthfully, I LOVE my role at CURE. I am such a dork because I get so excited when I talk to people who “get it”. I’ve had days, especially working on the Quiet Heroes luncheon, where it’s like one person after another is so inspired by the pain and suffering of our children that it almost forces them to find a way to help. I can’t even put into words the feeling that overcomes me when this happens. How can there be a greater purpose in life than to try to reach people from the inside out and actually get through to them with the stories of our children and families?! Sometimes I just sit here and I thank God with all my heart for calling me in to this work. While there was been some level of sacrifice, the reward is just indescribable. It’s truly incapable of description.

The Quiet Heroes luncheon sold out yesterday. SOLD OUT. With 2 and a half weeks to go! The auction items have flooded it. Atlanta Magazine is running a FULL PAGE ad. We’re about to reach the $100,000 mark in sponsorships. I remember just last year when this event was just a longing in the hearts of a few committed people to find a way to help. It was just an idea. We wondered if it was crazy to think people would actually buy tickets for a luncheon like this. We wondered if we’d even break even on it. But we did it, and it reflected the love in our hearts not JUST for the kids but for the incredible moms…our FRIENDS. And now look. I feel like the rest of the world (ok, well maybe that’s an exaggeration) has caught on and it’s already a greater success than I could’ve ever dreamed. And not just b/c of the money. It’s because of the feeling…the awareness that has been inspired, the desire to be a part of something bigger than ourselves. It’s just awesome.

Have I mentioned lately how much I love Chris Glavine?! I treasure her so much, not in the least because of who she is but totally because of her heart. She is amazing, with a heart of pure gold. She has earned her place in heaven a million times over, always thinking about how she can use her fame and fortune to help others. I want to be like her when I grow up.

In case you were wondering about someone other than ME (this is Brandon’s site afterall – ha!), the boys are doing wonderfully. They truly had a great summer, the highlight being getting to spend time with their grandparents, aunt and uncles and cousins in Missouri. They are such family kids – they are happiest when they’re hanging out with the extended family, anywhere, doing most anything. I love that.

Ryan started school last week and is happily settling into 2nd grade. He’s very excited about his teacher and being with his buddies. Soccer has started and that makes him SO happy – although I’m struggling a bit with figuring out how to manage a work day, homework, dinner AND two, one and a half hour soccer practices each week. And that’s just Ryan. How do you guys with more than 2 kids all involved in multiple activities manage to not eat peanut butter and jelly sandwiches for dinner every night?! I cannot figure it out!

Brandon starts pre-K on Sept 5. I don’t think it’s hit him that the carefree, lazy days of summer are going to come to an end for him. He’s totally happy doing art projects and playing with the “little kids” at Miss Nancy’s house and I’m seriously not sure if he really understands he DOES have to go back to school. He’s also happily playing soccer on his own team and practicing with Ryan’s team when the coaches will let him!!! And by the way, he may only be 4 but he has NO PROBLEM keeping up with those 8-10 year olds!

I’ve been amazed to watch the boys’ relationship change and grow over the summer. They certainly had and have their moments where I want to put them on the street corner (just kidding – please don’t call DFACS on me!). But they can be so tender with each other…when they’re not wrestling and rough housing with pure delight! I love to see them really look out for and care for each other. So often it brings thoughts of Candler Martin to my mind as I long for him to have his brother Carter to do these things with. I almost always think about the unfairness of Carter’s death when I watch my boys. And I pray that I never take for granted the tender moments or get too aggravated by the squabbling.

Poor Mike has gone through a really long stretch of being completely swamped at work. He’s getting no sleep – staying up till all hours and getting up at the crack of dawn to try to make the days longer so he can get more done. I know he also wants to be doing some of the never ending house projects but there just never seems to be any time. I know we are not alone with these struggles. I just can’t help but regret that we live our lives at such a frantic pace sometimes. It’s exhausting.

I can’t promise to write more often. Who knows when the inspiration will come. But thanks to the 3 of you who are out there still checking in on us (smile)!

We pray constantly for our buddies – for the newly diagnosed children and the chaos and despair that their families are working through, for those who continue to fight hard, and for those on the other side of the battle, whether here or in heaven.

With love,
Kristin

Thursday, August 24, 2006 11:12 PM CDT

Wednesday, June 21, 2006 11:26 PM EST

Nearly a half hour after part one of the documentary "A Lion in the House" concluded, I am still trying to get control of my emotions, stop the tears. To all of you parents who are still fighting the fight, and to all of you whose children are with God now and who watched tonight's airing, I don't know how you made it through tonight. I literally sobbed through the entire second hour. If this documentary doesn't show real hardship, if it doesn't shake up and awaken hearts, nothing will.

I am battling intense emotions right now - I am so sad that the children and families' whose stories are being told are reprentative of thousands of others. The courage of these children, of their parents and of their doctors and nurses is literally beyond description. This should NOT be their lives. It is so wrong that this should be the fate of children. Yet I know that no one says life is easy or that anyone is above pain and hardship. But these are our children, and again, I feel the resolve inside reaching a boiling point. For those of you who watched, you saw with me how life and death hung in the balance, depending on what experimental treatments could be found, round after round of phone calls later. Those who care and those who will have the ability to make sure that these options for families like Justin's and Alex's exist. What if they didn't exist? I keep thinking to myself, "the buck stops here. You can't wait on that elusive 'someone' to help make sure every single avenue is being explored" because God forbid I am ever in the position of Justin's parents or Alex's parents.

I wonder what the reaction will be to the decision of these parents to continue treatment, do everything possible. I take a hard, honest look at myself and know that before cancer, I would have responded with some level of judgment. But not today. Isn't it easy to sit in our living rooms and question whether a parent on tv is going "too far" with treatment, too far to save their child?? But if it's happening to you, how do you not do everything??? How brave of these families to expose themselves to these kinds of questions and judgments! How totally unselfish of them to open up their lives for us to see the unbelievable choices they have to make, all the while thanking God that we aren't walking in their shoes...or weeping with them because we are.

I can't bear to watch part two tomorrow night, but I can't bear not to.

Saturday, June 10, 2006
For the last several months, I have been at a loss for words to put on this website. I don’t know what has caused me to feel so uninspired. Perhaps it’s being so close to so many life and death struggles that it seems more and more frivolous to be posting news of daily happenings. Perhaps it’s also partly that I have been plagued by exhaustion. I don’t know what that’s all about. For a while, I assumed it was the mono/parvovirus combo, but now I’m not sure. I have never gotten so much sleep in my life (having always been one to pull late nighters, with work and home stuff always calling!), yet I have never been so tired. Share tips with me if you have any on how to overcome this!

We have also been reeling from a real string of bad news lately. It seemed to begin with the sad and shocking death of David Cartwright as he left us quickly and suddenly after having just received really encouraging news about the effectiveness of treatment against pancreatic cancer. That was followed quickly by the sudden and terribly shocking death of the 3 year old sister of one of Ryan’s classmates as the family vacationed in Watercolor, Florida. This week, the 44 year old childhood friend of ours slumped over in his car at a red light as he drove to a Braves’ game with friends. He died within 30 minutes.

On top of all of this, we have learned of several new children whose families are friends of friends who have been newly diagnosed with cancer. All of these children and families touch my heart instantly – but these children and families even more so because, I suppose, of all of the personal friends in common.

There are also the death notices we get week in, week out from Egleston and Scottish Rite. Oh, it just breaks my heart.

I was thinking yesterday that sometimes life is just so hard. It’s so hard to cope and deal with these kinds of tragedies. Yet somehow I know that I have to find ways to cope so that they don’t consume me. The only thing I know to do is to respect the tragedies and acknowledge them – because it’s certainly not like it’s possible to ignore them or to not acknowledge them - that approach feels unnatural and almost disrespectful to me (I know, that sounds weird, but it is how I feel). But somehow, there has to be a way to find a place for them. I am struggling with how to do this, but I know I have to figure it out better.

There has been some GOOD news in the midst of the bad – I suppose that is how life works. I cannot even find words to describe the joy in my heart with the news that Jacob Thomson was born on Memorial Day. It is so wonderful to be able to celebrate with Dayna and Alan this magical time in their lives. Holding him was for me, a religious experience. I know many of us have loved the Thomsons and grieved with them. How good it feels to know that Jacob is with them now.

Brandon and Ryan are happily settling in to summer, although both have been stricken with the strep that seems to be going around in epidemic proportions (according to our pediatrician). Brandon also has developed pneumonia, so he’s not his usual spirited self. Again, we are thankful for illnesses that can be dealt with easily with antibiotics and rest.

Finally, I want to let you know that tickets will go on sale online for the second annual “Tribute to Our Quiet Heroes” luncheon on July 15. This event was so incredibly special last year, and the planning of this year’s event has been every bit as special for me and the others who are putting so much into it. We want it to be a day that moms with children of cancer enjoy as their own – where they are honored for their courage and strength, and where they are spoiled simply because they deserve to be. We are trying to accommodate as many moms as possible this year (moms of children with cancer are our guests and are not charged for tickets), so we are REALLY LOOKING for people, companies, supper groups, Sunday school classes, neighborhoods, etc. to sponsor individual moms or tables of moms. For more information, please go to our website – www.quietheroes.org or email me at Kristin@curechildhoodcancer.org.

Hope you all are having a great summer!
Love,
Kristin

Friday, May 19, 2006 11:17 PM CDT

I know I’ve been a long time in updating our site. This is, in part, because the month of May is so incredibly busy. Wow!!!!!!!!!! Between the end of soccer season parties, end of karate demonstrations, school conferences, music programs, assemblies, family picnics, school parties, teacher gifts and thank yous, my mind is just one frazzled mess. I can’t keep up with where I need to be, what treat I need to make, what gifts I need to buy, what days are uniform or nonuniform…I’m not complaining as I’m thankful we’re consumed with this kind of normal living rather than doctors’ appointments and hospital stays. I’m just saying it’s a very busy time of year.

On top of that, I am so busy with work. I absolutely LOVE my new role with CURE Childhood Cancer (www.curechildhoodcancer.org) . I LOVE working with Jill George and Shelley Howard, and I love the pure hearts of everyone who is associated with the organization. I LOVE the passion and compassion of Dr. Woods, Diane Vaughan and all those at Children’s Healthcare who have embraced me in this role and who are helping us grow CURE to maximize our contribution to research. I LOVE getting to do special things for the nurses and child life teams to show them that we appreciate all that they do for our families. And most of all, I LOVE interacting with families every day. I LOVE being able to tell their stories to community groups and individuals in an attempt to inspire people to get involved and help. It hardly feels like a job. My problem is that patience has never been a virtue, and I want to do everything yesterday. So I need to pace myself a little better and accept that positive growth takes some amount of time.

The boys are doing so well. Brandon finished his first year of preschool yesterday. He informed me the other day – and very nonchalantly at that - that he is “the coolest kid in my class. I don’t know why,” he said, with a shrug of the shoulders. And he moved on to a new topic. Too much! I really do need to keep a record of all the hilarious things he says because he is such a funny kid!

Ryan has one more week to go. I am just so proud of him. I am constantly reminded of how tender hearted he is. He is just really a sweet, kind kid. He is so sensitive – and my heart has broken over the last few months with a story here and there of the typical unkindness that tends to go with the territory of being a kid! For example, there were a few weeks of a few boys on the playground telling him he isn’t cool enough to be their friends, or that he isn’t good at kickball or that he is fat (that one just killed me!)…I’m trying to encourage him and prepare myself for this kind of stuff. My Momma Bear side wants to go and squash those little kids …but the rational side knows that that wouldn’t help the situation and I have to equip Ryan to cope with this kind of behavior – AND teach him not to engage in it because I certainly remember times as a child that I’m not so proud of.

We’re really busy with our planning of the 2nd annual “Tribute to Our Quiet Heroes”. Check out the newly updated website – www.quietheroes.org. This year, you can purchase tickets (beginning July 15) online AND sponsor moms online. Please encourage people you know (even friends and relatives outside of Atlanta!) to sponsor a mom themselves or to join together with others to sponsor a mom or table of moms so we can include as many moms as possible. I’m so excited about how our 2nd event is coming together. It promises to be so meaningful and inspiring!

Thanks for checking in on us. We’re always praying for our little buddies!
Love,
Kristin

Sunday, May 14, 2006 1:12 PM EST

To all the mothers who face today with a broken heart, know that YOU are in our thoughts and prayers today and always.

With love,
Kristin, Mike, Ryan and Brandon

Monday, April 3, 2006 8:51 PM CDT

My friend, Jen, from Chicago reminded me yesterday that on March 19, I promised an update “soon.” “SOON?” Jen wrote. “What’s your definition of SOON?” Now, I doubt that all of you have been out there just hanging on for my update…but for Jen’s sake, I’m finally writing.

Truthfully, it’s been very hard for me to write the last few months. I’ve felt kind of “uninspired”. I don’t know how to explain it. Maybe it was the “winter blues”. Well, winter has now passed and all of our pollen-covered cars, decks, driveways, windows and everything else tell us it’s now spring. Time to spring clean my house, my garage, my car and my spirits.

First stop in “spring cleaning of the spirits” was Disney World. We had the best time. We stayed at the charming Port Orleans Riverside, and the boys loved taking the little ferry to Downtown Disney. Our favorite place there was by far the gigantic lego store. Ryan, who absolutely loves legos, could have spent the entire week in that one store and been happy as can be.

Magic Kingdom was our favorite park, and the boys, who are not super adventurous in the ride department, were very proud of themselves that they braved Splash Mountain. They also bragged for a week that they beat their mom on the Buzz Lightyear ride…which came as no surprise to me since I am definitely “challenged” when it comes to video games (I’m convinced there’s something in that male chromosome that makes them come out of the womb understanding those darn games!).

We had some really hilarious moments. One came as we were waiting in a long line for one of the rides when I noticed Brandon - very conspicuously I might add - had his finger up his nose. Trying not to embarrass him, I leaned down and whispered, “Brandon, do you need a tissue?” He looked at me with those wide eyes and jaw dropped as if to say “DUH!” and practically screamed, “I DON’T NEED A TISSUE! I JUST WANT TO PICK MY NOSE!” All the people around us enjoyed Brandon’s comic entertainment. Of course, he had no idea what they were laughing at.

We met "real" Power Rangers, sat mesmerized by exploding cars and motorcycle chases in the stunt show, and cheered wildly as we saw Indiana Jones fall from 2nd story windows...My only regret was the total lack of PRINCESSES! I mean, we were in Cinderella land afterall and my boys would not let me do ANY of the "stupid girlie princess stuff!" No Beauty and the Beast, no Voyage of the Little Mermaid, no breakfast at the Crystal Palace with Cinderella and Snow White! Utterly heartbreaking!

The boys were really very good all week, despite the long days and early mornings. As you can imagine, they did not want to leave at the end of the week. On our last morning, Ryan said, “Why can’t we just stay here? I mean, the hotel is nice and we’re having fun! So why do we have to leave?”

We returned home notwithstanding the protests, and the next day, I started my new job as CURE Childhood Cancer’s new Executive Director. Today began my 4th week on the job, and I can honestly say that every morning as I drive to work, I say “Thank you God for opening this door and pushing me through it.” I learned so much working for CureSearch that was important for my ability to handle this job. But in this position, I feel like I will truly have the chance to DO what God has called me to do…and that is help children with cancer and their families in a meaningful way. CURE has so much potential as an organization, and I am both humbled and moved by the awesome dedication of its board. CURE was founded 31 years ago by parents – just like many of us – who just wanted to find a way to help the ONLY pediatric oncologist in town better diagnose and treat children with cancer. Today, the organization is so much different. I’m in awe of what the dedicated group of parents has created and continued - with Jill George's leadership, of course. And I know it sounds goofy, but I’m really honored to be able to continue their legacy and help try to grow the organization in its reach and efforts. Any of you who are out there thinking you’d like to find a way to help – however big or small - I promise that there’s a place for you at CURE. There’s a lot of work to be done, but it’s such an exciting challenge for me.

Mike has been going through a really busy time at work and while I am so much happier in my new role, it, along with a high volume work load, has added some stress to his life. I guess I should say it is “our” stress rather than his stress, but I accept it much easier than he does. I hope that over time, he will see that we can make this work for our family and that at the end of the day, if we are happy and our kids are healthy, life is good. We’re working on it.

Being in the thick of the childhood cancer world like this is not easy, of course. My mind is truly completely boggled by the continuous new diagnosis. The fact that the incidence rate of childhood cancer continues to rapidly rise could not be more plain to me as the frequency of new diagnosis is nothing less than shocking. Heartbreaking, too, is the fact that several times a week, we learn of children who have passed away at the hands of cancer. It will never get easier to receive this news, and my resolve to fight harder AND FASTER is strengthened each day. So like I said, if you can help, we sure do need you.

We are also saddened as we witness the courageous fights of adults battling cancer – David Cartwright and Chris Glavine’s young cousin, Andrea. Please keep them and so many others in your prayers.

Finally, I ask for prayers for the family of Kathryn Cox, a sixteen year old Chamblee high school who was tragically killed in an automobile accident Saturday night. Our hearts are with Kathryn's family and our dear "Miss Nancy" who is so devastated right now.

Thanks for checking on us.
With love,
Kristin

Sunday, March 19, 2006 11:39 PM EST

I promise to update soon but wanted to at least go ahead and get some pics from Disney World up. I have so many fun pics! We had a BALL! More soon...

____________________

Brandon: “Hey, Mom…when I’m about 30 and Mol (short for Molly, his friend from Miss Nancy’s) is about 30, we’re going to go on a date!”

Me: “Really, Brandon? Are you?”

Brandon: “Yeah. And you’re going to drive us, but, Mom, you know you can’t stay there?!”

Me: “Ok, I won’t stay. Hey, Brandon, Miss Nancy told me that you and Molly were making wedding plans today.”

Brandon – rolling his eyes: “Mom! I am NOT going to marry Molly! I was tricking her!!! I made the WHOLE THING UP!”

Brandon the comedian continues to keep us entertained with conversations like this. I need to keep a notepad with me at all times so I can record the hilarious things he says. He is just so funny!!!

The boys are very excited to go to Disney World for Spring Break. I say the boys, but I don’t know who’s REALLY more excited – us or them!!

Today was my last day with CureSearch. The day is very bittersweet. I am so thrilled for the new opportunity that lies ahead with CURE. In so many ways, it is the job I’ve always wished for. But I find myself feeling very sad today, too…sad that I couldn’t do more for CureSearch, make more of a difference. I know it’s time to look forward and not backward, and I’m really hoping the week at Disney World will be a time of fun and renewal for me. I’m really exhausted – physically, emotionally, mentally, and I need a good battery charge! What better place than Disney World!

Take care and thanks for checking in on us. Prayers for all our little buddies and for all our “grown up” friends who are battling cancer.
Love,
Kristin

Friday, February 17, 2006 11:03 AM CST

Dear friends:

I’m writing to tell you about a big change I’m making in my life. Because so many of you have supported me on my personal journey to make a difference in the world of childhood cancer, I want to explain to you what I’m doing and why. I have tendered my resignation to CureSearch and will turn my focus to helping children with cancer locally, as the Executive Director of CURE Childhood Cancer, www.curechildhoodcancer.org, working alongside my good friends Jill George and Shelley Howard.

My experience working with CureSearch has been many things…enlightening, challenging, emotional, educational…It has filled me with hope and optimism that a cure is within reach and that we live among many committed and passionate doctors who are dedicating their lives to saving our children – both at the bedside and, just as passionately, in the labs.

There are many wonderful organizations out there committed to supporting the search for a cure, and my decision is not a reflection of anything “wrong” with CureSearch. I remain steadfast in my belief that collaborative research is the quickest and most certain way to a cure. I will continue to do my part to support the work of the COG.

But where day in, day out is concerned, each of us has to make decisions about what works for our family and what is most fulfilling to us. God has filled my heart with love for children with cancer and their families, and serving them nourishes my heart and soul. My spirits need a change from working for a big foundation from my home, very far from these children and the daily needs of their families. I am not having the impact I could, and God is tapping on me on the shoulder and saying, “Yes, I need you in this fight, but over here, not over there.”

This opportunity with CURE is just tremendous!!! It will allow me to KNOW the needs of families here in GA much more clearly, and to be much more involved in meeting them. It will allow me to get out into OUR community, among all of the others who are passionately working to fund childhood cancer research, and engage people in the mission. It is time for me to switch directions, and what an opportunity – to have a bigger impact locally than I ever could nationally, in the context of a cancer center that is building national prominence and funding research in our backyard that is of national – and international - significance. My heart needs this change, and my spirits need this change.

I could not be more proud than to be working toward advancing the mission of CURE. CURE has been a part of my life for years as I watched my mom chair “Care Affair” throughout my childhood. Who would’ve ever known the importance the organization would come to have to our family?! CURE and Jill George supported Mike and I when we needed it most. I am proud to now have the chance to “pay it forward” by working alongside Jill and Shelley to do as much to advance research and meet the needs of our families as we possibly can.

Thanks for listening, understanding and caring. Come visit me, Jill and Shelley at the CURE office sometime after March 13! I can’t wait to get started!
With love,
Kristin

Tuesday, February 7, 2006 4:51 PM CST

I’m so excited that I can finally share some details about this year’s Tribute to Our Quiet Heroes. As many of you know, this is a very special luncheon that serves dual purposes. Its primary purpose is to honor mothers of children with cancer, giving them one special day, one special afternoon that is FOR them and ALL ABOUT them. Its secondary purpose is to raise much needed funds to support the life-saving research of the COG.

This year’s event will take place on Saturday, September 9, 2006 at the Buckhead Westin. We have two very special speakers lined up, daytime television star Hunter Tylo (see bio below) and Allison Clarke, founder of Flashes of Hope. Both are, themselves, mothers of children with cancer, and I think both will give moving, uplifting presentations. Allison is a dear friend, and there’s no doubt in my mind that you will find her to be one of the most sincere, tender-hearted, compassionate and inspiring women you’ve ever come across. It’s because of her (and our very own WONDERFUL Amy Green) that Flashes of Hope has come to Atlanta and is providing many of you with priceless, beautiful photographs of your children. To learn more about the event, check out our website, www.quietheroes.org.

We have a wonderful committee that is very dedicated to this event. But we can always use more help. In particular, if you know of someone who would like to donate items to our auction, please let me know. Sponsoring a theme basket (e.g.. gourmet chef basket, family game night basket, Barbie basket, a day at the beach basket, etc.) is a great project for groups like Sunday school classes and dinner clubs, etc, so please pass along my contact info to anyone you know who might be willing to do that. Additionally, we are looking for people, companies or groups who would like to sponsor moms. These sponsorships ($100 each or a table of moms for $1000) is how we are able to open the event up to so many moms at NO COST to them. Without these sponsorships, this event would not be possible, so please pass along the news of this wonderful opportunity to give a special day to a deserving and burdened mom.

Finally, if you did not receive an invitation to the event last year and would like to be added to the list (whether you’re a mom or you want to purchase a ticket), please email me your name, address, email and phone. We do expect the event to sell out again this year.

I’m very excited that our planning is moving ahead at full speed. We can’t wait to see you in September.

QUIET HEROES SPEAKERS:

Hunter Tylo

A former tomboy who broke horses, roped cattle and trained guard dogs, Hunter Tylo is widely considered one of the most beautiful women on daytime television. She has been featured on the cover of TV Guide as one of the most beautiful women in daytime and in People Magazine's "50 Most Beautiful People in the World" in 1993 and 1998.

Raised in the Texas countryside, Hunter once spent her allowance on a mail-order alligator and considered becoming a veterinarian. She had to give up a scholarship, however, to raise a child and moved to Dallas to pursue modeling and commercial work. She gained valuable theatrical experience in the plays of Neil Simon and others, and earned her first movie role in the ABC movie-of-the-week License to Kill.

In 1985, Hunter became the street waif Robin McCall for three years on ABC's All My Children. A role on NBC's Days of Our Lives followed, with Tylo playing the wicked Marina Toscano. By joining the cast of The Bold and the Beautiful in 1990, Hunter has now appeared on all three major networks in top daytime dramas.

Hunter has also made guest appearances on such television series as Dallas, The Family Channel's Zorro and more recently Diagnosis Murder and Burke's Law. She starred in the worldwide hit mini-series The Maharaja's Daughter, which was shot in India and Canada.

Commercial work has always been plentiful for Hunter, who has represented such companies as Canada Dry, Nissan, Naturalizer, Cover Girl and Pantene.

Hunter lives in the San Fernando Valley with her four children, Chris, Mickey, Izabella, and Katya.

Hunter found herself thrust into the world of childhood cancer after the birth of her fourth child when little Katya was diagnosed with retinoblastoma, a deadly eye cancer. The cancer went undetected until Katya was three months old, and she lost her right eye three days after diagnosis. Her left eye was also affected with six tumors but was saved through laser and chemotherapy. Katya is well today.

Hunter is on the board of Retinoblastoma International and started her own charity, "Hunter's Chosen Child".

Allison Clarke

Allison Clarke is the Executive Director and Founder of Flashes of Hope, a nonprofit organization that creates powerful, uplifting photographs of children fighting cancer Allison’s son, Quinn Clarke, was 18 months old when he was diagnosed with rhabdomyosarcoma: in his case, a cancerous tumor in his abdomen. He underwent surgery, a year of chemotherapy and radiation at Rainbow Babies and Childrens Hospital in Cleveland, Ohio. He is now a healthy and happy six-year-old boy.

Allison and her husband, Kip, formed strong friendships at the hospital with other families touched by pediatric cancer, including a boy named Mandwell. Unfortunately, this special little boy lost his brave battle. Allison was in the hospital playroom when she heard the news. She immediately wished that Mandwell’s family had beautiful portrait of him: one that captured his dignity and strength. At that moment, Flashes of Hope was born.

Founded in 2001, through Flashes of Hope, hundreds of children are photographed in hospitals across the country. The photographs, taken by award winning photographers, help the children feel better about their appearance by celebrating it. And, for families of terminally ill children, the portraits preserve the bravery, grace and dignity of their child.

Prior to starting Flashes of Hope, Allison was a Senior Account Executive at Imagio/J.Walter Thompson in Seattle. She began her career in television as a producer for the NBC affiliate in Cleveland and then as an on-air reporter for the ABC station.
Allison also appeared in national commercials and print campaigns as a model. She graduated with honors from Boston College on a full athletic scholarship and was named an Academic All-American. Allison lives in Chagrin Falls, Ohio with her husband and three children.

Saturday, January 14, 2006 4:47 PM EST

Wow, it’s been a long time since I’ve updated this site. Ryan’s GI doctor said it best when he said of the parvovirus B-19, “Well, I don’t see you being one to tolerate the chronic fatigue very well!” Man, was he right. With the holidays and all that went with it, and now normal busy days, I simply haven’t had the energy to write. It is so strange for me to collapse with the boys every night. Working into the wee hours has become a normal part of my life. It hasn’t been lost on me that maybe I needed to come down with some kind of chronic virus to see that that simply is not the way to live, that I needed to slow down, give up the quest for the Superwoman crown, and stop and smell the roses a bit.

The boys are doing great after what for them was a fun holiday. Ryan is such a family kid. There is nothing he likes more than to hang out with aunts and uncles, grandparents and, most of all, cousins. Still at age 7, he cries when he has to say goodbye, and he often expresses how much he wishes our extended family lived closer. He is feeling great, and we are so grateful that his bout with Giardia and c. diff. has finally resolved.

Brandon, with his boundless energy, seemed to get on more than a few nerves this Christmas, as babies crawled at his feet, older cousins tried to play games “by the rules”, and he with his Star Wars toys made so much noise. He can be a handful, for sure. But although rowdy, he is truly a sweet little guy, and I think all the time about how LUCKY we are that he is here, healthy, with fully functioning legs and capabilities. To me, the fact that we were at one point one day and one surgery away from a potentially different reality makes his energy more captivating and profound. Perhaps not everyone has the patience to realize that…but I really do…most of the time.

For me, Christmas this year was a mixed bag. One of the BEST parts of the holidays was having my sister, Kevyn, here with her whole family. Her twin girls are truly little miracles, and I just couldn’t get enough of them. They are a special family, and I miss them so much. What fun it was to get to spend so much time with them.

But hanging over me, and from what I’ve read, many of you, was the bitterness of knowing the hurt that so many of our special friends feel as they simply try to survive the holidays. Nancy Olson said it best in her Christmas letter – I found my joy challenged. Although I wish I could say and mean that we live our lives in a state of utter happiness because of the blessings bestowed on us, it just isn’t so…for any of us, I believe. It’s because this cancer world has brought us together, and from what I see, the hurt of one is the hurt of all. On Christmas eve, I snuggled with my boys as they fell asleep with tears in my eyes as I thought of the Martins, and the Thomsons and the Prescotts and the Alains and the Cullivers…and so many more. My heart ached as I thought of the fear that was at that time invading the lives of the Wilkins and the grueling day in day out battle of the Osbornes and the weariness of the Rivers. I thought of the heavy hearts of the Kindreds as they continue their battle, now also being called on to support their special friends, the Cartwrights, as David fights the battle of his life. This is illustrative – you know it goes on and on with each family that lives in our hearts.

It’s not that I dwell on the negative, but I don’t ignore it either, for it cannot be ignored. This is just part of our life now, and it’s a very real struggle to cope with the mixed emotions that come with it.

I sat with Scott Martin at the Carter Martin Classic in December and have many times since thought about the question he posed: “Can’t you just find someone with millions of dollars - Arthur Blank or someone like that – to take on childhood cancer?” There have been many times over the last month, in particular, when I’ve wished I could just spend a little time with someone like that, tell them the stories of our children and families, and ask them how, with the ability to make THE difference, they could turn away???

So anyway, life goes on. We are making progress with our plans for the second annual “Tribute to Our Quiet Heroes”, which will be September 9 at the Buckhead Westin. If you know the names and addresses of mothers of children with cancer, please email them to me so I can add to the existing database. Compiling these addresses last year was no easy task. After what was an incredibly special day for me last year, I wondered if we’d be able to do it again as meaningfully, and now I can say I have no doubt that we will. It’s shaping up to be as good or better than last year’s event. We’ll be updating the website with details soon – www.quietheroes.org.

Thanks for checking on us. May the new year bring peace to your hearts.
Kristin

Thursday, December 8, 2005 12:38 PM CST

I finally got a hold of Dr. George. He had gone back to prior studies and found where in a fall 2003 scan the radiologist noted a small renal cyst. So this is nothing new and definitely, nothing to worry about. Thank you, God!

I am officially done being the biggest worry wart alive. Ok, so that's stretching it. I'll still worry, but not about this. I can't think of a better Christmas gift than the good health of our children!

And there's more...Dr. George also shared his opinion that he thinks we're done. Done!!! He thinks that at this point, there's no more reason to scan as there's little chance Brandon's cancer will recur.

Oh my! Done?! Forever with neuroblastoma?! Let's hope and pray it's so!

Thanks for all of your prayers and notes of encouragement. We appreciate you so much.
Love,
Kristin

Monday, December 5, 2005 9:23 PM EST

Wed, Dec. 7 8:30 pm
Just wanted y'all to know that we haven't been able to reach either Dr. George or the oncologist in San Fran yet. I'm trying to be patient as I know there are children far more in need of their attention than we are...but still, I just want a little reassurance.

I joke with Mike that my rational side keeps putting my irrational side in "time out", and, just like Brandon, the irrational side keeps trying to sneak out. So I have to stay on top of it. But I'm feeling pretty calm and so is Mike. We feel like things are ok, but we know in our hearts that no doctor beyond the radiologist has even glanced at that report. So we want the consideration and chance to ask questions that our child deserves and we deserve.

We'll post an update when we get the, "it's nothing to worry about!"

Monday Dec. 5
We did not hear from the doctors in San Francisco today and were not able to reach them. However, we did receive the faxed copy of the radiology report as we requested. The results of Brandon’s scans:

“Widening of the left neural foramen at L1-2 with increased fat within neural foramen and enhancement at the superior aspect.” My interpretation – the original tumor site continues to fill in with fatty tissue. This is good news – no sign of cancer at this site!

More:
“There is a 6 mm cyst within the right kidney.”
What???

Now is when you all write to me and tell me that the radiologists can clearly tell the difference on an MRI between a cyst (not bad) and a mass (possibly bad) and that they wouldn’t have used the word “cyst” if they even suspected it wasn’t a “cyst”. Tell me not to worry that the right kidney is next to the original tumor site and not to worry that this “cyst” has never before been present. Tell me that we must all have dozens of “cysts” we develop throughout our lives and surely, if there was even a question, someone would have called us. Tell me to forget all the stories I know about “lumps” and “cysts” that turned out to be more and reassure me that this is absolutely nothing…a purely incidental finding.

I feel a battle brewing inside. The rational side fighting the irrational side:
Rational me: “It’s nothing. A cyst is just a cyst. They would’ve called if there was a remote risk that this could be something to worry about.”
Irrational me: “Who says?! I don’t think either the surgeon or oncologist has even reviewed this report much less considered it with any level of care! How can you feel so sure it's nothing”
Rational me: “What’s wrong with you? Do you just LIKE drama?! Do you just LIKE to worry? There’s nothing to worry about.”
Irrational me: “How do you know? Has anyone even looked at this? Who's looked at this? Who's considered this finding?”

I’m going to call Dr. George in the morning and just get his reassurance that, yes, the radiologists can tell the difference and, no, this couldn’t be anything to worry about. Then maybe I’ll get that good night’s sleep I really need.

Happy 40th Birthday to Mike tomorrow!

Love,
Kristin

Thursday, December 1, 2005 9:03 PM CST

Hello, friends, from a very RAINY San Francisco! Thanks to all of you who have called and left messages or emailed us words of support. It means so much to us to know that you are praying for our little guy and our family. I don't have much to report in the way of Brandon's scans. Notwithstanding having flown across the country and having started the day with a 7:30 AM MRI, we have no results. Without explanation, we didn't even get to see his doctors (although no one said it, I'll choose to believe they must have been attending to an emergency). Instead, we spent a brief few minutes with our surgeon's partner, who is unfamiliar with Brandon's history. His report went something like this: "I've glanced quickly at the images and everything looks fine. But you know, the radiologists review these in great detail, so why don't you call us on Monday?"

.......

BIG SIGH! Now I hate to complain. Really. I know in my heart that the report on MOnday will be that Brandon remains cancer free. But I can't pretend that both Mike and I are not very disappointed with the lack of effort on the part of the medical team to just read the darn images while we're here so that we could sit face to face with the doctors that know our child and his history and discuss his health status and his future care. We are very disappointed, even though we truly believe he is cured, not to have the peace of knowing that today's MRI confirms that.

To be really honest, I'll admit that part of my aggravation comes from the effort we made to get here. As we should have, we made getting out here a top priority in the midst of continued medical difficulties with Ryan. I was in the ER with Ryan until 7 pm Tuesday, the night before we flew out here, and was up late into the night getting my work day in. With the ongoing worry about Ryan and my utter state of physical and emotional exhaustion, we aren't leaving here with a "all's clear" but, instead, a "call us Monday."

I hope you understand that we don't take Brandon's good health for granted ever - not for a second. So I know I should not complain, especially to those of you who live under the weight of such heavy burdens. We are just exhausted, and we really wanted to the peace of clear scans. I guess we'll just have to wait for Monday.

We're going to try to catch an early flight home tomorrow as it's raining and there's no sight seeing to be done in the rain. We need a good night's sleep at home. And then it's time for some Christmas cheer, Christmas trees and Christmas parties with good friends.

Thanks for checking in on us. We appreciate you more than you could ever know.
Love,
Kristin

Thursday, December 1, 2005 9:03 PM CST

Friday, November 25, 2005 3:50 PM CST

What a long day Wednesday was! I have to say that it was a little erie to be in the sedation bay and then nuclear medicine scan room with RYAN! Those places are all too familiar to us, but it is just plain weird to be in them with our "other child". We didn't leave Scottish Rite until after 7;00 pm Wednesday night and Ryan was just over it. As wonderful a hospital as it is, he HATES that place. He is not exactly a calm patient...but I don't blame him.

His pediatrician called earlier today with the results. The scan showed dilation of his collecting system, consistent with the ultrasound. Usually, when they see dialation, there's some kind of obstruction, but his kidney excretion indicated no obstruction. I'm not sure what all that means. Of course, the urologist and GI doc are both out today so it will be Monday before the three docs can consult and figure out a game plan.

We have a CT scheduled for Dec. 6 (Mike's 40th bday!), but it may be canceled. Not that I'm a doctor, but I feel like Ryan's pain is not being caused by a kidney problem but rather a GI problem. I DREAD any kind of lower GI testing, but I feel like that's coming. We'll see. We just need to get to the bottom of this as his tummy pain is interfering with all aspects of his little life!!!

Meanwhile, we are mentally preparing ourselves to head West for Brandon's Dec. 1 MRI. I ask again for your prayers for safe travels and unambiguously clear scans.

Hope you all had a great Thanksgiving yesterday! Despite everything, we did! My mom took on all the cooking herself, bless her heart. We had a great day and got to enjoy the Thrashers game last night. The NHL and the NHL Player's Association have chosen CureSearch as their official charity, and the Thrashers, in support of this, provided tickets and our Thanksiving night entertainment!

Our prayers continue for all our buddies. We're cheering you on, and we love you all!
Love,
Kristin

Wednesday, November 23, 2005
Looks like Ryan will have a scan today to determine the extent of the kidney blockage. We're heading for Scottish Rite in a few minutes. Please pray for answers, but if I could be greedy, I'd like them to not be scary answers...

I ask all of you to check on our dear friends, the Wilkins (www.caringbridge.org/ga/catie). They received difficult news yesterday and urgently need all of our prayers.

Tuesday, November 22, 2005 7:50 pm
I am a little late in putting up Halloween pictures. I lost my camera after the big night of trick or treating and just finally found it.

We are all hanging in there, thankful for some "down time" this week. Ryan is still really having trouble. He finished his course of medication for the c diff and Giardia last Thursday, and the docs say he shouldn't still be having stomach aches that bring him to tears. So they have decided to proceed with an abdominal CT. I think it will be this Friday, but I'm waiting for confirmation tomorrow.

Brandon's MRI has been rescheduled for next week, Dec. 1. We are not planning any site seeing in San Francisco. At this point, I just want to get the scan behind us and get back. Who would've thought when Ryan's stomach aches began over TWO months ago that this would still be going on?! Brandon's been fighting the normal viruses - colds, coughs, now pink eye.

Now is the time I talk about perspective ... Now is the time that I remind myself that this will pass and I think about all of you out there who are dealing with so, so much more. I do have perspective, but I am just so tired...

Happy Thanksgiving to all of you! We do have so much to be thankful for, so many blessings in our lives. Our wonderful, caring friends are among some of the richest blessings we'll ever know.

Love,
Kristin

Sunday, November 13, 2005 12:04 PM CST

When it rains, it ….

Ok, so it isn’t really pouring at our house. But the steady, pesky rain continues. Ryan had some good days and definitely some rough days this week. With complaints of side/back pain and vomiting, I am a little worried about the kidney problem. I’m anxious for the urology appointment to make sure that there’s nothing we need to be addressing.

Brandon has a cold and cough. Nothing serious, of course, but just enough to keep him and me up at night.

So I continue to feel like I have been run over by a freight train. I thought it was just the being a working mom and having sick kids problem, but I found out this week that I have mononucleosis (“mono”) AND the human parvovirus B19. You probably know what mono is – unfortunately, I do since I had it in the 3rd grade and vividly remember how it kicked my behind. The human parvovirus B19 is the strain that causes Fifth’s Disease in kids. Not surprising I have it since both boys did. My dr said it’s rare for adults to get it but when they do, it can take on a chronic form, which I have. And then it causes arthritis, myalgia and “extreme fatigue.” So I suppose I have a double whammy of that, and that explains why I could lay down in the middle of I285 and take a nap.

Sigh. Mike is hanging in there with all of this. He has come down with a cold but so far, nothing else. I suppose he’s pretty tired of my “mood”, but I think he’s going to have to put up with it for a while. My dr told me it could take 6-8 months before I feel better. Ok, I might cry now…

Enough of that "poor me" stuff. I do have a funny story to share. Brandon had a program at his preschool Thursday night, and after the kids “performed”, there was a dinner. We were sitting with a bunch of teachers, having a nice visit when, all of a sudden, Brandon burped. Now, I’m not talking about one of those quiet, nobody noticed kind of burps. His was the big, loud, conversation stopping kind of burp. When he realized everyone was looking at him, his eyes got really wide and he looked at me. I said, “Brandon, what do you say”” And with every bit of seriousness, he leaned over and whispered, “That was totally wicked???????”

Ok, now I think in all the times that I’ve tried to teach our boys to use good manners, I’ve never taught them “that was totally wicked” as an appropriate phrase. “Excuse me”, yes. “Pardon me”, maybe. “That was totally wicked!”, never.

I couldn’t help but burst out laughing. I’m sure that my laughter ensured the life of this phrase.

We’re excited about the Hayley Thomson golf tournament tomorrow. It’s going to be tons of fun and we are just thrilled to be a part of honoring Hayley's memory with this special day. We’re also very actively planning the 2006 Tribute to Our Quiet Heroes. We’re getting close to settling on a date and location, so check back soon.

Take care, and of course, our prayers are with all our little buddies! Catie, Trenton, Jake, Keegan,and so many, many more...
Love,
Kristin

Tuesday, November 8, 2005 8:35 PM CST

Thanks to all of you who have emailed asking about Ryan. He is on the road to recovery, for sure. He is still having trouble with his tummy intermittenly, but he's managing it. His teacher called this morning to tell me he was having sharp pains in his stomach and looked a little pale. She said she asked him if he felt like he needed to go home or if he wanted to try to stay. Even a week ago, I feel sure he would've said that he wanted to go home. Today, he told her he wanted to try to stay. And he made it all day. I'm so proud of him for hanging in there. I know if he'd really needed to come home, he would've let his teacher know. But he was able to get through the day just fine, and I'm really glad that he had the confidence to stay. That's so HUGE from where he was even a week ago.

Brandon has been fine until this afternoon. I am HOPING that his "episode" was just that...a one time thing, maybe a reaction to my not so fine cooking and nothing more.

I am exhausted and feeling sad about all our little buddies who are going through so much. I'm sad to see my mom friends looking so weary. I'm sad that they are living with the worry in their hearts and that their babies are suffering. I'm so sad that this beast has claimed the life of another beautiful child, Victoria Newsome. Some days, it overwhelms me.

Halloween pictures are coming soon.
Love,
Kristin

Friday, October 28, 2005 11:10 AM EST

What a week!!! Ryan is still really struggling with his stomach. His mornings are rough, with lots of pain and cramping and he has to spend a lot of the time in the bathroom. This definitely complicates getting to school. Once there, he is so full of fear and anxiety at being left there, without mom to help him or to speak up if he has a problem. His teachers are wonderful, and the school seems to be committed to helping us, but I'm just having such a tough time with how to help him through this time. He is petrified to eat at school, to go outside to play, to participate in PE...sometimes just to be there. I left him this morning in the hallway with his teacher SOBBING, "Mommy don't leave me! I can't do it! Don't leave!" I want to encourage him and build his confidence but I also know he isn't recovered totally physically, and I don't want to abandon him either. I really HATE THIS!

And did I mention that Brandon is now covered from head to toe with the Fifth's Disease rash?! Ugh.

Here's to hoping things settle down this weekend!
Love,
Kristin

TUESDAY OCTOBER 25
Well, I guess I spoke too soon...that will teach me! Ryan has had a rough 2 days, with continued stomach pains and cramping and increasing bowel movements. His pediatrician called last night to say that he has Giardia, a parasite. I continue to be blown away by Ryan's apparent string of bad luck...Giardia, strep, Fifths, c diff, and a partial kidney obstruction...all at ONCE?! He's home from school again today. He was not feeling well this morning and his class is on a field trip, hiking at a nature center. I didn't want to take the chance that he'd need to come home and be all the way up in Gainesville. His sweet teacher didn't need that stress either!!!

Brandon was up most of the night with a cough. I think I need about 16 days of sleep....

Of course, although it may not seem, I do have perspective. This too shall pass, and thank God for that. We continue to count our blessings for illnesses that are treatable and problems that are fixable.
Love,
Kristin

Saturday, October 22, 2005 10:35 PM
We’ve settled back into the routine of being home, and not a minute too soon! Ryan is really starting to feel better…his coloring is returning, his Fifth’s Disease rash is fading, his stomach is quiet. It is just so great to see him feeling good. He’s spent some time on some of the schoolwork that has piled up and seems almost happy to be doing it! Maybe that’s just a mom’s wishful thinking, but he’s just so much better.

I am really encouraged by his recovery and hopeful that he is on the right path. In the midst of some of my many moments of fear and exhaustion of the past days, I’ve stopped to remember what some of YOU have taught me over the last few years…and that is that we have a choice when we face challenges. Just when I feel like the fear is overtaking me, I have to choose to prevail over it and not to let it hold me in its grips. I know we must remain diligent with regard to symptoms that could be related to a kidney obstruction, but I also know that I must not let the fear of my childrens’ illnesses overwhelm me.

Perhaps it’s just me, but I think one of hardest things about this journey is the fear that invades our lives. It’s not just or even mostly what happened with Brandon that causes that fear to pierce my heart. It’s what I see day in day out, with child after child after child. I know and fully admit that I have got to get better control of my fear. I know this is going to blow you all away in its profoundness, but I think I am finally coming to terms with the fact that there are not JUST 2 types of illnesses in life: simple illnesses (colds, viruses, etc.) and CANCER! A lot lies in between…a lot of conditions exist that are NOT life threatening but can be treated, some rather simply. See, I told you it was profound! But I seriously think that sometimes, when you live so surrounded by cancer, you tend to think any given illness is either the flu or CANCER…and you forget, even if for a moment, that it could be something more serious than the flu but not life threatening.

I was explaining to someone this week that my mind does not always go to cancer when one of my kids is sick. It doesn’t go there first ever. It doesn’t even necessarily go there second or third. But I can’t deny that it eventually goes there when the symptoms don’t subside, when the condition progresses, like Ryan’s did.

Really, I didn’t truly think Ryan had cancer. I really didn’t. But I admit that I was worried and stressed to the max with nearly three weeks of day in and day out complaints and symptoms. I was less than calm on the inside with the news of “internal bleeding”. My heart was in my stomach again at the discussion of kidney obstructions and diagnostic nuclear medicine scans (de ja vu with the MIBG scans).

Today, looking back, perhaps I don’t feel like my fear is justified??? I have spent time today checking in on so many of “my” kids. Victoria Newsome, John Michael, Catie, Trenton, Martin, Jake…among so many others. I feel guilty about worrying over illness that’s “fixable” when so many are fighting for life. Just another way I feel like this journey has “messed” with my sanity. Perhaps it’s called “perspective” – but sometimes it feels confusing to me. The worry and fear are what they are…but then I look around and see everyone else and conclude that my worry and fear were not justified.

Thanks to all of you for your outpouring of love and support. The cards and notes you sent to Ryan really and truly brought smiles to his face, and there are no words to thank you for doing that for him. We are hoping that he’ll feel well enough to return to school on Monday and we can turn our focus on rescheduling Brandon’s scans in San Francisco. I am hoping that I have not picked up this c.diff. or another kind of bug and that my own symptoms are just due to exhaustion.

In closing, I ask that you remember our dear friends, the Prescotts, in your prayers today as it was one year ago that sweet little Shelby left this earth. Our hearts are with Bruce, Faith and Steven today and always.

Love to all of you!
Kristin

Thursday, October 20, 2005 10:15 PM EST

Just wanted y’all to know that we’re home. We were finally discharged at around 6:30 this evening. We needed to have our daily dose of drama first, I suppose.

Shortly after I posted the last update, the GI doc came in with ultrasound results. Mike had gone to pick up Brandon so it was just me and the doc. He prefaced his comments by saying, “Now, I know what you’re going to think…listen to me…it’s NOT neuroblastoma.” Ok, so now that he had my attention! It’s NOT neuroblastoma? What’s NOT neuroblastoma? Then he went on to explain that there was a problem with Ryan's left kidney – a partial obstruction. Further imaging studies are indicated, he said, and the ped urologist was on his way up to talk to us.

I’m too tired to recount all the rest. More drama. Finally some decisions. The bottom line is that there is some obstruction. We don’t really know why or what it means. We don’t even know if that was what was causing his problems initially, with pain on his left side and the feeling that he would throw up, and then all the colon “stuff” (and the strep, and the Fifth’s Disease) confused it all, or whether it had nothing to do with the first 2 weeks of this. The urologist decided that the first thing that needs to happen is the c. diff. needs to be treated and cleared. Once that is resolved, they will reevaluate the kidney situation and go from there. So the plan remains, unless symptoms dictate otherwise, to take 3 weeks of antibiotics for the c.diff. and other infectious stuff, and then repeat the ultrasound with the urologist and assess the kidney situation.

I find this all more than just a little strange. How can one child have an obstructed kidney, strep, Fifth's Disease and C. Diff. all at the same time?!

I’ll write more tomorrow as there is so much swirling around in my mind. I definitely need a little beauty sleep!
Love,
Kristin

Thursday, Oct. 20 11:06 am
Hi, everyone. I only have a second to update but thought I'd try to sneak one in.

Ryan didn't have an ultrasound yesterday afterall. He had just had his lunch when the decision was made to do the imaging, but they can't do the ultrasound unless he's had no food or drink for 8 hours...so, we had to wait until this morning. We just finished with that a few minutes ago. I'm truly expecting it to be normal, but I'm glad the doctor ordered one for that peace of mind.

He has started the antibiotic for c. diff. and truly already seems to be feeling a bit better. We have talked with the GI doc at length, and he does not know that the c. diff. explains all that has been going on with Ryan these past weeks. It seems to explain the bleeding, the severe diarrhea, the abdominal cramping, but not the pre-antibiotic pain. Also, he and our pediatrician agree that it is very strange that a child would have abdominal pain and diarrhea (caused by a virus?), then strep throat on top of that, Fifth's Disease on top of that, and THEN c. diff. But there's no explanation right now.

The plan is to treat the c. diff. with antibiotics over the course of the next 3 weeks. We will watch Ryan and hope that the other symptoms also go away and in the end, we all scratch our heads and say, "Wow, that was so weird!"

Ryan is soooooooo ready to go home. His sweet teacher, Miss Feld, brought over a banner last night that the kids in his class made for him. It nearly covers an entire wall, and he sits and just stares at it, reading all the notes, noticing all the pictures. They also made cards, which we've taped up on the walls, and it is just amazing what these things have done for his spirits. I think and hope he's turning the corner.

I think we're headed home this afternoon. It will be great to get home.

Thanks for checking in and sending all your wonderful words of love and support.
Love,
Kristin

Wednesday, October 19, 2005 11:30 AM CDT

Wed. 3:10 pm
A quick update from Scottish Rite. One of Ryan's tests has come back positive - clostridium difficile..."C.diff." I don't know much about it other than it is treated by a strong antibiotic. But I am asking for your focused prayers because I am worried that this test result could potentially throw off the search for the source of the problems. C.diff. is something that is usually due to antibiotic therapy - the antibiotics kill all the bacteria in the intestines, allowing the c.diff. bacteria to overgrow. Certainly, some of his symptoms are surely due to this. But my concern lies in the fact that his stomach pains preceed the antibiotic therapy by over a week...so what was the source of that pain????It couldn't have been c.diff. bacteria. I think our GI doctor is very concerned about being careful not to assume this is THE answer...to treat it but to keep looking. We're heading to an ultrasound this afternoon.

Ryan has perked up this afternoon and is feeling a lot better than even this morning. But this is sort of how it's gone all this time, so I'm not sure...

Thanks for all the loving and caring words, thoughts and prayers.
Kristin

Please keep the entire Connor family and especially precious Ryan close in thought and prayer during this difficult time. And if you feel so compelled a prayer for the wisdom of the doctors would probably be most appreciated.

Ryan was admitted to Scottish Rite yesterday, copied below is the update Kristin sent out this morning regarding Ryan's current medical status.
_____________________________________________

Hi, friends. Thanks to so many of you for your calls and emails. It was very difficult for us yesterday to be able to take or return calls or emails. I'm sending this from my Blackberry so I'll have to keep it short. I also am only getting this word out to those of you whose email addresses I have saved in my Blackberry and i know I'm missing people so please help me with that.

Ryan was finally admitted around 6:30 last night after having spent the entire day in the ER. As many of you know, he has been sick for over 2 solid weeks now (going on 3). It has been very difficult to figure out what is wrong...so many different symptoms that don't intuitively fit together. The biggest problem has been his stomach, which has been causing him on and off pain the entire time. We've literally been to the ped 6 of the last 10 business days.

Monday, our ped ordered an abdominal x-ray and did a blood work-up. Early yesterday morning, we all grew alarmed when Ryan passed a significant amount of blood. That, coupled with the results of his bloodwork indicated acute blood loss. So our ped sent us to Scottish Rite, where Ryan was to be admitted thru the ER.

Let's just say we got trapped in ER hell yesterday. I will save myself the distress of recounting yesterday here, but suffice it to say that we are finally admitted, in the hands of a gi doc, where we need to be. The apparent bleeding has stopped and his labs are improved. But he is having severe diarrhea, among other things. They have thrown out a few possibilities, but they are all just conjecture at this point. They really don't know what's wrong. I have no idea how long he will be inpatient or how long it will take to figure out what's going on.
Obviously, we have postponed Brandon's scans as we can't get to San Fran right now. I'm trying not to let that worry seep through and stay focused on getting Ryan well.

Thanks again for all of the prayers and concern.
Love,
Kristin

Monday, October 17, 2005 7:16 PM CDT

Once again, I find myself at a place where I am SURE that I have gone insane...overcome with worry, knowing that it is probably not rational, but it is what it is. I hesitate to share this, knowing that many out there in "cyberspace" are dealing with much scarier scenarios. But I suppose if I'm going to keep this website going, at least for now, I should be real. So here goes.

I wrote last that Ryan has had a strep infection in both his throat and his colon. That's what they thought last Thursday, when I took him to the pediatrician for the THIRD time in a week and his throat strep test came back positive. He'd been having abdominal pains, so bad in fact that he almost earned himself a trip to the ER in the middle of the night last week, and so I welcomed the "diagnosis" as an explanation for this pain that otherwise seemed to have no source. The symptoms had been strange - on again, off again - with no real rhyme or reason, so I was happy to have a "cause" ... something we could knock out with an antibiotic and move on with things.

This weekend came, and after a few days of antibiotics, I was sure Ryan was better. If anything would prove it true, I was sure that the weekend's scheduled activities would as it was all fun stuff - Ryan's school's Fall Festival and then CURE's Off Therapy Celebration at Six Flags. But Ryan was not himself. He was white as a sheet all weekend and our time at those fun events was very limited. And as much as he asked to please let him go to those events "that only happen once a year," he asked to go home almost as soon as we got there.

I ran into two families on Sunday who told me that their children's leukemia manifested through stomach aches...exactly like Ryan's. Ok, I told myself...what are the chances that that could happen in our family?! Surely the odds are against us. We couldn't have TWO kids affected by childhood cancer....could we? "No, no, no - chase those crazy thoughts from your mind," I told myself. That's just crazy. "Ryan is just fine," I thought.

Then last night, he melted into a big heap of tears as he begged us not to leave him behind as we go to San Francisco for Brandon's scans. He crawled into bed next to me at 2:30 in the morning feverish, clutching his head complaining of a headache. This morning we discovered him covered from head to toe with a rash. So in the course of 2 and a half weeks, he's had stomach problems, strep throat, head ache, and a rash...but one after the other, not all at the same time. I am so confused. So in we went to the pediatrician for the 4th time hoping for answers.

The pediatrician said his rash is a symptom of Fifth's Disease. It will run its course sooner or later. It could last 3 days to 3 weeks. Strep throat could cause stomach problems, but if it was that, the stomach issues should have resolved by now, after days of antibiotics. So the dr sent us for an abdominal x-ray, bloodwork and is testing his stools for parasites.

He was supposed to call this afternoon with results of the x-ray. He didn't call. I'm trying to convince myself that he just got busy...even though he knew I was waiting on the results, he knew we are trying to decide whether to postpone Brandon's scans, he just got too busy to call....

Tomorrow, we have to make a decision about San Francisco. Everytime I think that another month won't make any difference and we'll just suck it up and pay all the charges associated with changing airline reservations, etc., that nasty little voice inside me whispers ever so quietly, "What if, just what if that one month does matter?!"

Sigh. I've totally lost it.

Please pray for sweet Ryan. He is just so miserable, and it's been 3 weeks now. Pray for clarity for us as we decide what to do and peace if we have to postpone our trip.

Thanks for checking in and for humoring me in what I admit to be my neurosis!
Love,
Kristin

Thursday, October 13, 2005 10:02 PM CDT

Brandon's scans are scheduled for one week from today - October 20. Ryan has been sick for 2 weeks now, with a strep infection in his throat and colon...so he's missed so much school. Nonetheless, there are just times when you need to be a family. For us, this is one of them. So we'll all go to San Fran together. Please keep us in your prayers for safe travels and UNAMBIGUOUSLY clear scans. We'll update from San Fran if we can.
Love,
Kristin

Sunday, October 2, 2005
October is here, Fall is in the air (barely, but it is nonetheless), and we will soon be pulling out the Halloween decorations. I’ve written before on this website about the “season” of Halloween in our house. It’s one of the most fun holidays of the year. We go all out with the front yard decorations. Yep, I’m sure our neighbors would love to put a sign in our yard declaring us the “tackiest yard”. But the boys love it, and so do I.

But there is just one thing about Halloween and the month of October that feels very heavy. It’s called childhood cancer, and Halloween 2001 is when it became part of our world. In some ways, it’s really hard to believe it’s been FOUR years. Sometimes it feels like forty four years. So many aspects of our lives are so drastically different today than before that fateful Halloween. Some are too painful to bring to the surface in a writing. Others are too rich to skip past without reflection.

It is fitting, I suppose, that it would be this month that we have to step back into the world of childhood cancer ourselves. I mean, I live in it day in, day out with my work, but it’s not the same. While my heart is always full of kids with cancer, it’s not MY kid. It’s the hardest thing to explain, but it’s been long enough now since Brandon’s tumor disappeared that the anguish I feel is what the disease does to other children and other families. I live most days without even a twinge of fear that it will come back into our lives for real, as our own crisis. But October brings me there, if ever so slightly.

We will be heading to San Francisco for scans soon. And while many of you go through this very regularly, we are lucky enough to face this only once a year now. I am very calm about this, very peaceful inside. And although I will never “dare” this cancer by declaring it gone forever, I feel peace in my soul that my son is just fine. Still, for me, it’s the reminder that it isn’t just other families’ problem, someone elses’ crisis. At least not in the month of October.

We are still trying to figure out who is going to San Francisco – me and Brandon only or all 4 of us. We’d all go but for the sky high cost of travel in the face of fuel costs. We may still. We’ll work it out. In the meantime, we are staying very busy. Both boys are really loving school and thriving in their classrooms. Brandon is on his first soccer team and, when he’s interested enough in the game – as opposed to what’s for snack after the game, how many more minutes till that time, and what kind of cool bugs are on the field – he’s having fun. Ryan is loving soccer and has improved so much. Mike is coaching BOTH teams, so soccer is keeping him, and all of us, particularly busy.

My work with CureSearch continues to keep me incredibly busy. This week, on Wednesday, October 5, Lance Armstrong and the entire Tour of Hope team ride into Atlanta. There will be a big celebration at Centennial Park at noon. Come out if you can and come see me at the CureSearch booth. If you are free and can help, please let me know. I could really use an extra hand or two.

Below, I’m including the text from an essay that’s running in the October edition of the Gwinnett Business Journal. This was a complete surprise to me, written by Chris Lancette, a friend who attended the Quiet Heroes luncheon. It’s very special.
Thanks for checking in. We pray for our little buddies constantly, and for all our friends who live with the grief and pain this disease brings to their lives.
Love,
Kristin

Saving lives with lemonade
Special girl’s spirit takes root in writer’s front yard
By Christopher Lancette

Tears dropped onto the text of a willowy mother’s speech as she braced herself against the podium and told her little girl’s story.

Liz Scott confessed she didn’t realize why her cancer-stricken daughter wanted to open a lemonade stand. After all, the family lived in frosty New England – and it was January. Perhaps she wanted some toy for her birthday that month, Scott figured.

Far from it.

Alex Scott, then 4 years old, wanted to raise money for her children’s hospital so it might one day save the lives of some of the 12,500 young people in the United States diagnosed with the disease each year. Word quickly spread, people flocked to her front-yard stand, and before long, the little girl raised $2,000 for the Connecticut Children’s Medical Center. Alex’s Lemonade Stand was born.
With 500 people in the grip of her story at a luncheon in Atlanta last month for the CureSearch National Childhood Cancer Foundation, Scott described her daughter’s tireless work, a labor she embraced for four years with loftier financial goals each time around. After the Scott family moved to Philadelphia so Alex could be treated at a renowned hospital, more reporters began to learn of the little girl’s efforts. Alex’s Lemonade Stand found more patrons – many of whom willing to pay considerably more than the 50-cent asking price for the tasty treat. As a result, larger and larger checks went to her hospitals of choice, and Alex was soon being featured in the likes of Time Magazine and USA Today and on CBS Evening News, The Today Show and Oprah.

Unfortunately, Alex would not be one of the cancer patients saved by her efforts. Unable to make it to her ninth birthday, she died last year of the aggressive childhood cancer, neuroblastoma.

By that time, however, her lemonade enterprise had become a national movement. Alex’s Lemonade Stands were popping up all over the country. They’ve now generated more than $3 million for childhood cancer research.

After Scott’s speech, I couldn’t get Alex off my mind – and I suspected no one else could, either. I wanted to do something to honor the girl’s efforts, something symbolic. Driving home aimlessly, I ended up at a plant nursery, where a Japanese black maple found its way into my car. Moments later, I found myself trying to make soil of the abundant red clay and rock in my front yard.

Digging the hole proved more arduous than expected. I looked repeatedly at the little tree and raised my eyebrows." Are you sure you really want to go in here?" I asked. "Put me in!" the little tree begged.

As I wished for a stronger back or a lawn with less rock, the digging dragged on for a while. I kept thinking about Alex. I wondered what her life was like, how hard it must have been. I wondered what source of strength and inspiration prompted her to so bravely set aside her physical agony and put the needs of others first.

The maple staring at me, I thought of the battle it would have to fight to thrive in my rocky yard. "Don’t be afraid, I’ll survive," the tree said to me. "I’m tough." I felt more connected to Alex’s spirit with every small boulder I pulled from the hole. I marveled at her guts, her courage and her tenacity. I saw her as a role model, not just for ill children, but for everyone.

Other women at the September luncheon are putting forth efforts similar to Alex’s, like Norcross resident Kristin Connor, a former business attorney who dedicated her life to fighting childhood cancer after her son Brandon’s malignant spine tumor miraculously disappeared. Her journey has landed her a spokeswoman position for CureSearch. It also has taken her across the paths of many women with whom she can empathize, including the dozen Gwinnett mothers at the luncheon who suffer from the same fear Connor once had about Brandon.

At the same time, Connor also has met women like Chris Glavine, wife of New York Mets hurler Tom Glavine, who has made it her mission to help the cause. Glavine organized the luncheon and raised approximately $100,000 that day with the help of Scott, Connor and Linda Armstrong Kelly, who provided a beacon of hope to moms in pain with tales of her son – seven-time Tour de France champion Lance Armstrong.

After a few hours of digging, an endeavor I felt tied me closer and closer to Alex, I managed to tuck the tree neatly into the earth. It stood about 4 feet tall. I wondered if that was about Alex’s height.

But I felt that something else remained to be done.
A quick trip to the grocery store supplied me with what I needed. Returning to my yard, I poured a few drops of a cold beverage over the roots. I touched my drink to the leaves of my little tree, now named Alex, to toast the little girl who stood for so much. Sitting on my front steps, I again tipped my glass – of lemonade – toward the day’s planting. Ice clinked and a smile stretched across my face as I thought of the story I will tell every guest who comes to visit

Monday, September 12, 2005 1:25 PM EST

I can hardly think of Saturday without choking back tears. I remember a little more than a year ago when Chris Glavine raised the idea of doing something nice for moms of kids with cancer. After shedding many tears with me and Jane Hennessy over Carter Martin’s fleeting battle with Ewing Sarcoma and feeling the pain of all who loved that little boy and his family, Chris just wanted to do something. So we started to brainstorm and came up with the idea of a luncheon. It was going to be around Mother’s Day, a small intimate little luncheon for a few moms.

Our luncheon had no name, no speaker, no form. But with all our hearts, we wanted to do “something”. Over the months, our plans started taking shape, we moved the event from Mother’s Day to September, National Childhood Cancer Awareness Month, we lined up speakers who we thought would have meaningful messages and who would draw attention to our “cause”, and we rolled up our sleeves and got to work. I remember the first meeting with the group of volunteers who had come forward to help – all because they knew a family, a mother, who had inspired them and touched their hearts. I remember thinking how obvious it would be to all of them that I had no idea what I was doing, planning an event like this.

A “Tribute to Our Quiet Heroes” was born. All of us wanted it to be special. We so wanted our friends to know that we love them for the inspiring people they are, for the strength they exhibit – even though they do not feel strong inside. We wanted the world to see these beautiful moms and the kids they are fighting to save. We wanted them to see the families that are forced to live through the most extraordinary chaos and suffering. We wanted them to see that the world of childhood cancer is sad and devastating, but it is also something much, much more. It is a world where moms lock arms and walk together. It is a world of virtual unconditional love and support. It’s a world where people find deeper meaning in everyday living and appreciate the details of life in a way they might not if they didn’t live there. We wanted to show them that it’s not JUST moms and families of children with cancer who live there, but all those who love and support those families, too. And most of all, we wanted to show them that we are not going to sit quietly and pray that someone, somewhere somehow will find a cure for our children…that we are taking things into our own hands and we are making a difference.

Saturday’s luncheon was everything I wanted it to be and more. The emails I’ve gotten, the notes in the guestbook, the entries in other journals bring me to tears. This was a day from deep within the heart – my heart, Chris’ heart and the hearts of every single volunteer who helped. Every detail was attended to with love. I think it showed. I think it’s what made our event extraordinary.

I do not know how much money we raised Saturday. My guess is that we cleared $100,000. But it doesn’t really matter. We did so much more than raise dollars. We did what we set out to do. We showed people the heart of our cause, didn’t we? Didn’t Liz Scott with her powerful, heart wrenching words touch the hearts of everyone there? Didn’t Chris’ tears make you want to drop whatever you were doing to join in and help?

There is much emotion wrapped up in this day for me – Today is the one year anniversary of Carter’s death. It is also the eve of Brandon’s 4th birthday. I cannot think of a better way to honor BOTH Carter and Brandon and their contrasting fates than through our Quiet Heroes tribute. They both propel us to act, to change the world of childhood cancer for other children and families to come. You know what? We can do it. We just did. We can do more if we just try.

I have moments of self doubt that threaten my ability to move forward with this effort. Just yesterday morning I was reflecting on the event, and I was thinking a familiar thought….I wonder when everyone’s going to realize that I’m not REALLY capable…that I have no idea what I’m doing. There are so many sophisticated fundraisers out there. I’m not one of them. But then it hit me. I can do it. I may not be sophisticated, but I believe that we can fund the research that will cure childhood cancer if we just try. I believe in CureSearch and the doctors in the lab that CureSearch funds. But most of all, I believe children with cancer deserve to live a whole life. What more do I need to know. What more do YOU need to know?

Thank all of you who have sent me the wonderful notes. I am forwarding every one of them to the Quiet Heroes’ committee because they are deserving of your incredibly moving words. None of us did what we did for the kind words. But your words empower us by showing us that if we try, we can move mountains.

If you were there Saturday, please take a moment to email Liz Scott and let her know how much her presentation meant to you! liz@alexslemonade.com

Love to you,
Kristin

Saturday, August 27, 2005 10:44 AM CDT

Ryan is officially a first grader. He told me one day this week on the way home that last year, in “pre-first” (St. Martin’s b/t kindergarten and first grade program for kids with summer birthdays and who otherwise need the extra year), he thought he’d NEVER get to first grade. He is clearly so happy, chattering away about his day when I pick him up – as opposed to what I got last year which went more like this:

Me: “How was your day?”
Ryan: “Good”
Me: “What did you do today?”
Ryan: “I forgot”
Me: “You can’t remember anything you did ALL DAY?”
Ryan: “I ate lunch and went outside.”
Me: "That's it? That's all you remember"
Ryan: "Yep!"

I’m so glad that he’s so talkative about his day so far this year. But it hasn’t all been so happy. One day I picked him up and he had had his second day of P.E. Now P.E. is a big deal to him – it’s the first year of no longer just going out for recess, the kids change clothes into P.E. uniforms, and he thinks it’s a pretty big thing. The first week of school, he had been very disappointed with the long anticipated start of P.E. because all they did was “talk about rules”. So I asked him this day, on his second day of P.E., how it was. And this was the converstation:

Me: “How was P.E. today?”
Ryan: “Bad!”
Me: “Bad? Why was it bad? What happened?”
Ryan: “Don’t worry about it!”
Me: “Why? What happened?”
Ryan (disgusted that I didn’t hear him the first time): “DON’T WORRY ABOUT IT!”

I was wondering what in the world happened but didn’t want to be TOO much of a nag, so I let it go until we got back into the car. As he told me about the rest of the day, I thought I’d try again:

Me: “So Ryan, what happened at P.E. today?”
Ryan: “MOM! I said don’t worry about it!”
Me: “Did you get in trouble?” (thinking that must be what ruined P.E. b/c he is so sensitive)
Ryan (with growing disgust at his clueless mother): “NO! I would tell you if I got in trouble!”

So…I’m wondering what in the world could’ve happened that he wouldn’t tell me since it had to be worse than getting in trouble, which he said he would’ve told me.

Me: “Well then what happened?”
Ryan: silence. Then finally, “Ok, I’ll tell you if you PROMISE not to tell Daddy.”
Me: Hmmm, should I make such a promise? Curiosity had gotten the best of me, “Ok. What?”
Ryan: silence.....”We got beat by the GIRLS today!” He proceeds to tell me that the boys played games against the girls that must have been some kind of race and the girls won . . . but ONLY b/c they had fewer people, and it just wasn’t fair, and I couldn’t tell Daddy that the girls beat the boys.

And that was it.

Ahhhhh, so glad to see, after the incident of last week, that my Ryan is back to having normal 7 year old worries and traumas. The girls beat the boys!

Brandon starts preschool on the 6th. He is insisting, however, that he is NOT going to school until he’s a “grown up.” Hmm...should be interesting

Life has been so busy for me with the final two weeks of planning for the “Tribute to Our Quiet Heroes” luncheon. I’m excited about how well things have come together. But I had no idea what went into planning something like this. Whew! It is ALL consuming. Mike’s been patient with all of it...much more so than I probably would be if this was him. We sold out the event (not bad for the first year! :) ) but we dediced to expand the space rather than turn people away so early, so if you’re interested in tickets, please visit the website – www.quietheroes.org, and get your tickets before they’re all gone for good! :)

This week will be exciting as one of my heroes, Kati Tanner, starts working full time with me. Kati is a survivor of Ewing Sarcoma, and she is so dynamic and inspiring. Most of you reading this probably know her. How lucky CureSearch is to have Kati joining our “Atlanta team”. I can’t wait.

Thanks for checking in. Our prayers are with all our little buddies, especially Trenton, Jake, Catie, Heather, Kylie, Joshua…so many more, and always with the Martin, Thomson, Prescott, Alain, Hampton and Phillips’ families.
Love,
Kristin

Monday, August 15, 2005 11:32 PM CDT

I do not know how to begin to put into words what happened at our house tonight. I’m so totally thrown for a loop. We were sitting at the dinner table tonight, and I was trying to tell Ryan something discreetly – about something he gets to do but Brandon doesn’t get to do. It was obvious that Brandon’s ears were perking up and we needed to have our discussion later. I told Ryan we’d discuss it later, and when he persisted, Mike and I both tried to divert the conversation and let Ryan know we’d talk in private with him. I DON’T KNOW HOW OR WHY, but Ryan drew his own conclusions. His face grew sad, and he sat across the table, unable to eat. A few seconds went by, and he got up, came around the table and whispered in my ear, choking back tears, “I need to talk to you, Mommy.” So we went in another room and I said, “Ryan, what’s the matter?!” And he said through his tears, “I…think…I…know…why…you …can’t…talk…in front of…Brandon.” And the tears were pouring down his cheeks and I said, “What, Ryan?! Tell me what you think.” And as he cried, he said, “I can’t. It’s too sad.” Now I have no idea why I even thought I knew what he was thinking. But I knew. And I lifted his chin up and said, “Ryan. Are you afraid Brandon is sick?” And he burst into sobs. And I hugged him and explained that Brandon is NOT sick, and that I wanted to tell him about this special time he gets to have and that I didn’t want to upset Brandon by talking in front of him since he doesn’t get to have that special time and that was ALL! I assured him that Brandon is fine and will continue to be fine and that if we ever find out that Brandon isn’t fine, I will tell him. So he never has to worry that we aren’t telling him something like that. And he said, “Are you sure Mommy? Are you sure he’s not sick?” And by this point, I was choking back tears and I hugged him and assured him that Brandon is NOT sick, and that he is the BEST big brother in the whole world for loving his little brother as much as he does.

Ryan dried his tears and got himself together and finally went back to the dinner table. And he finished his dinner like everything was fine. By the time the evening was over, the boys were back to normal, picking on each other, fussing over toys…normal brotherly stuff. Yes, Ryan is over it. Whatever just happened, he is over it.

But I am not over it. I am just sitting here wondering where that came from. I mean, you have to know Brandon. He is happy and funny and so “spirited” (how do you like that word?!). He is the picture of health. We don’t talk about Brandon having had cancer with any regularity, and we certainly DON’T talk about any possibility of its return. So WHERE did that come from? And like any “good” mom (ha ha ha), I am wondering what I did to cause it. And so the inner conflict begins...or, continues, as it may be.

This whole past year, as I’ve pursued my leave of absence from my law firm and worked with CureSearch, has been such a learning experience. Every single day of it. I took the leave of absence because I truly felt “called” to do to “join the fight.” I know some of you reading this must think I am totally crazy. I never believed in things like “callings” before it happened to me. But then it happened. And it was so clear. I became educated about how little is being done on a national scale to fight childhood cancer compared to that which is being done about other diseases and social issues, and it felt very, very wrong to me, and I felt like I was being called to make whatever difference I could make. I stepped away from a steady career where I could keep childhood cancer at arms length, into a world where it is all consuming. I work from home. It’s always here. My heart carries the burdens of the families and children I love. I am working my heart out to make a difference for them, for our doctors who are so dedicated to our children. And that has been good. It’s right. It’s what I’m supposed to be doing. Not everyone is supposed to be doing this. God has a plan for each of us. His plan for me is to do this. And of that I am certain.

But has it been and does it continue to be good for my family? Is it good for my 7 year old to fear his brother is sick only because his mom is always “involved”, and therefore, the tragedies of other families are known to him? I know we can’t shield our kids from everything, but how much is too much? Am I sacrificing their well being for my own pursuit? Of that, I am uncertain.

And so the conflict brews. We visited Northpoint on Sunday and heard Andy Stanley preach a really powerful sermon. The title of the sermon was “Cutting through the fog”, and his point was that when we look into a situation and see with clarity something that needs to be done (i.e. what should be and could be), that clarity brings about an irresistible urge to act. Like, let’s say, for instance, we see the whole state of childhood cancer clearly – more money COULD be raised to fund research that WILL someday cure our kids and SHOULD be being raised…you see where I’m going. How can you not act when you see this with clarity? But then, Andy talked about how difficult it is to maintain clarity and how losing that clarity takes away our compulsion to act. Our vision gets “fogged” …especially when we hesitate, and that fog causes us to lose our clarity and our urgency to act.

So what is fog and what is not fog? Ryan and my kids and my family are not fog…I know they are not. I am certain of that. What is not good for them is not good.

Yet I am still certain that I was called to TRY to help this cause, these kids. I don’t know why. I just was. I am certain of that, too.

Sometimes I feel like I am losing my mind.

Other than being saddled with a crazy mom, the boys are doing great, but for this incident tonight. Ryan starts first grade on Thursday, and Brandon starts preschool after Labor Day. Wow. How did they grow up this much so quickly?! They have had a great summer, but we look forward to the school year with excitement.

Our prayers are with all of our little buddies, and all of our friends who continue with their own struggles. We love you!
Kristin

Thursday, August 4, 2005 11:55 PM CDT

“When mountains fall,
When rivers rise,
Security crumbles before your eyes.
One thing you know,
In faith you'll find
Something to stand on
Or you will be taught to fly”

As we try to cope with the loss of our little buddy Ethan (www.caringbridge.org/ga/ethan), it feels a lot like mountains are falling and rivers are rising. Can you imagine a world where mountains ACTUALLY fell? That would be insane. . . Yes, that would be as insane as a world where 4 year olds die of cancer. The heartbreak is so intense that I can’t imagine how Julie and Chris and the rest of Ethan’s family will live through this, yet I know they will somehow do that. I know it because I have watched others walk this road, and by the Grace of God, they find a way to put one foot in front of the other. It’s insane that there are SO MANY others who have walked this road, and tonight, once again, my heart bleeds for them, and I admit that I am on my knees begging God that I never walk among them.

“You stand on the edge,
You've followed the call.
No turning back, you are risking it all.
He whispers your name
In a moment of truth
The rocks fall around you,
The ground starts to move.
You step out on faith
It's all that you know
You jump into darkness and hold onto hope.

When mountains fall,
When rivers rise,
Security crumbles before your eyes.
One thing you know,
In faith you'll find
Something to stand on
Or you will be taught to fly

So dream your dreams
And live your life
Knowing there's more than to merely survive
Don't give up, don't give in
Fight through the rain and lean into the wind
Til you come to the edge of all that you know
Run right through the dark knowing you're not alone

When mountains fall
When rivers rise
Security crumbles before your eyes.
One thing you know,
In faith you'll find
Something to stand on or you will be taught to fly.

When you walk through the fire
It will not consume you
Though the water will rise
It won't overtake you
Though the mountains will fall
Oh, still I am with you
I've called you by name
And I will not leave you
I'm learning to trust you, I'm learning to fly
I'm learning to trust you, I'm learning to fly”
By Mark Schultz

Saturday, July 30, 2005 11:42 PM

Ok. There’s something on my mind. If you came here to check on my precious boys, let me just say that they are great – as wild and funny and fun (most of the time) as ever. I will write more about them next time. For now, though, I’m going to deal with something else…I just can’t go another day without putting it right out there on the table. So here goes.............................

I’m SORRY. There, I said it. I’m SORRY.

For all those moms who have not gotten personal invitations to the Quiet Heroes luncheon, I’m sorry. I have tried so hard not only to get as comprehensive a list of moms as I could manage, but also to get physical addresses in the times of HIPPA laws and privacy policies that prevent hospitals and other organizations from sharing personal information (like street addresses) with me. It’s been an enormous task for me to do. I’ve tried my best and I’ve failed some of you. It hasn’t been intentional. I’m sorry. Whether you’re there or not, with all my heart, I promise that you are being honored for your profound example and inspiration.

For those moms who did get invitations but who didn’t want them b/c this event is too difficult for them, I’m sorry. I didn’t mean to cause you pain or seem insensitive. I just wanted to include you…to honor you, too.

For those non-moms who didn’t get personal invitations, I’m sorry. This was never meant to be an “invitation only” event. Anyone can and is very welcomed to buy a ticket. For information, go to www.quietheroes.org .

For those of whom I’ve asked too much and for those of whom I haven’t included enough, I’m sorry.

For those who came to Thursday’s Braves’ game, Major League Baseball’s launch of the 2005 Commissioner’s Initiative for Kids, and whose children weren’t included in the ceremonies, I’m sorry. If I could’ve put 5000 kids on the field, I would’ve. For those into whose hands I did not get tickets, I’m sorry. I had less than a week to try to get tickets into the hands of as many families as possible. I did my best. I failed some of you and for that, I’m sorry.

I will never be sorry for trying with my heart and soul to serve children with cancer by trying to raise the public consciousness of the horrors of the struggles that befall them and their families. I will never be sorry for dedicating my days to raising money so that someday our babies will ALL be cured. But the devil is in the detail, and sometimes, it is just so apparent that it’s impossible to make everyone happy. In fact, some days, it feels like I am making no one happy.

So let me say it once more after weeks of utter, tired to the bone exhausting effort…I’m sorry. I hope you will be generous in your forgiveness.
Kristin

Thursday, July 21, 2005 7:54 PM CDT

Have you ever heard a reference to “Aha moments”… those moments when the lightbulb goes off – when you realize something really, really important? I had one of those in the middle of the night last Friday night/Saturday morning. It was about 2 am, and I was on my way home from the airport. My flight from Chicago was delayed due to bad weather, so it was late and quiet on my drive home. I was in Chicago for a golf tournament hosted by the Jeffrey Pride Foundation, a small foundation founded about 6 years ago by the Pride family, whose son, Jeffrey, died at the hands of ALL. Little Jeffrey Pride died 3 days after his 7th bday. It occurred to me as I sat at dinner with Jeff’s mom and dad, Ann and Jim Pride, that I was meeting them for the first time EXACTLY 3 days after my Ryan’s 7th birthday. Seemed like a chilling coincidence to me.

It was such a great time with the Prides and their friends. I worked the tournament and, at the end of the day, was almost sad to say goodbye to them. They are a precious family with such an incredible community of people who love them and supported them in their efforts with the foundation through the tournament and beyond. I was just driving home Friday night and the tears just started flowing as I reflected on the day. This scene – of a family struck by the tragedy of childhood cancer, surrounded by a community of loving friends and families who are both so humbled by the struggles that they would do just about anything that family asked of them, is repeated thousands and thousands of times in communities throughout our country. I don’t know if I can even articulate what I feel – but I just see how people feel, people who desperately want to help, to do something to ease the burden of the family they love, and I think if we could just bottle that, if we could bring all those people together, we could make such a difference in this fight. I was listening to one of the accomplished pediatric oncologists yesterday talk about how we are now in the toughest leg of the race to cure this disease. He said that we’ve made a lot of progress and are in the final miles. But the final miles are the toughest, with the toughest kids to treat, the toughest discoveries to find. I guess I just see the whole picture and it feels so possible if all of the efforts are streamlined in the same direction…I don’t mean by this that I think everyone has to support the same organization. I just wish we could bottle the energy to find a cure and throw it all to the researchers to carry them through the final, toughest miles to the cure.

Every day as I continue my work, I seem to feel more energized, encouraged, heartsick, and desperate all at the same time. The emotional turmoil is so tremendous. Yet, my new friend Julie reminded me that God did not introduce me to the world of childhood cancer as a burden to carry, but as a privilege. He allowed me to enter into this world without being entrenched in it. When I was with the Prides and their friends, I felt so privileged to be among them – to be welcomed with open arms into their world, their loss and their fight, which is my fight, too.

It would not be honest to say that the privilege does not include a burden, too, though. It does, and some days I can feel that burden in my shoulders, back, neck…in my heart and soul. It is SO HARD.

Thanks for continuing to check on us. So many of you offer us such kind and generous words of encouragement. You keep us going. Thank you.
Love,
Kristin

Sunday, July 10, 2005 8:36 AM CDT

Hello, friends. Another month has gone by since my last update. This summer is truly flying by. We returned last night from a trip to upstate NY, where we visited with my sister and brother in law and their precious twin baby girls. I am ashamed to say that this is the first time I’d seen my nieces in person. What miracles they are. Kayla was born at 26 and ½ weeks gestation, weighing barely a pound and a half. Keira was born 17 days later weighing 2 lbs 12 oz. They were in the hospital for 91 days before coming home in December.

It’s hard to believe these little miracles are nearly a year old. It seems like they were just born, just fighting for their existence. But now they are beautiful, PERFECT little baby girls. They are truly miracles to our family, not just for the fact that they have survived and are thriving after such an early birth, but also because of what my sister has gone through to have them. After trying for years, suffering three miscarriages and attempting IVF no fewer than 5 times, the years of heartache for my sister and brother in law, and all of us who stood by helplessly praying for their success, are erased by these two little girls. And while usually my reminders of the preciousness of life come through experiences with childhood cancer, these little babies remind me just the same.

We had a great time in NY. We watched people “soar” in glider planes from the top of a mountain, we saw fireworks and played lots of games. I think the boys’ favorite day was the day we spent at the Corning Glass Museum. They got to make their own glass ornaments, truly blowing the glass themselves. They are so proud of their creations. I added pictures of this this morning, so check them out.

On the way home, we stopped in Hershey, Pennsylvania to see Chocolate World. It was so neat to see how the candy is made and, of course, to taste all the samples. Brandon was totally wound up, and it was one of those days when I wondered where he gets his endless supply of energy and how I get through to him that he can’t just wander off in crowds of people, but it was fun nonetheless.

And while we’ve been having such a busy time, all of the fun has been tempered by all that is going on with our friends. We were truly utterly heartbroken to learn that precious Ethan Alain has relapsed. Just a few weeks ago, we were playing with the Alain family on the beaches of Sea Side and laughing hysterically as Ethan told what has become my kids’ all time favorite joke during the Lighthouse talent show: “How do you make a tissue dance?” “Put a little boogey in it!” Julie and Chris, our hearts are with you, and we are praying for Ethan and all of you.

Our friend, Kendrie Escoe, was sick and hospitalized for 8 days, and we’re happy that she is feeling better and home now. Catie Wilkins just underwent surgery and, while she’s doing great, they learned that tumor remains in her head. We are encouraged by their faith and the good treatment options that remain for her, and we are constantly praying for Catie’s cure. Trenton Kindred has been in and out of the hospital, and we know that the Kindreds are weary as they continue to fight. Our sweet friends the Rivers have been knocked off their feet by the news that Jake relapsed. Ryan Connolly, a little boy from Michigan, who was diagnosed with “low risk neuroblastoma” at the same time as Brandon died last Friday. There are too many to mention by name. And, of course, too many of our friends continue to struggle to make sense of each day without their children. We can never escape the reality of what this disease continues to do to so many kids and families that we love. As Kristie Escoe says, “Cancer sucks!”

Sometimes I think it is such a strange existence, to constantly live with such a heavy heart. On the one hand, I think we are no different than anyone who feels compassion and empathy toward others who are suffering. Yet, I don’t remember feeling like this all the time before our child had cancer. I had lunch a few weeks ago with my friend, Lynne Anderson who writes for the AJC, and I was filling her in on everybody. She truly has a heart for all of our families, so she always wants to know. As I talked, she just shook her head and said, “I don’t know how you keep your spirits up.” I thought for a second and gave her the most honest answer I could muster – “Sometimes I don’t.” As most of you know as you share these same feelings, it’s just plain hard.

Now that we’re home, we’re settling in for a while. Ryan celebrates his SEVENTH birthday tomorrow. Seven. It’s hard to believe. I always get really sentimental on my boys’ birthdays. But this year, it’s different. I remember last year feeling kind of sad that my baby was growing up and being reminded by other mothers who longed to be sharing another birthday with their children of how lucky I was to have had another year with mine. So this year, I don’t feel sad at all, but incredibly happy that Ryan is healthy, happy, and so kind hearted.

And as we get ready to celebrate Ryan’s birthday, it seems like a good time to share a song I heard recently – you know, the kind of song that you’re convinced somebody wrote for you. This one completely captures my hopes for my boys. It’s called “Find Your Wings” by Mark Harris of 4Him:

It’s only for a moment you are mine to hold
The plans that heaven has for you
Will all too soon unfold
So many different prayers I’ll pray
For all that you might do
But most of all I’ll want to know
You’re walking in the truth

And if I’ve never told you
I want you to know
As I watch you grow

I pray that God will fill your heart with dreams
And that faith gives you the courage
To dare to do great things
I’m here for you whatever this life brings
So let my love give roots
And help you find your wings

May passion be the wind
That leads you through your days
And may conviction keep you strong
Guide you on your way
May there be many moments
That make your life so sweet
But more than memories

I pray that God will fill your heart with dreams
And that faith gives you the courage
To dare to do great things
I’m here for you whatever this life brings
So let my love give roots
And help you find your wings

It’s not living if you don’t reach for the sky
I’ll have tears as you take off
But I’ll cheer as you fly

I pray that God will fill your heart with dreams
And that faith gives you the courage
To dare to do great things
I’m here for you whatever this life brings
So let my love give roots
And help you find your wings

Happy Birthday, sweet Ryan.

Thanks for checking in on us.
Love,
Kristin

Friday, June 17, 2005 2:58 PM CDT

Hi, friends. I know it’s been a long time since I’ve updated. There are several reasons for that. First, WHEW, what a whirlwind it’s been the last month. May is a crazy month with all of the end of school activities. Ryan was actually really sad on his last day of school. His tears as he said goodbye to his teachers and turned to leave the room still cause a lump in my throat. St. Martins has been such a wonderful school for him.

Right on the heels of school ending, we headed to Seaside, Florida for the Lighthouse Family Retreat (www.lighthousefamilyretreat.org). This was our second trip to Lighthouse, and it was just as special and amazing this time as it was the first time we went. I am totally awed and humbled by the generosity and depth of caring of those who give up their own vacation time to serve families of children with cancer. The mission of Lighthouse is to give families an opportunity to get away, reconnect and have some fun, all the while bonding with other families who have walked similar journeys. Families are paired with “Family Partners”, whose goal is to make sure that their family has time together, free of everyday chores like laundry, cooking, even watching the kids every minute of every day. Our family partners were so totally special. Michelle and Andy, you touched our hearts to their very core. We love you and will carry you in a special place in our hearts forever.

Unlike last year, this time, we did not know most of the other families at Lighthouse. Actually, there are several websites I’ve followed for a long time – Ethan Alain, Ali Jackson, Ryder Ewing and Madie Ice, but I had not met the families in person for the most part. We had the BEST time getting to know all of them and all the others who were there with us. It’s an amazing bond that forms at Lighthouse, and we are so grateful to have so many new and special friends.

We returned from Lighthouse last Saturday, escaping Tropical Storm Arlene, and left Monday for Washington, D.C. for CureSearch’s Gold Ribbon Days. That, too, was an incredible experience. An unprecedented number of over 300 individuals, including family members, patients, survivors and health professionals attended the event from 31 states. Throughout Gold Ribbon Days, multiple members of Congress addressed the crowd of participants acknowledging their efforts and praising them for their courage. Keynote speakers included Senator John Kerry (D-MA), Senator Jeff Sessions (R-AL), Senator Blanche Lincoln (D-AR), Congresswoman Deborah Pryce (R-OH), Congressman Michael McCaul (R-TX), Congressman Patrick Kennedy (D-RI) and Congressman Robert Menendez (D-NJ).

Bob DuPuy, President and Chief Operating Officer of Major League Baseball, spoke at a Congressional Reception in which Major League Baseball honored Congressional leaders and commended them for their support for additional funding. Mr. DuPuy emphasized Major League Baseball’s continued commitment and invited the Congress to participate in this summer’s league-wide promotion to raise awareness and funds for childhood cancer research. Mr. DuPuy announced that the promotion, the Commissioner’s Initiative for Kids that resulted from Tom Glavine’s efforts last summer, will run from August 7 through September 5 and is expected to involve every major league team and raise over $1 million. Major League Baseball plans to make public announcements during the All-Star Game Festivities in Detroit, July 8-12.

My kids were excited to meet Miss America 2005, Deidre Downs, who spoke during the keynote session and participated in the entire event by interacting with families and taking pictures with the children. Ms. Downs also met with 15 key members of Congress throughout the event in order to raise awareness of childhood cancer and the need for increased federal research funding to support the work of the Children’s Oncology Group.

Needless to say, it was an incredibly busy, intense but fun-filled week. We returned home last night, and now it’s back to business for me. I’m so busy planning our Sept. 10 luncheon, “A Tribute to our Quiet Heroes”, honoring moms of kids with cancer. We are actively looking for both corporate sponsors of this event, hosted by Chris Glavine and featuring keynote speakers Linda Armstrong Kelly (Lance Armstrong’s mom) and Liz Scott (Alex’s mom, of Alex’s Lemonade Stand). If you have any contacts who might be interested, please email me and I will send a sponsorship packet. Also, we are doing a silent auction so if you have any items you’d be willing to donate or if you know anyone who does, PLEASE let me know.

The other reason for the delay in my updating is…well, my heart has just been so totally heavy with the struggles of so many of my friends. One of our dearest friends, little Jake Rivers (www.teamrivers.com) , relapsed recently, much to all of our shock and horror. My heart is so heavy for Jake, Ellianne and Brent, but our prayers are stronger than ever and we believe with every cell in our bodies that Jake will be cured. Our hearts have ached, too, as our new friends, the Kindreds (www.caringbridge.org/ga/trentonsjourney) have been on the worst of all roller coaster rides.

We also know that so many of our friends are grieving. There’s not a day that goes by that we don’t think of the Martins, the Prescotts, the Thompsons, the Phillips, the Hamptons and so many others.

So in the face of those monumental struggles, it’s just hard to find any rationale for updating our website about the trivial details of our everyday. It may not be exactly rational, but I feel almost guilty to keep up this site, like somehow updates suggest that our journey is worthy of the interest. We are so grateful to have days filled with “normal” stresses as they concern our family, normal fun, normal activities. There are so many who would give anything to be in that place.

It is for all of those friends, and the hundreds we don’t know but who nonetheless inspire us, that we spend our days fighting for a cure. We hope you’ll join us, helping us reach the day as quickly as we can.
Love,
Kristin

Thursday, May 19, 2005

"This is what it means to be a mother, I realized. It had nothing to do with being old enough or knowing everything or keeping to a strict schedule. It had to do with loving someone with a love so huge, the rest of the world became insignificant by comparison. No fear I felt would ever amount to anything, compared to what I felt for my child. No task would ever be too hard for me. No one would ever be able to make me feel small. I was The Mama. You don't get any bigger than that."

- Linda Armstrong Kelly from "No Mountain High Enough: Raising Lance, Raising Me"

As the planning for the September 10 luncheon honoring moms of kids who have or have had cancer picks up, I am getting really excited. I have such high hopes for this event. Not as a fundraiser. Of course, I wish every event could be a fundraiser since more money equals more research, but in this case, the fundraising is totally secondary. My hopes are to put on an event that communicates at every single moment, in every single way what is in my heart. I was just driving home today thinking about this event and I got all choked up. Now, I have indeed turned into the biggest sap in my "old age", but I was thinking about our moms and truly, how deserving they are. I want them all -- regardless of the outcome for their child -- to be honored for their courage, for their strength, for their beauty, for their inspiration. These families have touched my heart in a way that is indescribable.

We have will have two very special honored guests and speakers at the luncheon. First, Lance Armstrong's mom, Linda Armstrong Kelly, is coming!!! Second, Liz Scott, Alex's mom (Alex's Lemonade Stand) will also be with us. I can't wait to honor these two amazing moms and hear what I know will be amazing inspiration.

I don't want to spoil anything, so no more details now. But keep checking back...it's going to be incredible!

My boys are doing great, but for pesky colds and croup that won't seem to go away!!! One day when I wasn't looking, Brandon turned into a full fledged comedian. I can't do justice to how totally hilarious this is, but he will be playing nicely and then all of a sudden, he'll jump up and exclaim, "LET'S GET THIS PARTY STARTED!" and start doing this wiggley dance routine. It is SO funny to hear a 3 year old singing "let's get this party started!" Yesterday he reminded me that "GIRLS DROOL and BOYS RULE", too, just in case I forgot. He and Ryan have tatooed their chests with "SOCCER ROCKS" - so don't be surprised if he suddenly pulls up his shirt to show you his abs and latest tatoos. He is hilarious.

Ryan is winding down the school year, finishing on June 1. He's so excited for the carefree days of summer. Come to think of it, I am too - well at least the "days of summer" part (minus the "carefree"!). May is such a busy month with field days and end of school parties and school assemblies and picnics...but I wouldn't have it any other way. We have been so totally blessed this year with warm and nurturing teachers who absolutely adore him. But what's not to adore!?!

Have a great weekend, everyone!
Love,
Kristin

Sunday, May 8, 2005 9:26 PM CDT

Today as I sit here on this beautiful Mother’s Day, being spoiled by my sweet boys and spending special time with my own mother, I realize how unimportant the whole National Enquirer mess was. As much as I don’t want my children’s pictures in that magazine, it won’t be the end of the world if they end up there. I have loved today – every minute of it. Yet at the same time, my heart has been so heavy with thoughts of Leigh Ann Martin, Faith Prescott, Dayna Thomson, Nikki Hampton, Patti Philips, Liz Scott and all the other moms who have had to endure a day of unimaginable pain. Yes, when I think of them, I know that none of the strife in our lives is significant at all. So I have decided to put the pictures back up on this website because it is important for ME to see those little faces when I come here and be reminded every day what life is all about.

Mother’s Day is by far one of my favorite days. It’s a day to reflect on how lucky we are to be moms and how much our children enrich our lives. It’s a day for homemade cards and lots of big hugs. It’s a day to not just think about but to FEEL how precious my children’s little lives are. As much as I try not to, sometimes I think I let this slip out of the forefront of my mind, as I struggle with the day to day stuff – the sibling squabbles, the little ears that don’t seem to hear things like, “clean up the playroom” and “get dressed so we’re not late for school.” But really, I owe it to Leigh Ann and Dayna and Faith and all the other moms who would give anything to face a day filled with the everyday TRIVIAL struggles. So on this Mother’s Day, of all days, I promise to myself and to my boys that I will never, ever forget what matters most in this world. I will not forget that every day with them – even the tough days – is a precious day. I will not forget the feeling I have deep in my soul that comes with knowing that my boys and my family are truly the meaning of life. And I will never, ever forget how I came to learn these lessons. They have not come easy. But thank God they have come.

Happy Mother’s Day!
Love,
Kristin

*P.S. I still REALLY need help with the planning of the Sept 10 luncheon honoring mothers of children with cancer. I need some creative minds as well as people who are willing to help obtain sponsorships of the event itself as well as of our mothers who will be honored and to sell tickets. Please let me know if you are interested in helping. Thanks! It's going to be an incredibly special event!

Saturday, April 30, 2005 12:00 PM

Now that I've calmed down from the events of yesterday, I want to write more about what happened. My hope is that someone out there will learn from my experience.

I got an email earlier in Jan after the Good Housekeeping piece came out from a guy who said he was a writer for the Press Association, a news agency like the Associated Press that serves the UK and Austrailia. He said that he'd seen the Good HOusekeeping story and wanted to do a similar story for a similar publication in the UK and Austrailia. My brother in law is from England, so I have some familiarity with UK publications and I know that they can be tabloidish, so I did as much research as I could to check out the Press Association. They totally checked out as a reputable news agency. So I agreed to give the interview.

Yesterday, I got a frantic call from my good friend who took the photos for Good Housekeeping. She'd gotten a call from the photo desk of the National Enquirer saying they were running a story about Brandon next week and needed her pictures. To make a long story short, I finally found out that the reporter I spoke to was NOT actually working for the Press Association but indeed, is a writer for the National Enquirer. He boldly and blatantly lied to get the interview. By the end of the day, and lots of tears later, I had the National Enquirer's written commitment to pull the story.

I am so outraged, sad, disgusted that they would do that to get a story at all, but particularly about a child. I am relieved it will not run, but I will never again deal with a journalist in the same way, with any level of underlying trust.

Part of me does not want to be too discouraged by this experience because I know there are so many good, caring people out there who are honest and honorable. But it does give new meaning to me to the whole "bad apple" concept.

Love,
Kristin

Friday, April 29, 2005 3:45 pm
Dear friends:
Today has been a very disturbing, distressing day for me. I have removed all photos from this website because I learned that the National Enquirer is trying to get photos of us to run a story about Brandon in their magazine. The story is written in first person, as if I am telling it.

Needless to say, I am very upset about this. I know that when you give an interview, you are taking a leap of faith that the journalists are honorable, that they are who they say they are, that they will do what they say. I learned a hard lesson today that it just isn't so. It seems that some people will do anything for a dollar!

I have tried hard in telling our story to do so with only one purpose in mind. That is to raise awareness of childhood cancer and to help other kids with cancer, perhaps giving hope to other families who may need it. I have always been very forthright with journalists about this purpose. Up until today, I feel that they have honored this purpose. Today, I feel like my child has been exploited and we have been used. I feel responsible - I talked to the guy.

My heart is broken as I wonder why our world has to be like this. I am upset that I have put my family in a position where our story can be misused.

I wanted all of you to know why I took the pictures off the site. I also urge all of us to be careful about the info we post. There are a lot of caring, wonderful people who follow our journeys, but not everyone comes here for that purpose.
Love,
Kristin

Thursday, April 28,2005 11:05 pm

Whew! What a total whirlwind it’s been since my last update. The unexpected trip to Jefferson City turned our schedules upside down. Nevertheless, it was such a special time with Mike’s family. We don’t get to see them nearly often enough, so it was so nice to be together at such an important time. The boys did NOT want to leave, which tells us we need to make the visits more frequent…somehow.

We got back just in time for me to load a plane for Chicago for the CureSearch board meeting. What an incredible experience that was. It was my second board meeting, but in the fall, I was so new that I was just meeting people and didn’t really have a chance to talk in depth with anyone. This time was so different. I was just overwhelmed by the passion of those who dedicate their time to help CureSearch further its mission to cure childhood cancer. It was so inspiring for me. I talked for a long time with Dr. Denny Hammond, the founder of the National Childhood Cancer Foundation. This is a man who has dedicated his entire life to caring for children – trying to save their lives. He had the foresight years and years ago to push forward the collaborative process that unquestionably has led to advances in childhood cancer treatments and cures. He is 80 years old and still goes into the office – totally dedicated, totally inspiring. There are many others on the board, from business leaders to parents of children with cancer, some who lost their lives and others who have survived. There are also other doctors on the board. I had a really great talk with the head of the pediatric oncology program at a hospital in Ontario, Canada. I was remarking on how inspiring the doctors’ collective dedication is, and he said jokingly, “Would you please write a letter to my kids and tell them that? Would you tell them that what I do is important?” He was joking, but I was really struck by this conversation as we continued. He was talking about how he works long hours and travels and how his kids don’t have the same perspective as we, as parents have and don’t necessarily appreciate the work he does. I told him I’d love to write to them about what a hero their dad is, spending his days and nights saving the lives of children like my own. This whole exchange made me think about starting a letter writing campaign to our doctors and, more importantly, to their families, thanking them for sharing their husbands, wives, moms and dads with us as they work tirelessly to try to save the lives of our kids. I don’t know. It’s a thought. Anyone out there want to join me in this effort?

Now, 3 weeks later, the board meeting seems like a blur, like it occurred months ago. There’s so much going on and I really do have some things I could use help with. I’ll list those at the end of this update and you can contact me if you are interested in helping with any of them.

Sunday concluded the Tour de Georgia benefiting the Georgia Cancer Coalition. What an incredible experience that was. The Georgia Cancer Coalition included children with cancer in a really big, visible way. It should have, you might say. Well, yes, but I have found that with so many cancer related organizations and groups, the kids are hardly a focus, if at all. Often times, they are left out all together. So it was truly remarkable that the Georgia Cancer Coalition has opened its arms, so to speak, so widely to us as a group. We had so many incredible opportunities over the course of the week – first, to represent survivors of cancer at the Governor’s proclamation ceremony. Will Hennessy was a superstar in this role, and he presented Governor Perdue with a CureSearch “Reach the Day” wristband. The news covered this and also interviewed Will, who so eloquently explained that our bands mean that we want to reach the day that kids won’t have cancer anymore!!!

Sunday was by far the biggest day of the Tour. With over 150,000 spectators milling the streets of Alpharetta, we had a booth that was very visible. We gave our families and kids precious t-shirts that feature the artwork of a little girl who died from a brain tumor at age 11. She drew a skunk, and above her artwork, it says “Childhood Cancer Stinks”. I’ll get some pictures up soon! The t-shirts were so eye-catching – Will was able to give one to Governor Perdue, who autographed Will’s shirt and then asked Will to autograph his. We also gave a t-shirt to stage 6 winner Gord Fraser, friends of the Hennessys, who proudly put the shirt on and then autographed Ryan and Brandon’s shirts. It was awesome! Gord also wore his “Reach the Day” wristband. I do have lots of t-shirts left that are available for a $10 donation.

I received a very special phone call yesterday, from Sandy Blaisdell, Martin Blaisdell’s mom. Many of you follow Martin’s caringbridge site – www.caringbridge.org/ga/martinblaisdell. Sandy called to tell me that the James M. Cox Foundation voted to award a $100,000 grant to CureSearch. The significant investment by this foundation shows an extraordinary commitment to childhood cancer research, and I know that Sandy, Martin and the Blaisdell family inspire this commitment. Tomorrow, Martin will give the check to me. How wonderfully special that he will be the one to hand off that money. I only hope we can deliver back to this special child and amazing family hope for Martin’s cure through the research this money will fund.

It has definitely been a busy time for our family. The boys are doing great. Ryan lost another tooth this morning and wants to know “how the tooth fairy gets money” and “why the tooth fairy wants teeth”? Hmmmm???? He has taken such an interest in wildlife, and he quizzes me almost daily now. “Mommy, do you know if there are any mammals that don’t give birth to live babies?” Give up? The answer is yes there are – the plateapus (sp?) lays eggs. “Do you know how many types of owls there are? Actually, Mommy, I’d like to have an owl? Can I have an owl? Well if I can’t have an owl, how about an eagle? AHHHH, MAN! No eagle, either????!!!! Well then, I NEED a Husky!!!” WHAT?!?!?!?!?

Brandon continues to make me laugh hysterically one minute and then, the next minute, cause me to scratch my head and wonder what I’m doing wrong. He is, I suppose, a typical 3 year old little boy. I struggle sometimes with why he can’t understand that he can’t whack his brother in the face or throw his toys across the room or try to fly like Superman by jumping off the furniture. Yet, truly, in the midst of the struggles, I am mindful of all the families that would LOVE to be worrying about these kinds of things that are so trivial when you’re fighting to save your child’s life or grieving a lost child. I know I still have to deal with the issues (really, punching his brother is not acceptable!), but I do have perspective…most of the time.

I suppose I have gone on long enough for now. Check back soon for new pictures and take a look at the volunteer opportunities below.

Tonight, my heart is heavy with the struggles of so many families – particularly those who are fighting the fight of their lives and those who have lost. I am also really saddened by ALL of the new diagnosis – there have been SO many. Please keep all of these families in your prayers.

Thanks for continuing to check on us.

Love,
Kristin

THE LATEST VOLUNTEER OPPORTUNITIES:
* I am looking for people to help plan the September 10 luncheon I’m doing with Chris Glavine to honor mothers of children with cancer. I don’t want to give away too much here, and all you moms of kid with cancer out there, this is to honor you so you can’t help do the work. But I sure could use some other willing volunteers.
*I am looking for some help with health fairs Bellsouth has invited us to participate in. By May 13, I will have done 3, but I’m not sure how frequently they will arise. It would be great to have a few people I could call to help man the CureSearch table.
* I really DO want to do a letter writing campaign for the docs and nurses who care for our kids. Let me know if you want to help, either with organizing or writing.

Tuesday, April 5, 2005 10:47 AM CST

Hi, to everyone from Jefferson City, MO. Unfortunately, Mike's grandmother had a massive stroke and died on Sat., so we loaded in the car and drove here to be with his family. As sad as we are at the loss of his grandmother, it's great to be here with his family.

I received an email from my special friend, the ped. oncology nurse in Seattle, in response to my soapbox below. I wanted to share some of it since it's the GOOD NEWS:
____________________________
"Last Thursday, I read an article in Oncology Times that talks about all the drugs in the "pipeline" specifically aimed at pediatric cancers. The FDA is very interested in clinical trials aimed at getting more drugs/therapies available that target the needs of children. Top on the list were several drugs in trial aimed at leukemia and a couple of very exciting therapies for brain tumors. As I am sure you know, nearly all brain tumors carry with them a life expectancy of 1 year maximuim and many familes do not get even that. I was so excited and encouraged when I read this article I teared up. What irony that this post would collide with this great "pipeline" news.
________________________________

I post this because I think Mindi helps me make my point. It's CRAZY NOT to work as hard as we can not to get money in the hands of our docs to carry forward their research BECAUSE THEY ARE SO CLOSE! I think sometimes when we think of research, it seems like giving money in this direction is a bit like throwing money into a black hole. But the good news is that with pediatric cancer, that's just not so. Our doctors don't need the impossible. They aren't saying they need a gazillion dollars. It's so doable, if we work in a concerted fashion to fund them. The doctors researching for a cure have a scientific agenda - what they'll fund if they have the money - and it's really NOT A LOT of money that they need to advance this agenda - with those hard to treat, poor prognosis cancers at the front of the line. So to me, when I walk the halls of Scottish Rite and Egleston, it's a no brainer.

When I asked Mindi if I could post her words, she responded with more eloquent words that will help you understand the picture in a way I never could:
______________________________
"It is so importanat that people realize the process of how this all takes place. For exampe, on average, it takes $750 million dollars and 10 years for a drug to be discovered in the lab, taking through clinical trial - first in animal models, then in humans-, then to FDA approval. But we are trying so desperately. Elizabeth Glasier, founder of the Pediatric Aids Foundation, was instrumental oh so many years ago in making the need for trials aimed at children public knowledge. Again and again I will promise you we are close, though I know close is a relative term.

Recently I read of another wonderful Caringbridge star who competed her treatment for ALL. On her main page there is a picture of her taking her last dose of 6MP. As I shared with Ali and her mom, in late 1967 a young boy was fighting the last of his ALL battle. His parents signed him up for yet another clinical trial for a drug called 6MP. That sweet boy was my brother and he died Good Friday, April 12, 1968. So many of the drugs that were part of clinical trials for him and indeed my whole family, 6MP, Vincristine, Cytoxan, are now standard, curative therapies for ALL. My brother may have lost his battle, but the courage he showed, my parents showed in signing him up for those trials has saved the lives of thousands of children. In so many other ways we won!!! It's a beautiful thing!!!"
________________________________
Thanks, Mindi! God bless you for sharing with us and helping us to understand!

March 31, 2005
WARNING for those who might want to know – I am about to get on my soapbox! If you prefer not to read my ranting and raving, now’s your chance to click….Ok, having been duly warned, if anyone is still out there, read on and please let me know your thoughts afterwards. Here goes. I came across the following article yesterday running in the Chicago Tribune:
_____________________________________________
Childhood cancer risk weighed

Items compiled from Tribune news services
Published March 30, 2005
WASHINGTON, D.C. -- Children may be more vulnerable than adults to cancer risks from certain gene-damaging chemicals, the Environmental Protection Agency said Tuesday.

The agency has updated the way it decides which pollutants pose cancer risks, which is intended to lead to better and more accurate reviews of carcinogens that might be regulated.

Under the previous EPA guidelines, last revised in 1986, cancer risks to children were assumed to be no greater than to similarly exposed adults.

In the first such update in nearly 20 years, the EPA said children age 2 and younger might be 10 times more vulnerable than adults to certain chemicals.

Children age 2 to 16 might be three times more vulnerable to certain chemicals.
_______________________________________________________

Now, I know this is a really brief write up without a lot of detail, and I know I’m hypersensitive to stuff like this, but does anyone else out there SEE THE PICTURE that I see? Since the 1970s, the incidence of childhood cancer has risen consistently. I don’t really need any government agency to tell me this. All I have to do is walk around the 3rd floor at Scottish Rite, where every room is full, and tears are shed with the news of new diagnosis…constantly. Just the weekend before Easter, there were EIGHT new diagnosis. EIGHT in one weekend! Eight new children who are now in the fight of their lives. Eight new families (actually, many more since childhood cancer affects the broader community so profoundly) whose lives were just turned upside down. Eight new sets of parents who can’t sleep because of the fear that lives deep in their souls. At one children’s hospital. In ONE WEEKEND.

And now there’s a study that shows that our children are TEN TIMES more vulnerable than adults to cancer risks from certain chemicals. I’m guessing that there are MORE of these toxic chemicals out there that are impacting our kids than ever before -- hence, the ever increasing incidence rates of childhood cancer.

I’m not holding my breath that our legislators are going to do anything any time soon to protect our kids. So where does that leave us? It means it’s all up to us. We have GOT to take charge of this. We have to make the world hear us. If we don’t focus, and I mean SERIOUSLY focus, on funding the research that is going to SAVE OUR KIDS, where does it leave THEM? Exposed to chemicals, at increased risk of cancer, and without the hope that they could have if we would just invest in the research. It seems so obvious to me that I want to scream. If only someone would listen.

I also read yesterday a quote that says it all: “Children are one third of our population and all of our future.”

I feel so helpless sometimes.

Prayers for all our little buddies!
Love,
Kristin

Monday, March 14, 2005 9:42 AM CST

Well, we made it back from sunny (cold) Florida where we spent a great week “getting away from it all”. Ryan’s spring break was the perfect opportunity to head to one of my all time favorite places – Venice, Florida. I grew up going to Venice and, like it often goes, didn’t appreciate it fully until our annual summer stays gave way to summer jobs and endless activities. I have so many special memories of the summers spent there, including long days swimming in the ocean and swimming pool, scouring the beach for sharks’ teeth, watching people fish off the jetties, building sand castles. My friendship with Ryan’s godfather, one of my closest friends in the world, was formed down there as was my love of the beach. But most of all, I remember the special times I spent with my grandparents, who moved down there when I was just a child. We’d spend our summers at our condo down the street, and I spent many days with my grandparents, my grandfather teaching me all the tricks of shark tooth hunting, and my grandmother insisting that I just had to eat one more of her famous pancakes (or whatever she was cooking at the time, which was always something!). They were big game players, and we’d play cards for hours on end. They were wonderful days that I’ll always hold so close to my heart.

My wonderful grandparents still live in Venice, and we actually stayed in their condo right across from the beach. My grandparents moved a little more than a year ago to a nearby retirement community, and this was the first time that I’ve seen them there. My 88 year old grandmother amazes me with all she does. But my 89 year old grandfather is now in nursing care. It broke my heart to see him there. I wanted to take him away, take him to the beach, turn back the clock. But his body has aged, and he is tired. I can’t have him like that again. I am so thankful to have had such special time with them for so long. I wouldn’t trade one moment of it for anything in the world. But leaving them this time was so hard. I cried like a baby when it was time to go, wondering if I will see them again, and if so, what their physical and mental conditions will be. I am thankful for having the best grandparents anyone could have. I don’t want to let them go.

Ryan made us so proud once again as he handled the entire trip with maturity beyond his years. He is such a special kid. Nursing homes are not an easy place for children to go. Heck, they’re not an easy place for ANYONE to go. Yet Ryan didn’t seem to be bothered – not by the 95 year old woman screaming at him that he is a “pretty little girl”, not by the 93 year old asking him over and over and over again how old he was…not by the frailty or illness. He willingly accompanied me on most visits, and he sat patiently through my visits, showering my grandparents with hugs and smiles.

Brandon was much more typical in his reaction. He wanted nothing to do with the whole place. I can’t blame him – he IS only 3 after all, and he doesn’t have the memories of my grandparents that Ryan has. Mostly, Brandon spent that time with Mike on the beach, which was where he needed to be. Energetic, noisy 3 year olds and nursing homes just don’t mix.

It is clear that Brandon shares my love for the beach. He was HILARIOUS! He would run up and down the beach with the waves as they came in and out, SHOUTING at them at the top of his lungs. I can’t do it justice with words, but he was so excited with every aspect of the beach that he literally could not contain himself. I think he had just about everyone on Venice beach laughing hysterically. He had a ball and brought home as much of the beach as he could manage to fit in his bucket, which, by the looks of my car, was a pretty impressive amount!

We stopped in Tampa on Friday and spent the day at Busch Gardens. What a BLAST! We spent the night with family friends who share my family’s love of games. Ryan stayed up way too late learning the “right” way to play dominoes and promptly beating everyone who dared to play with him. The boys were so sad to load in the car on Saturday and head home. It was a GREAT trip.

For me, it was a much needed break from the daily routine. It was a needed break from the stress and discouragement I’ve been feeling and a good time to think about the toll that that stress has taken on me, and therefore, on my family and those around me. I am not proud to say that I’ve seen myself grow more irritable over the last months, I’ve had less patience with Mike and the boys, and I’ve just felt generally grumpy, as we say in our house. I never realized how important it can be just to get away – to new scenery – to get back on track. I had time to think about it all, to plan ways to cope better and to be more effective in my work. I don’t know that I’ll be able to follow through perfectly on my plans, but at least I can go into a new week feeling a renewed sense of peace.

One day while we were on our vacation, I turned the tv on and Oprah was there, doing a big baby shower for pregnant service women. It was a great show. Martina McBride came on and sang her song, “In my Daughter’s Eyes.” I had never heard it before, and tears just streamed down my face as I listened to the words, thinking of how Ryan, in particular, relates to me and how I know in my heart that I fall far short of his vision of me as his mother – especially lately. Here are the beautiful lyrics (of course, I substitute “sons” for “daughter” when I listen):

In my daughter's eyes I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I want to be
In my daughter's eyes

In my daughter's eyes
Everyone is equal
Darkness turns to light
And the world is at peace
This miracle God gave to me
Gives me strength when I'm weak
I find reason to believe
In my daughter's eyes

And when she wraps her hand around my finger
Oh it puts a smile in my heart
Everything becomes a little clearer
I realize what life is all about

It's hangin' on when your heart
Has had enough
It's givin' more when you feel like givin' up
I've seen the light
It's in my daughter's eyes

In my daughter's eyes
I can see the future
A reflection of who I am
And what we'll be
And though she'll grow and someday leave
Maybe raise a family
When I'm gone
I hope you'll see
How happy she made me
For I'll be there
In my daughter's eyes

Have a great week, everyone! Sending lots of love and prayers your way!
Love,
Kristin

Tuesday, March 1, 2005 2:00 PM CST

Thought y'all might enjoy reading this wonderful story about my sister and her twins that is appearing in today's Corning Leader. Our family continues to count our blessings:

Children's Miracle Network will feature local family
BY BOB RECOTTA

CORNING The birth of any baby can be considered a miracle. In the case of Kevyn Hennessey and her twin girls, Keira and Kayla, their births were truly one miracle after another.

Kayla and Keira were born several months prematurely and 17 days apart. Now, because of their harrowing, and at times heart-rending, ordeal the Children's Miracle Network has chosen the Hennesseys to be featured during the organization's broadcast this summer on WETM-TV.

"Because we are a regional center, we always look to families representing different areas," said Susan Reynolds, executive director of the Children's Miracle Network. "When I met Kevyn, I knew they would be the perfect family to represent the Children's Miracle Network. They are a wonderful family."

The day of Aug. 28, 2004 started like a normal day for Kevyn. Her husband, Jim, was in England and Kevyn decided to get some shopping done.

"I had gone to Sam's Club and I thought the babies were getting a little big," Kevyn said. "The babies were sitting on my bladder. I went to the rest rooms at Sam's Club and discovered my water had broken."

Because she had suffered several miscarriages in the past and the babies were only 26 weeks, Kevyn was concerned. She called her doctor, who told her to come to Arnot Ogden Medical Center right away.

"When I came out of the bathroom, a handful of Sam's Club employees were right there, ready to help," Kevyn said. "I insisted I was fine, but they drove me to the hospital."

Once at the hospital, doctors tried to stop the labor by giving Kevyn magnesium sulfate. They also gave her steroids, hoping they would help the babies' lungs to develop.

The babies had two separate amnionic sacks. One was still intact. The one that had broken still had a lot of fluid in it. Doctors took that as a good sign that maybe they could prevent the babies from being born.

Kayla Hennessey, however, had different ideas.

"I never had any contractions, although I had a lot of pain," Kevyn said. "They wheeled me into an OR delivery room, brought in a neo-natal group and an anaesthesiologist, and she was born three minutes later. I guess she was ready to come."

Kevyn, however, barely had time to enjoy her new daughter. After seeing her only briefly, a group of neo-natalogists began working on Kayla. Although her eyes were still fused together and she was on a ventilator, Kevyn said Kayla's condition was stable.

While Kayla continued to grow stronger, doctors were also monitoring Kevyn to see if Kayla's twin sister would be making an appearance any time soon.

Kevyn was in the hospital, confined to complete bed rest, for two weeks when one of the nurses who regularly attended her noticed there was something different about her.

"She called my doctor, unbeknownst to me, and told him something was not right," Kevyn said. "She said, 'I think you should come over and take a look.' When he came in, I was four centimeters dilated."

Unlike her brief labor for Kayla, Keira took her time being born. Kevyn went into the delivery room at noon on Sept. 13, 2004. Keira was born 13 hours later, on Sept. 14, 2004.

Kevyn said the staff at Arnot Ogden Medical Center made the days following her babies' births easier.

"I felt so well supported," Kevyn said. "The nurses on the maternity ward were amazing. It was a bumpy ride. They are amazing people who try to make it as special as they can."

Because of the care she received, Kevyn is glad she can now return the favor by helping the Children's Miracle Network in any way possible.

"I was very pleased to help," Kevyn said. "How do you begin to thank a group who has done that for you?"

tale of the tape

KAYLA HENNESSEY

Due date | Nov. 29, 2004

Birth date | Aug. 28, 2004

Birth weight | 1 pound, 14 ounces.

KEIRA HENNESSEY

Due date | Nov. 29, 2004

Birth date | Sept. 14, 2004

Birth weight | 2 pounds, 12 ounces.

Saturday, February 19, 2005 12:21 AM CST

This was definitely a week that ranks up there as one of my favorites. It all started on Monday, Valentines Day. After school, Ryan was showing me all his Valentines and treats from the day and I asked, “So Ryan, who is your Valentine?” He just looked at me with that “I can’t believe your asking me that question” look. No answer. So I started naming off the girls in his class – “Is it Emma?” “NO!” “Lauren?” “No way, Mommy!”, “Ok, then how about Anna? Carter? Mrs. Igleheart???” “MOM!” “Well, then Ryan, WHO is your Valentine?” A shy grin crept over his face, “You are, Mommy.” Melt my heart.

Wednesday brought some kind of stomach bug my way. Once Mike got home, I collapsed on the couch. Brandon and Ryan totally went into “take care of Mommy” mode. Brandon ran back and forth from the kitchen table to the couch, putting his face in mine, asking, “Do you need anything Mommy?” “NOW do you need anything?” “Mommy, do you need anything YET?” Finally, I said, “I just need lots of hugs Brandon”. So he gave me a giant hug and then ran into the kitchen screaming, “GUYS! MOMMY NEEDS HUGS! SHE NEEDS HUGS!” Even with a stomach bug, I could not contain the laughter.

Today, the boys have been making pictures. I was sent from the room so they could “create” in private. A few minutes later, Brandon ran to me and declared with all his might, “Mommy! I made a picture for YOU! It’s all for YOU! Not for Ryan. Not for Daddy! And it’s NOT for Windsor or Scarlett (our dogs). It’s for YOU Mommy!!!”

What have I done to deserve this?! I am the luckiest Mommy in the whole world!

Lots and lots of prayers for all our little buddies!
Love,
Kristin

Monday, February 14, 2005 1:43 PM CST

After reading my last post, you guys must think I’ve gone off the deep end. I realized that while I know what I was trying to say, there’s no way you could have, given all the vagaries. I mean, the goose thing really doesn’t need my commentary to mess up the perfect message it offers. But since I went there, I might as well try to get it right.

Really, when I read the Lessons Of The Geese, I was immediately thinking of a few specific happenings. One was the scare with Chandler Booth. I was thinking about how one day, Kim was writing about being so busy with all the normal stuff going on in their lives, offering her support to others as she always does. And then – BOOM! Just like that, the shoe had dropped and their family was the one in crisis needing support. It just struck me when I read the passage how this goes, and how everyone in our “community” really does drop everything and run to the aid of the ones in need. Whether it’s Kylie’s surgery, William’s unexpected hospital admission, or Jacob and Zack’s weeks on steroids…people just come forward constantly to offer help and support. Of course, I prefer to be in the role of giving help rather than needing help, but I do know that if it was our shoes that dropped, many of you would be right there to pick up the pieces. It’s a pretty awesome feeling to live in that knowledge.

The other scenario that ran through my mind was the way that Robin Pitts and Melinda Mayton (Lighthouse Family Retreat) continue to be the “geese” who nurse me back to health when I am most in need. Five months into my leave of absence from lawyering, which I thought was a pretty tough profession, I have learned that there are many HARDER professions, and for very different reasons, this just may be one of them. Melinda and Robin have related so perfectly to me and have counseled me so much. Without their care, I think I would still be lying on the road a very wounded goose, not sure how to get up. But they've picked up my wings and sent me forward, all the better prepared for the next "thing". I am so grateful to them.

We had a GREAT weekend with some of our good buddies. This weekend, Kendrie and the rest of the Escoe clan came in town to visit and go to the Camp Sunshine circus day with us. What a GREAT time we had with them! All of you who read Kendrie’s site know that Kristie is probably the funniest human being alive (Jeff Foxworthy has nothing on you, Kristie!), so we were all in good humor all weekend. We got to celebrate Brayden’s eighth birthday with them, and Ryan is absolutely counting down the days until he reunites with his BEST friend, Kellan!!! I think Brandon and Kendrie were 2 peas in a pod. They all had the best time.

Camp Jack came over Saturday evening to hang out with us. It was so great to finally meet face to face after all this time of following websites and writing. Brandon, unfortunately, is sporting a horrible cough, so he was not himself. But still, the kids had a great time, especially feeding the GEESE (for real!) and it was so awesome to be able to sit and talk (and talk and talk and talk and talk – you get the picture) with Jen and Kristie.

Sunday was a big day at the circus with Camp Sunshine. I didn’t know before Sunday that Big Apple Circus is a non-profit organization. What a great performance and incredible day for us to be there, front row, among so many of our dearest friends. Brandon, still plagued by his cough, was just miserable and finally fell asleep in Mike’s arms about half way through, but Ryan was absolutely belly laughing the entire time. It was truly a priceless day!

I continue to get inquiries about the “REACH THE DAY” wristbands. I still have a good supply, so just let me know if you need some!

Prayers for all our little buddies!
Love,
Kristin
p.s. I promise to get some new pics up once I figure out how to use our new digital camera...I am SO pathetic!

Saturday, February 5, 2005 1:18 PM CST

LESSONS OF THE GEESE

In the Fall, when you see geese heading south for the winter flying along in the “V” formation, you might be interested in knowing what science has discovered about why they fly that way.

It has been learned that as each bird flaps its wings, it creates uplift for the bird immediately following. By flying in a “V” formation, the whole flock adds at least 71reater flying range than if each bird flew on its own.

Quite similar to people who are part of a team and share a common direction get where they are going quicker and easier, because they are traveling on the trust of one another and lift each other up along the way.

Whenever a goose falls out of formation, it suddenly feels the drag and resistance of trying to go through it alone and quickly gets back into formation to take advantage of the power of the flock

If we have as much sense as a goose, we will stay in formation and share information with those who are headed in the same way that we are going.

When the lead goose gets tired, she rotates back in the wings and another goose takes over. It pays to share leadership and take turns doing hard jobs.

The geese honk from behind to encourage those up front to keep their speed. Words of support and inspiration help energize those on the front line, helping them to keep pace in spite of the day-to-day pressures and fatigue.

It is important that our honking be encouraging. Otherwise, it’s just…well…honking.

Finally, when a goose gets sick or is wounded, and falls out, two geese fall out of the formation and follow the injured one down to help and protect him. They stay with him until he is either able to fly or until he is dead, then they launch out with another formation to catch up with their group.

When one of us is down, it’s up to the others to stand by us in our time of trouble. If we have the sense of a goose, we will stand by each other when things get rough. We will stay in formation with those headed where we want to go.

(Author unknown)
…..

I never knew there was so much to be learned from geese. I haven’t been able to stop thinking about all the applications of this passage to our lives since I read it. Admittedly, my first thoughts were of how this applies to me, the times when I’ve tried to stay in formation, sharing vision and following the direction of the team, and the times when I’ve been called to be the “lead goose”. All of us have been in both of these roles many times in our lives, I’m sure. There have been times when I've tried help and protect fallen geese. And there have been times when I've been the fallen goose. I’m sure I’m not alone in feeling sometimes wounded and discouraged by those who can’t see beyond the peskiness of the honking geese. When I read this, I felt this almost physical sense of gratefulness to all the “fellow geese” who have broken formation to nurse my wounds, pull me back into the formation, and even push me to lead. There are those who have stepped forward to “share leadership and take turns doing the hard jobs.” Thank goodness for them!

I think it must be like that for all of us. Isn’t this really what it’s all about anyway? To encourage each other, to help others through the times that they are the wounded goose? I see this every day with our families of children with cancer. This spirit lives so pervasively among us. When one is down and out, another rises to the challenge, giving all they have to support the wounded. And maybe the goose giving the support is wounded too, but still, she gives so freely because she’s part of the team.

I got some of that encouraging “honking” last weekend…you know, the kind that touches your soul. It came from a woman I’ve never met – a nurse in Seattle who somehow found her way to our website. The “re” line in my inbox said, Making a Difference. I didn’t recognize the name of the sender, so I opened it curiously. It said:

Dear Kristin,

My name is Mindi Chouinard and I am a pediatric stem cell transplant nurse/educator at the Fred Hutchinson Cancer Research Center. I follow many Caringbridge sites, all starting from my own kids here in Seattle. I have come to know and love many of the children you spoke of today in your beautiful and passionate entry. I have been following your beautiful little guy's journey for a long time now and have always been so very impressed with your turning anguish to action. Your efforts toward pediatric cancer research are astonishing. It is a tragedy to me that of the Americans, adult and children, with a cancer diagnosis, less than 3 percent are enrolled on clinical trials. Clinical trials are what achieve cures or more to the point MIRACLES and research is essential to that end!!!

So I want to thank you, as a kids cancer nurse who has seen endless suffering, for speaking so well to the mission we all must be on. For carrying the banner high, lifting spirits, speaking the hard truth. I understand your feelings of powerlessness, helplessness. I just hope that words from a nurse who has been at it a long time will help ease these feelings and assure you that each and every word you have shared has made a difference in your son's life and the lives of countless other children. In 15 years I have seen so many positive changes, so many miracles. I believe with all my heart cancer will not win. Children will win. And it will be one of those special children who will lead the way to lifelong cure.

God bless you in your efforts. God be with your beautiful family. May His healing arms wrap your Brandon in safety for his very long life.

In friendship,
Mindi

I don’t know what caused Mindi to write, but I’m glad she did. Her words did, indeed, energize me at a time I was feeling overwhelmed with sadness by the struggles of our children. Mindi reminded me to keep my head down, my focus on the task at hand because the mission is too important. Mindi also reminded me of how I should relate to others. She showed me that no matter what I am doing, I have to always stop to take time to encourage those who travel in the same direction. You never know when those words are just what’s needed to energize and propel someone forward on their journey.

Mindi said that “Children will win.” I believe that with all my heart or I wouldn’t be doing what I am. It would be pointless. But it isn’t. And I see that more and more with every week that passes.

I am dying to share the details of something Chris Glavine and I are working on…It’s a tribute luncheon to honor mothers of children with cancer, recognizing the unique burden that only these mothers (many of YOU!) carry on their shoulders. I’m not intending to short change all you dads out there. You are incredible and your burdens are heavy, too, and one day, we will honor those appropriately. For today, my focus is on the moms. I don’t know what this will look like in the end, but no matter what, I am seeing the awesome power of mothers’ stories and the strength of mothers’ love – for their children, for other children, for other mothers. I think we don’t always see it or recognize how much good we can do because of it. But I’m reminded by all that is happening around me (sorry, I’ll share details as soon as I can) that if can find a positive way to act on that, we can accomplish a lot, change a lot. It’s not always easy. But it happens every day, in communities all over the world…even in our own.

Our prayers remain with all our little buddies.
Love,
Kristin

Saturday, January 29, 2005 2:13 PM CST

So many times now over the course of the last 3 years, I have faced this journal with anguish in my heart because another child who is close to our hearts has suffered at the hands of this wretched disease we call childhood cancer. Those of you who read these updates must get as weary reading my words as I do writing them. Yet to stop writing them would be, in my mind, to turn my back on the truth – on what this disease does to children and the families who love them, and on the ability we all have to change the course for them, one tiny step at a time.

Every time there’s a new development, I think, “No!! It can’t be! Not THIS child! Not THIS family!” This time is no different. Yesterday afternoon, the boys and I ran in the door to get out of the falling sleet and cold only to hear a familiar voice talking to our answering machine. As I ran to turn the alarm off, I heard the words “spots on his lungs” and “MIBG” and I grabbed the phone. “Kim! What is it? WHAT?” It was my sweet friend Kim Booth, Chandler’s mom , calling to tell me about the results of Chandler’s “routine” CT. The CT showed new “spots” on his lungs that have never been there before. The doctors fear it is the return of neuroblastoma. “No! No! NO!” I told her. It can’t be. I won’t believe it. I refuse to believe it until a biopsy says it’s so. “I know what it means if it is neuroblastoma”, Kim said – it becomes about buying more time. She writes on Chandler’s website:

”Right now, if it is neuroblastoma, then the first line of defense is to give Chandler (and us) more time. More time to play with Thomas the Train and read books and sing the ABC Song that is always followed by "You better watch out, you better not cry, etc." More time to maybe go see Mickey in Orlando.... just more time that isn't in a damn hospital!!!!!!! I think anyone can understand what I mean.”

Oh yes, Kim, we understand what you mean. She also writes, “Second best case scenerio...Chandler gets a port, not a central line again and the chemo doesn't make him so sick that he wishes he was dead. We get to do a lot more things as a family. They come up with some other "miracle breakthrough" while he's still alive and it works. I'm not holding my breath for that unless we pump some money to the scientists for research.”

Kim, my friend, there’s nothing I can do for you except help in this way – sending as much money as I can find to the researchers. My tears mean nothing to you. You are in the fight of your life and I HATE how powerless I feel. But, I hear you. I FEEL your words. How can ANYONE read them and not “get it”?!

I don’t know what to do or say. This isn’t about me. It isn’t about one organization or another. It isn’t about agendas or politics, egos or personalities. You guys, it IS about Chandler Booth, and to me, it is about KIM BOOTH! It is about Martin Blaisdell. It is about Catie Wilkins. It is about William, and Jack, and Kylie, and Kendrie and Will and McKenzie and Mary Grace and Zack and Brady and Jake and Tyler and Ali and Ryan, and Brady - you get the picture…there are so many. It’s also about Carter, and Hayley and Shelby and Killian. It's about all of them. I'm not listing them all by name. I couldn't possibly, even all the children we know personally. But you know I mean them, too. How can we not help them?????

I really, really hate cancer – especially when it strikes children.

Love,
Kristin

Monday, January 17, 2005 4:07 PM EST

“The 7th caller through wins a Family Four Pack to see Beauty and the Beast at the Fox Theater Sunday evening.”

Now, I don’t know what in the world possessed me to pick up the phone and call the radio station when I heard this announcement since I haven’t called on a contest since I was in high school (a LONG time ago!) – but I did. And I WON the tickets. Thanks to 104.7 the Fish, we had an awesome time last night at the show. Our seats were great, and the show was phenomenal. If he hadn’t been scared of the Beast, I think Brandon would’ve been mesmerized by Belle. Ryan played it cool, but I could see the “twinkle” in his eyes! It was so much fun to see all the little girls wearing their “Belle gowns”. We don’t get to do the princess thing at our house, so it’s always a special treat for me to see the little girls pretending to be princesses!

We had a whirlwind of a week last week. The boys recovered from their viruses and had a good week, but I unfortunately got strep. But it was one of those weeks when it was impossible to just stay home in bed to get over it. Two of my favorite people from CureSearch were in town to work on the national launch of Coaching for the Cure (name change is coming…soon to be called Coaches Curing Kids Cancer!). Grainne has done such an incredible job with this program, and when launched nationally, it will raise millions of dollars for research. She is such an inspiration to me, and it is truly and honor to work with her on this program. There was also the trip to MLB in NY to prepare for. So it was a TOUGH week for me. But we made it through, and now it looks like Brandon is sick again. What is it about wintertime?! From my reading on other websites, I can see that we are not alone. There’s obviously a lot of stuff going around!

Speaking of the MLB trip to NY, I am happy to report that it went very well. As I have reflected on it, I think the thing that leaves the biggest impression on me is MLB’s obvious commitment to childhood cancer in general, and to CureSearch in particular. I had no idea the lengths to which all those at MLB went to pull off last summer’s Commissioner’s Initiative for Kids in such a short time frame nor the depth of the planning that’s already taken place for this year’s program. It’s just awesome, and I am so humbled by their support since they clearly have the ability to put childhood cancer “front and center” and to open doors that otherwise might not open. The execs. we met with are clearly interested in the new concept Dean presented, and time will tell what they decide to do with it. I am hopeful for this particular program. At the same time, I am excited that MLB is going to go forward with the Commissioner’s Initiative for Kids again this August. Watch for details as we head into the summer.

I have been overwhelmed (in a GOOD way) by requests for the green CureSearch wristbands. They say “REACH THE DAY” and symbolize the dream to reach the day when every child with cancer can be guaranteed a cure. They are $1 each, and if you would like 1 (or more), just email me at kristin.connor@comcast.net and I can make arrangements to get them to you.

There is so much happening, and I just want all of you who are touched by childhood cancer to know the kind of outreach that I am seeing. The last few weeks have been a perfect example of what I continue to see in terms of people who want to help our kids. A little over a week ago, I got a call completely out of the blue from a retired Presbyterian minister who lost his 13 year old son to leukemia in 1968. He had seen the editorial I wrote that was published in the AJC, and he called to tell me that he has written a book entitled “Getting Beyond Tragedy” that is being published and will come out around Easter. He has decided to donate his royalties to CureSearch. I am just so moved by this. This gentleman sent me the forward of his book, and I can’t wait to read it as the forward just grabbed me. The first part of the book is titled “Carvings from a Healing Heart” and is Dr. Noble’s (the author) poetic expression of his feelings, thoughts and experiences as he faced the reality of the tragedy of his son’s suffering and death. He writes, “To emerge in the sunlight on the other side of tragedy is an aim and goal worth striving for. It is not easy, but it is possible.”

The second part is a theological reflection on “Tragedy and the Will of God.” Dr. Noble explained to me that this part of the book comes after almost 50 years of being with people who have experienced many forms of tragedy – including his own family. It also emerges from a life long study of the Bible and reflections on the meaning of the Christian faith. He writes that he “rejects the glib and easy assignment of the will of God to tragedies that occur.” He writes that this reflection “gives what may be a fresh and new expression of a different way to experience faith in God in the midst of tragedy. Hopefully it will help many who experience tragedy to find their way into the sunlight of God’s love and care and to a fulfilling life after tragedy, even if the mark of the tragedy remains.”

The third part of the book contains reflections from his two other children from their experiences as teenagers as they witnessed the suffering and death of their brother and how their lives were and still are impacted. I am so anxious to read the entire manuscript of this book as Dr. Noble has touched on all the issues that just grip me as I think of our friends who have lost children. I know I am not alone when I say that I have not been able to reconcile the suffering of children spiritually – I mean, it cannot be explained, and I cannot understand the reasons. Perhaps it’s true that we are not meant to understand, but I anxiously await this book and this kind and generous person’s thoughts and perspectives. It really makes me stop in my tracks to think that he writes this book so many years after his son’s death and gives me a new perspective on the depths of suffering. Anyway, I am so moved that he has decided to donate his royalties to CureSearch. What an incredible gesture.

I have also gotten calls from people who are in the midst of planning their own charitable events and who, after reading the editorial, have decided to donate the proceeds to CureSearch. It takes my breath away, and there are no words to express my gratefulness for the kindness of strangers.

Our hearts are with the Barrys today as Kylie is in the midst of a very long and complicated surgery. Dr. Laquaglia, her surgeon, is a “legend” in the world of neuroblastoma families – he’s truly thought to be the best of the best. So we are comforted to know that Kylie is in such skilled hands. But our hearts are heavy for what we know Drew and Racquel are enduring today, and for what lies before them with her recovery. Please keep them in your prayers.

Our hearts are also with the Owen family as Killian would’ve turned 11 yesterday. We spent Saturday evening with them and the Hennessys, trying to just help them through an unimaginably difficult time, yet also trying to help Garrett, Killian’s twin, have some fun. We went bowling and learned that Jane Hennessy has been holding out on us all these years – she’s a SUPER bowler, leaving the rest of us “in the dust” (me, particulary far behind). We did have lots of laughs, but still, we know it was only a moment of joy in a time of deep pain for our special friends. So we ask for prayers for the Owens, and we ask for special prayers for Garrett. I can only imagine how hard birthdays must be for him.

Of course, our prayers are with all of our special friends, all of whom are at different places in their journeys. We love all of you and carry you with us in our hearts wherever we go.

Love,
Kristin

Monday, January 10, 2005 10:17 AM CST

After some really great time with the boys over the holidays, I just dreaded getting back to our daily routine. For one, I’ve just never had so much time over the holidays to really enjoy the boys like this. My leave of absence has not only allowed me to do work that I feel passionately about, but it’s also allowed me to have more time with Ryan and Brandon day in and day out. So while I heard rumblings of relief among many moms about sending the restless kids back to school, I really was sad to see the holidays come to an end.

But the other reason for my regret was the inevitable onset of the “cruds” – You know, the stomach bugs, the colds, the inevitable viruses that emerge in the wintertime (it is winter, isn't it??). Nothing serious but not so much fun either. Whew, what a week it was in our house. Ryan missed his first day back at school and then kindly shared his virus with Brandon, who ended up with croup before all was said and done. I have a completely renewed appreciation for those whose kids regularly take steroids as part of their treatment. Brandon has been on steroids for his croup and I really think his evil twin has emerged. This weekend, he vacillated between, “Mommy, I need you to sit with me and give me love” to “Get away from me Mommy! I don’t like you!” His sweet little voice has been replaced with a piercing whine, and the tears have come with the wrong look, the wrong word, the wrong book, the wrong DVD - you get the picture.

But, of course, I know that this will pass, and so I can’t complain. Actually, I struggle so much with just maintaining this website - I never know what to write about anymore. I feel guilt in reporting the things that to so many are trivial - like viruses and croup. I was struck by the words of Merrill King's parents as they reflected on the passing of little Hayley. They wrote:

"Hayley's passing is way too close to home. It's caused us to actually try to back away from our "cancer world" but in the end we can't. It's interesting with cancer, in one way I want to celebrate Merrill's recovery, then I'm worried that it's way to premature for that (still 20hance of relapse), then I feel guilty because of our other "cancer" children are still fighting, then I want to lobby the world for children's cancer research, then I just want out of the whole damn thing and act like it didn't happen. So, the balance of embracing it, pushing it away and then coming back to it is an on-going struggle for all of us."

And then:

"At the height of Merrill's struggle to survive, we knew it was God's choice to take her at any moment. How do we take full advantage of this gift of her life? Why was she spared, while hundreds of thousands get swept away at a single moment? We have a lot of emotion this month. Some of our caring friends call it survivor guilt, some call it post-stress-syndrome. We alternate between astonishment, to relief, to grief, to anger, to joy at the dumbest things.... I guess our gift for now is just to feel things intensely. We don't have it all sorted out yet."

These are feelings with which I struggle every single day. Some days I want to run so far and fast from all of it as the emotional burden is so great. There's so much pain and grief, and the intensity of the guilt is so tremendous for me. But something always seems to bring me back. I just can't let it go...

And so I don't. I read the words on many on the caringbridge sites with total admiration and respect. There are so many out there who maintain what I think must be a healthier outlook and balance. I hope that I can learn from others how to celebrate the blessings in and of our lives without feeling the guilt.

This will be a busy week as I head to New York to visit the higher ups at Major League Baseball with Dean Crowe and another gentlemen to discuss with them the awesome program Dean is leading that would truly provide a way for the grassroots community nationwide to organize and mobilize in support of children with cancer. Keep us in your prayers as this meeting is so important. If MLB gets behind this, it will be huge. But like Dean says, it will be huge anyway. Details to come later…

Love to and prayers for all of our friends who continue to fight – for the health of their little warriors, for the healing of their hearts, for the strength to face another day. We love you!
Kristin

Monday, January 3, 2005 9:43 AM CST

Today's AJC is running an editorial I wrote about childhood cancer. The AJC did make 2 edits I wasn't aware of - one is about St. Jude's ad campaign and the other is the quote of survival rates. I don't quote survival rates b/c I don't believe they reflect the true struggles of our families. That being said, here's what is running on page A9:

Money steps up fight vs. childhood cancer

By KRISTIN CONNOR
Published on: 01/03/05
Somehow, as busy families at Providence Christian Academy in Gwinnett County and throughout the surrounding community prepared for the holidays, they found time to come together on a cold Friday night to honor and remember a little boy who touched more lives in his seven short years than most of us touch in a lifetime.

Carter Martin died on Sept. 12, having lost his battle with a form of bone cancer called Ewing sarcoma. Those who knew and loved Carter, and those who didn't know him but who were heartstruck by the impact of this little boy's struggles on all who did, refuse to let his memory die or his death be in vain. So on Dec. 10, a caring community turned their grief into action, raising nearly $50,000 for childhood cancer research in one night.

This is how it is with childhood cancer. Once you know and love a child who has it, you can't let it go. For those who knew or knew of the nearly 3,000 children who died last year alone at the hands of the disease, their hearts will never be quite the same.

Thousands more have survived the disease's wrath, but at great cost — limb amputations, rounds and rounds of toxic chemotherapy, indescribable and constant pain, and most importantly, the loss of childhood joys and innocence. These children learn all too tragically that even the powerful love of their parents and a strong faith in God does not keep them safe from the wrath of cancer.

Because childhood cancer is relatively rare, particularly compared to the incidence of cancer in adults, many people have no idea of the devastating impact cancer has on a child, his or her parents, brothers, sisters, grandparents, friends and the larger community — like Carter Martin's entire school. Many people have no idea of the dire shortage of funding dedicated to research for cures for childhood cancer, no matter that cancer takes the lives of more young people under the age of 20 than any other disease.

But this level of awareness is changing, and not a day too soon. Through Web sites maintained by parents of children with cancer and through the bravery of children like Carter and the thousands of others like him, the world is becoming aware. The hearts of our nation were captured by 8-year-old Alex Scott in 2004 as we learned of her efforts to raise money for a cure through a lemonade stand. Alex's lemonade stand raised more than $1.5 million last year.

Curing Kids Cancer!, a new program of CureSearch National Childhood Cancer Foundation, will raise millions of dollars for pediatric cancer research in children's hospitals nationwide. This program began right here in Atlanta, inspired by Killian Owen, who lost his battle with leukemia last year at only 9 years old. Determined to spare others the same fate as Killian suffered, Killian's mother, Grainne, has become a tireless advocate and leader in fund-raising efforts.

Even professional athletes are rallying behind our children. Tom and Chris Glavine have become champions of the cause, persuading Major League Baseball to raise money for research through the Commissioner's Initiative for Kids. Right before Christmas, Major League Baseball delivered a check to CureSearch for nearly $725,000. With the hope that this money brings, I cannot think of a better holiday gift for children with cancer.

The promise of this local and national support for childhood cancer is unmistakable. St. Jude's Children Hospital in Memphis has launched a national advertising campaign to raise money and to bring awareness to the need for more research into childhood cancer.

We know concerted research efforts work. The fight to defeat cancer has witnessed amazing success just in my lifetime, as survival rates for childhood leukemia have gone from about 10 percent to nearly 85 percent. Success rates for other childhood cancers have improved, too. The dramatic growth in survival rates for some cancers has occurred only because of targeted research dollars. We know this approach works.

But we must do more — much more. Many childhood cancers are so rare that funding for them is limited. The reality for too many children and their families and friends is that cancer kills.

Yet doctors tell us that a cure for childhood cancer can be found in our lifetime with the proper funding. We in Atlanta are determined to deliver the funding to these doctors so that they can deliver a cure to our children. Please help us fulfill the promise of a cure as we move into a new year.

• Kristin Connor, a lawyer, has taken a leave of absence from her legal career to work with the National Childhood Cancer Foundation.

Wednesday, December 29, 2004 3:35 PM CST

A CHRISTMAS LETTER:

Dear friends and family:

We hope the holidays find you well and enjoying special times with family and friends. We are definitely celebrating the holiday “season” this year, enjoying lights, decorations and lots of fun activities. We have so much to be thankful for this year, and we reflect on that with grateful hearts. And while the holidays are a special time to focus on the blessings in our lives, we also remember with longing in our hearts all that has been lost this year.

First, the boys! The boys are both doing wonderfully and, as you all know, richen our lives beyond words. Ryan, 6, continues to thrive at school and exhibit a gentle spirit that touches those around him. He is such a kind and compassionate child, and we are so proud of him. He’s still enjoying soccer – I think we have a goalie in him – and he’s taking karate and golf lessons at school. But Ryan definitely loves to have play time at home, so we resist the urge to over schedule him.

Brandon, 3, is full of life. I’m not sure that his personality can be captured in words. Mike and I are sure that we have a “comedian in training” in Brandon – he is just the funniest child, with boundless energy that definitely exceeds our own. Most importantly, Brandon’s health has remained good, and his one year scans showed that his cancer is no where to be found. Thank you, God! We hope and pray that he will remain cancer free forever more.

Mike has had a busy year at work with the development and roll out of the court’s electronic filing program. He has been busy presenting the program to and training lawyers around the city and their staff. He trained my law firm, and I was so proud of his work. Outside of work, Mike has stayed so busy doing all that I commit us to doing, from fun runs to lemonade stands, and the list goes on.

As for me, I can say that last year when I wrote our Christmas letter, I never would have believed that the year would bring such change in my life. Following Brandon’s miraculous reprieve from cancer last year, I became very active in trying to raise money for researchers to find a cure for childhood cancer. I was stunned to learn that, although cancer kills more children than any other disease, very little money is devoted to research for cures. The more I learned, the more involved I got in trying to do something to change this. In May, with the help of dear friends, Jane and Phil Hennessy, I enlisted the help of former Braves’ pitcher Tom Glavine. He and his wife have become so impassioned to help, and Tom was instrumental in getting Major League Baseball to embrace childhood cancer through the Commissioner’s Initiative for Kids. All 30 major league clubs participated in the initiative late this summer, and as a result, over a half million dollars was donated to CureSearch National Childhood Cancer Foundation for research.

The Glavines and MLB invited us to NY in August for the launch of the initiative. While the boys thought riding in the limos was the coolest thing, for me, sitting in the press room at Shea Stadium among MLB staff, Commissioner Bud Selig and national media, listening to Tom Glavine talk about the devastating impact of childhood cancer was one of the proudest moments of my life. Tom and his wife are such dedicated spokespeople, and I have never felt more grateful to anyone than I do to them. Together, we are going to make a difference in this fight.

In September, with the support of my generous law firm, I took a leave of absence from the practice of law to devote all of my time and energies to the fight against childhood cancer. The work had become all consuming, and I simply could not juggle the demands of the charitable work and my law practice any longer. So during my time of leave, I am working with CureSearch National Childhood Cancer Foundation as its Director of Business and Community Development.

The need for research dollars to find a cure for childhood cancer took on new meaning to me this year as we helplessly watched the lives of children close to our hearts lose their battles. We do not go a day without thinking of these children and their families with longing in our hearts. I have a new perspective on holidays now – recognizing that among the joyful celebrations, there is such excruciating pain for so many people. Our thoughts and prayers are with all of you who experience this pain.

We do not know what 2005 will bring, but we will remain open and willing to do the work we are called to do. We will cherish the days with our children, families and friends like never before. We hope you will do the same.

May 2005 bring peace, health and happiness to all of you.

Love,
Kristin, Mike, Ryan and Brandon

HAPPY NEW YEAR TO ALL OUR FRIENDS!

Monday, December 20, 2004 4:25 PM CST

We weep with the Thomsons as precious Hayley lost her battle last night. We are saddened beyond words that this vicious disease has taken her from our presence. Please keep Dayna and Alan, and all who loved Hayley, in your thoughts and prayers. I cannot imagine the depths of their grief.

Love,
Kristin

Wednesday, December 15, 2004 11:13 PM CST

I had a "proud mom" moment today that I just have to share:

Driving home this afternoon, we came to a traffic light near our house. While we waited for the light to turn green, Ryan noticed a flyer posted with a picture of a dog on it.

"Mommy, why is there a picture of a dog on that sign?" he asked.

"That dog is lost, and the people who own him miss him and want all of us to help them find him," I answered.

"Well, what does '$200 reward' mean?" Ryan continued.

"It means that they miss their dog so much that they will pay the person who finds him and brings him home $200 for helping."

Silence in the back seat (a rare moment, indeed!).

Ryan said, "Well, Mommy. If we find their dog, I will tell them that we don't need the $200. We just wanted to help get their dog back home."

Out of the mouth of babes. Today, my 6 year old reminded me exactly what Christmas is all about.

Love to all of our precious friends and family this holiday season and always!
Kristin

*p.s. the Jan. Good Housekeeping is out, and our story appears on pages 146-149. Check out Amy Green's BEAUTFIUL pictures! Thank you, Amy!! I almost choked when I saw on the magazine's binder "over 25 million readers each month". 25 MILLION?!?!? If only half of those 25 million would be inspired to help us fight this disease...

Friday, December 10, 2004
I know I have not updated in a long time. There is nothing going on in our lives that is more important than the news of clear scans, so it seems appropriate that that news be left up for so long.

But there are other reasons for the lack of updates. First, my heart just hurts so much with the struggles of other families. I sit at the computer thinking about an update and just cannot bring myself to talk about the little things that we are doing in the face of the struggles of the Thompsons (Hayley), the Martins (Carter), or the Prescotts (Shelby). The day to day of our lives seems so insignificant in the face of the almost unthinkable struggles of these precious families – and way too many others. So for those who have checked in on us, I’m sorry. It’s just been too hard for me to write.

There is another reason it has been so hard for me to write here, and some of you know it. I will not say much –only that it seems that there are some people who are not so interested in seeing childhood cancer cured but are more interested in agendas and politics. I will only say that it has been so hard for me to see this in the way I have and to swallow it. Those who visit our website for purposes other than to offer support and friendship inhibit my ability or desire to share.

All that aside, I want to wish all of you a wonderful holiday. Reading William Olson’s website this morning, I was struck by what Nancy said: “Research, research, research.....we need cures for Christmas. What gifts under the tree those would be!” I’d give up each and every material gift for the rest of my days in exchange for THE cure!

We heard today that subscribers of Good Housekeeping magazine have received their January editions, and the story about our family is running. We have not been permitted to read it, so we are hoping for the best.

Also, Grainne Owen and I taped a segment for WSB’s “People to People” show with Jocelyn Dorsey this morning. It will air Sunday morning at 6:30, for you early risers!

Our hearts and prayers are with so many of you this Christmas. We love you!
Kristin

Sunday, October 31, 2004 12:26 AM CDT

No drama, no chaos, no confusion - a first for us. Just clean scans. “No evidence of disease”. What glorious words. We expected those words. Really. We did. We were confident Brandon’s scans would be clean. We weren’t prepared for anything different. And that’s what was so terrifying.

Now, I don’t mean to be melodramatic here, and let me just apologize outright to those of you who truly ARE living through difficult, almost impossible circumstances. I want YOU to know that we know that our road has been so easy in comparison, and we totally respect the true difficulties of your journeys.

This was our “first” annual scan so I don’t mean to speak as if I’m some kind of expert on these things. But the process is completely overwhelming – no matter how sure you are that the news is going to be good. I laid awake literally the ENTIRE night before the scans thinking, oh my goodness – I have been so sure that the scans will be clean – what if they aren’t? What if the doctors come in and tell us there’s some abnormality? What if, what if, what if? Now, my head knows that was probably downright ridiculous but the heart is a different matter altogether. I felt literally panic stricken.

And so perhaps the exhaustion of the totally sleepless night is to blame for my conversation the next day at the Golden Gate Park with the complete stranger who wanted to know what brought us to San Francisco. As I recounted what I thought was a pretty good UPLIFTING story, and she reacted with utter horror, I just about fell apart. It was like I could feel the trauma of the last 3 years coming to the surface at that moment. And it wasn’t just – or even mostly – OUR circumstances that were causing me to break down. It was just the whole journey of childhood cancer – the victories, the losses, and all the in between. It just came over me at that moment. That lady probably thought I was crazy. Come to think of it….

Wow, the sense of de ja vu, as the boys played in that glorious park…that glorious park that sits right at the bottom of the hill of the hospital…the hospital where Brandon was supposed to have surgery almost one year ago that he didn’t have to have for cancer that I wish no one had. The kids at the park were adorning Halloween costumes, and it was impossible not to remember at that moment that first day in the clinic on Halloween in 2001 with all the nurses in costume. There are no words to describe how thankful we are for the many blessings we’ve received since that day. Touching those blessings with clear scans and rowdy hugs from rowdy little boys at that glorious park just about did me in.

Scans and motherly worry aside, we did have a great time in San Francisco. That city is just so incredibly beautiful. We got to do a lot of fun things – Pier 39 with all the sea lions (Brandon’s favorite!), the aquarium under the Bay (Ryan’s favorite!), Muir Woods (my and Mike’s favorite!), the Exploratorium, and even ice cream at Ghiradelli square (for you, Scott Martin!). We are all exhausted, but it was a good trip. Except I was 5 days without access to the internet to check on all of “my kids”. I think Mike was glad for that, but I felt lost without updates.

Thank you to everyone for all of the prayers and words of encouragement. We are hoping and praying for no drama for another year.

Love,
Kristin

Thursday, October 28, 2004 6:03 PM CDT

Kristin asked me to update with the wonderful outcome of Brandon's scans today! Brandon's MRI revealed no evidence of Neuroblastoma. I am singing joy and praises unto the Lord.

Please keep the Connor family in your prayers for a safe passage home!

Monday, October 25, 2004 7:48
Just to make things interesting, Ryan decided to get strep as we prepare to fly across the country for Brandon's scans. As I think about Hayley and William, Shelby and Carter, and all our friends, I know strep is no big deal - nothing a little antibiotics can't take care of. Please pray for a quick recovery for Ryan and that Brandon will not catch it. I do not want to fly across the country only to find he cannot be sedated for the scans.

We attended the service in celebration of Shelby's life today. It was beautiful, just like the whole Prescott family. Our hearts are with them as they move forward with such strength and grace through this impossible time.

Love to all our friends!
Kristin

Saturday, October 23, 2004

We can hardly bear the news of last night - our precious little Shelby has left this earth and is now an angel. Of course, we are glad she is free of this wicked disease, but our hearts just HURT. Faith and Bruce, we love you so much. We feel so much sorrow and grief. We are here for you always.

We know Shelby and Carter are together, watching over all of us. Our heads know that they are in a better place, free from disease, running the streets of gold. But our hearts cannot bear the loss of another precious child...

Saturday October 16, 2004
The Halloween decorations are up once again, and once again we remember…Three years ago on Halloween, Dr. Hudgins walked in a tiny observation room where our 5 week old baby slept and told us ever so gently that our baby had cancer. In some ways, it seems that it cannot possibly have been three years ago that this news came. In other ways, it seems like it cannot possibly have ONLY been three years ago. Our lives have changed in so many ways….

For one, we are blessed with a whole new “family” of friends that we did not have before. And while none of us wanted to be here, we are, and so we stand together, supporting each other in ways and through times that seem impossible. Through these friends and their families, we have learned about the true meaning of life. We have learned lessons about friendship that we will never forget. We have seen people in the most difficult moments of crisis respond more positively and more faithfully than we ever could. We are in awe of our friends, and we love all of you so deeply.

We have lived with the fear of losing a child. That fear, however irrational it may be, lives in our hearts. It may weaken, but it will never leave us completely. But that fear has taught us important lessons about living. Perhaps we don’t always faithfully follow these lessons, but we know them. We know about worries that are worth the tears, worth the anxiety, and those that aren’t. We know about little stresses compared to big stresses. We have watched close friends live through the greatest trials life could bring. Yes, we know about insignificant stresses that should not be stresses at all. Like I said, we don’t always live the lessons as we should but we don’t forget them.

We know how precious life is. We envision living long and productive lives, and our children living longer, happier lives. Sometimes things don’t go as planned. This is really, really hard. But it reminds us not to take a single day for granted. We don’t always remember this day in and day out, but we should.

We know that life isn’t always “fair”. I mean, is it fair that kids get cancer? Is it fair that we have lost our little Carter? Is it fair that in this week alone, we have learned of 3 new diagnosis and 2 relapses? It is NOT FAIR! And in a minute, I need to go have a talk with God about this, because my heart does not understand WHY!!!

Our lives have changed in other ways. Who would’ve thought that after 7 years of college and law school and 10 years of working, I would step away from it all to take on childhood cancer? Not me. Not Mike. Not my parents. But God has called. And while I’m talking to Him about the “fairness” issue, I’m going to have to talk to Him about this, too. I had a day today where I just felt overwhelmed by childhood cancer. I heard of Tyler Copley’s relapse. I heard that, impossibly, little Sydney Dungan (her dad started Lunch for Life) has relapsed. I feel like there is nothing I can do to STOP THIS MADNESS and it just makes me sick. So if God is going to continue to call me, I sure hope He’s going to lead the way because I feel a bit lost by the news of this week.

And poor Mike – he is up late at night assembling “Alex’s Lemonade Stands”, driving all over town to help me with the “next thing” I take on. He does this so willingly. He is such a generous, kind person…every bit of him. I should try to be more like him.

We will be heading to San Francisco on October 26 for scans. I am expecting Brandon’s scans to be completely clean. I just know they will be clean. But in the face of that “knowledge,” the anxiety is building. It’s times like these that I wish I was more like my dear friend Nancy Olson. She is always so positive, so strong in her confidence. Here’s to hoping she’ll rub off on me a little.

Speaking of Nancy, we are praying for William as he proceeds through transplant. We are praying for our new friend Kylie Barry, who was just this week diagnosed with neuroblastoma. We are praying for Isabella, another new neuroblastoma diagnosis. We are praying for Sydney and Tyler, as they begin treatment, fighting for a second remission. We are praying for Hayley, that she will make it to transplant soon. We pray for Jack, that he will continue to gain strength. We are praying for Shelby as she reaches the end of her life. We are praying that Chandler’s scans will be clean this week. There are so many others who fill our hearts.

We ask for your prayers for these children, and for Will, McKenzie, Catie, Kendrie, Rachel, Jake, Ben, Zach, Nicklaus, John, Andrew, Dustin, Ava, Ryder, Jacob, Mitchell, Mary Grace, Jack, Elizabeth, Justin, Brady and all the others fighting so hard.

Love,
Kristin

Sunday, October 3, 2004 10:44 PM

“I don’t want to leave Camp Sunshine!” These were Brandon’s words through his sobs as we headed for the car today to leave Camp Sunshine. We had such a great time at Family Camp. It was extra special to be there with the Hennessys, Escoes, Smiths and Evans along with many other wonderful families. The boys had a ball riding in the paddle boats, playing putt putt, basketball and soccer, panning for gold, learning magic tricks and watching Daddy get a pie in the face (REALLY!) and so many other things. For Ryan, the highlight of the weekend was the kids vs. adults softball game. The kids won at least 35 to nothing as the fly balls bounced off the heads of the adults in the field and fell to the ground after endless bobbling. Ryan was so proud to be part of the winning team. “We left the grown ups IN THE DUST!” he proudly declared after the game.

For Brandon, it was the playground and, in particular, the swings, that were the highlight of the weekend. Now, I don’t know what made THESE swings any better than the ones he has in his very own backyard that get lonely on occasion from lack of use. But clearly they were the best swings on this earth because I had to practically pry him off of them over and over again.

The boys also got to do lots of fishing with Mike. Mike tried to act like he wasn’t having as much fun as the kids holding the REAL worms, cutting them in half (YUCK!) and all the other gross things boys do with live worms, but I’m on to him! They were all three proud of all the fish they caught. I’m just glad they threw them back and didn’t come home with any worms in their pockets.

And while Camp Sunshine was wonderful as always, it was also terribly difficult. The last time we were there was with the Martins, and there was an enormous void without that precious family. They were with us in our hearts all weekend, as they are all the time and everywhere.

I have started working in earnest with CureSearch National Childhood Cancer Foundation, and it feels good. So many good things are happening in terms of our efforts to make childhood cancer a national health issue, as it should be, and to raise the money needed to make real progress in enabling the research that is needed to find cures and, in the meantime, better and less toxic treatments. I am speaking Wednesday evening, October 6 at our church, Shallowford Presbyterian Church, about my efforts to follow God’s call - as that is what I feel this is all about. I hope I can connect the dots so that others can see it as clearly as I do.

Thanks to all of you who have offered such kind words of support and encouragement as I have taken a leave from lawyering for a while to focus on childhood cancer. I know it is difficult for some to understand why I would do this, but I truly appreciate all the support of so many. We are, indeed, so blessed with caring friends around us.

Please pray for all of our friends who continue to fight the fight. Our hearts are with the Prescotts, and we pray that Shelby will be free from pain, and that they will find the strength they need to endure the days ahead. We also ask for your prayers for Rachel, Will, McKenzie, Catie, Kendrie, Chandler, Jake, William, Ben, Zach, Sydney, Nicklaus, John, Andrew, Dustin, Ava, Ryder, Haley, Jacob, Mitchell, Mary Grace, Jack, Elizabeth, Justin, Brady and so many more.

Love,
Kristin

Friday, September 24, 2004 10:26 PM CDT

I have found it incredibly difficult to sit down at the computer and compose any kind of update. While life has been busy, and many things have been happening, the loss of our friend, Carter Martin, pervades my every thought. Of course, we are so thankful that Carter is finally free of pain. But knowing how his family is suffering just brings me to my knees.

Leigh Ann and Scott have posted two of the eulogies from the service celebrating of Carter’s life on Carter’s website (see below for link). The words are beautiful. But the pain of this loss is truly suffocating.

For now, all else can wait. We are grieving for our friends and fighting on for the many others who need us.

Love,
Kristin

Sunday, September 12, 2004 11:11 PM CDT

Our heads knew that our friend Carter would soon be leaving us as it seemed so apparent that he would succumb to the cancer that invaded his body. But our hearts were not prepared. As word came tonight of Carter's passing, the grief that has overcome us is unspeakable. We pray for comfort and strength for the entire Martin family as they say goodbye to their sweet child. Carter changed our hearts forever. We will miss him so.

SATURDAY, SEPTEMBER 11, 2004 11:41 PM EST
To borrow from our friends, the Hennessys, our last few weeks can be described in one sentence: “It was the best of times, it was the worst of times”.

THE BEST OF TIMES: Brandon turns 3 on Monday and couldn’t be more excited. He stops whatever he’s doing several times a day just to declare how big he is. If you happen to be present for one of these episodes, he will make you look at how much he grew over the past 5 minutes! He is quite proud that he is sporting “big boy pants” now and is not shy about dropping his pants any where, any time to show you what character he’s wearing. Spiderman is definitely his favorite. I’m not sure when the Spiderman obsession started, but it’s definitely in full swing. Brandon will have a Spiderman birthday party, complete with a Spiderman moonwalk, next weekend. It will definitely be a special birthday week at our house!

Ryan is adjusting to school. It’s been a bit more difficult of an adjustment than I expected. I think he just loved his teacher from last year so much that anything his new teacher or anyone else does that’s different just isn’t the right way, or the best way, or the nicest way. This is also the first year of a full school day for him – from 8-3, and it’s a long day. I think he’ll be fine once he settles in. I have just been caught off guard, assuming he’d sail through the adjustment just like he did last year, immediately warming to his new teachers and new peers. Perhaps Mom had expectations that were a bit unrealistic. Ok, lesson learned.

We spent today at the Camp Sunshine Apple Pickin’ in Elijay. We had a ball!!! Several of our buddies were there – the Hoechstetters and Rivers, to name a few! It was so great to spend time with them and so many other families. The kids had such a ball taking a wagon ride (pulled by a tractor), petting and holding many animals in the petting zoo, playing on the giant slide and zip line, and, of course, picking apples right off the trees. We are so grateful to Camp Sunshine for providing special, unforgettable days like today.

We had a great time last weekend at the Braves’ game with 600 of our closest friends. Well, ok – hurricane Frances scared off some of you, so it wasn’t really 600. But we did have a great time notwithstanding the threat of torrential rain. The Braves did a nice pre-game ceremony announcing the Commissioner’s Initiative for Kids with me, Brandon, Will Hennessy and Alexa Rohrbach on the field with John Smoltz and some representatives of the Boys & Girls Club. Will served as the game’s Honorary Captain and got to walk the lineup cards out with the coaches to the umpires. It was all very exciting. We truly appreciate the Braves’ support of and dedication to this important initiative that is raising significant dollars for childhood cancer research.

Speaking of which, for those who don’t know, I have decided to take a leave of absence from my career of lawyering to devote all of my time and energies toward fighting this fight for our kids. I think trying to do that and keep up with the demands of my career while trying to be a good mom and wife just became impossible. I am exhausted all the way to my bones. My law firm was incredibly supportive of my request for a leave, and CureSearch National Childhood Cancer Foundation, the organization toward which I have been directing my efforts, has made this leave possible by creating a position for me within the organization. Effective Monday, Sept. 13, I will be the foundation’s “Director of Business and Community Development”…hmmm, not sure what that really means other than that I will continue to do what I’ve been trying to do for so many months now – find ways to raise the money needed for research so that our children will one day be cured of this horrendous disease.

THE WORST OF TIMES: Speaking of this horrendous disease, we are living with absolutely shattered hearts as we watch our dear friends, the Martins, suffer so profoundly. Truly, the pain they are all experiencing is unspeakable. If we didn’t know before, we certainly know now that this disease is just evil. No family should have to live the hell they are living. We pray that God will give them strength to get them through this somehow, and we pray for peace for precious Carter. Our hearts ache, and we will never, ever be the same.

We also grieve deeply for the pain the Prescotts are feeling as Shelby, too, deals with the physical pain of progressing disease. Our hearts are with you, dear friends.

It is the struggles of these families that cause me to step away from my career as a lawyer. As I watch in horror as these children slip away from us, I know in my heart that these are only 2 children and there are many, many more….many who have come before and many who will follow. It is too much. It has to stop. And while my head knows that I, as one person, will never be able to save these children, my heart knows that I have to do everything within my power to try…Maybe that’s completely crazy. But I’m quite sure I haven’t been sane for a long, long time! How can you watch this and stay sane?!

We are still praying vigorously for my sister, Kevyn, my brother-in-law, Jim, and their twins. Kayla Samantha Hennessy was born on August 28 weighing in at 1 lb 14 oz. She is such a little fighter and has done better than I think we could’ve hoped. Please continue to keep this precious baby in your prayers. The other twin, or Baby B as we call her, is still in utero. The doctors are constantly assessing whether she is safer inside or outside, and I suspect they are ready to deliver her the minute the scales tip. Kevyn has not had an easy time from day 1. My heart is heavy for her but hopeful at the same time.

Of course, on this historic day, September 11, we also are deeply mindful of the lives that were lost and the lives that were shattered by senseless acts of terrorism just 3 years ago. Our hearts go out to our nation as we remember...

We ask that you also remember many of our other friends in your prayers. Specifically, we ask for prayers of healing and/or continued good health for Rachel, Will, McKenzie, Catie, Kendrie, Chandler, Jake, William, Ben, Zach, Sydney, Nicklaus, John, Andrew, Dustin, Ava, Ryder, Haley, Jacob, Rett, Mitchell, and all of our Lighthouse friends.

Thanks for checking on us!
Love,
Kristin

Sunday, August 29, 2004 9:58 PM CDT

What a few weeks it’s been for us! As you might guess from the picture above, our last few weeks have been consumed with Major League Baseball’s decision to embrace childhood cancer and launch the Commissioner’s Initiative for Kids. In a truly unprecedented fashion, all thirty major league ball clubs came together in support of this initiative, and while the money raised – over a million dollars – will be split between the Boys & Girls Clubs of America and CureSearch National Childhood Cancer Foundation, this initiative is really all about childhood cancer. This initiative exists only because of Tom and Chris Glavine, their sincere and deep concern for our kids and our families and their desire to help. Glavine got the ear of Bud Selig and others, and it’s more than obvious to me that all of those involved at MLB are touched by our struggles.

We were invited by MLB and the NY Mets along with our friends the Hennessys to attend the big media announcement of the initiative in NY this last week. All involved made sure that our trip was memorable in every way. The faces of Ryan and Brandon as they walked outside and saw the stretch limousine waiting to take them to the airport is something I will never forget. We got to fly first class with the Hennessys and were greeted in NY by a *double stretch limo*. All of our kids were thrilled – and, I admit, so were the adults.

We spent Wednesday seeing the sights. All of the kids had a ball at the HUGE Toys R Us in Times Square, and they were almost equally thrilled to see the Statue of Liberty and all the other sights Battery Park had to offer. After all the fun, we walked over to Ground Zero for the chilling look at the devastation that still exists from the 9/11 tragedy. It was truly an emotional experience to be where so many lost their lives and to remember so poignantly how all of our lives were changed in an instant. But I’m so glad we did this. It wouldn’t have felt right to go to NY without visiting Ground Zero.

Thursday was all baseball. We sat front row at the press conference where the Commissioner’s Initiative for Kids was announced. Listening to Tom Glavine speak, I felt incredibly proud of him. I was proud that he had taken the time to study all of the “stuff” I’ve sent his way, proud that he grasps the issues so completely, proud at how fluently he communicates the heart of the issues, and proud that he so obviously genuinely cares. Bud Selig stressed at the press conference that this is to be an annual initiative, and it is clear that the potential is absolutely enormous. We can only hope…

After the press conference, we were ushered to the field, where we all got to go into the Mets dugout and watch batting practice from the field. Ozzie Smith came down and talked to us and autographed the kids’ jerseys – they were each given orange Mets jerseys with “Glavine” on the back. The kids (siblings too – thank you MLB!) were then taken onto the field where the big announcement was made. It was just thrilling to watch. It was almost surreal to me.

After the ceremony we were taken to our seats where we watched the game with the Hennessys, Paul Burke, Pres & CEO of CureSearch NCCF, and his wife and Dr. Greg Reaman, head of COG, and his wife. It was such a great day, and I enjoyed the time I had to talk with Paul and Greg about the future of our efforts to save lives. ESPN came over and interviewed Will Hennessy, and from all reports, he was a superstar on live television. To read the story on mlb.com about our day, click here .

But our week has not been all wonderful, and the heartbreak the week has brought to us is almost too unbearable to acknowledge in writing. Leigh Ann Martin called Jane Hennessy Wednesday night and shared the devastating news that Carter will not be receiving any more treatment and is now under hospice care. Jane and I, and thousands of others, were simply overwhelmed with grief for that sweet child and our dear friends. It is just NOT supposed to be this way. I laid awake all night, as I have done so much since learning the news, wondering why and wishing beyond all wishes that there was something I or ANYONE could do to save this precious child. We know Carter is suffering so horrendously, and we just hurt deeply for him and the entire family. Martins, you are in our prayers and we carry you with us everywhere we go, every second of every single day. Once again, the world simply isn’t right.

We also received difficult news from upstate New York, where my sister, Kevyn, and her husband live. As many of you know, Kevyn and her husband, Jim, have been trying for years to have a baby. They have had 3 miscarriages and 5 attempts at IVF, the last of which was successful, and Kevyn has been carrying twins. Yesterday, at 26 weeks and 4 days, Kevyn’s water broke, and last night, one of her twin girls was born, weighing 1 lb 14 oz. The other twin is still in utero surrounded by amniotic fluid, and we are praying that she will stay there for several more weeks. There are so many risks for both babies and for Kevyn right now. They are obvious. Please, please keep them all in your prayers.

We ask that you remember some of our other friends in your prayers. Please remember Shelby and the Prescott family as they have also had to make the difficult decision to stop treatment, and Shelby is also on hospice care. Remember Rachel Hansen as she begins her fight against the cancer that has returned. Remember Will, McKenzie, Catie, Kendrie, Chandler, Jake, William, Ben, Zach, Sydney, Nicklaus, John, Andrew, Dustin, Ava, Ryder, Haley, Jacob, Rett, Mitchell, and all of our Lighthouse friends.

Love,
Kristin

Sunday, August 15, 2004 10:19 PM EST

Major League Baseball embraces childhood cancer…

Who would’ve thought a few months ago that right now, in major league ballparks across the country, players would be wearing gold ribbons (symbol of childhood cancer – bet you didn’t know that!) and sports announcers would be talking about childhood cancer? Who would’ve thought that children with cancer would be throwing out first pitches and their precious faces would adorn jumbo screens everywhere? I know that with our kids front and center at major league baseball games everywhere, the country will get behind them, just as MLB has done. There’s no way people can turn their backs on these kids once they know…awareness must exist first, then all else follows.

How GREAT it is that this is happening! This and so much more. Not only will nearly a million kids get to go to major league baseball games for $1 at every park in the country, but CureSearch National Childhood Cancer foundation will receive at minimum $500,000 for childhood cancer research. $500,000 – just like that. MLB says this is just the beginning. For MLB to embrace childhood cancer like it has sends such a strong message to our country – that childhood cancer is so serious and so important that MLB – an American institution - has, in an unprecedented fashion, embraced it.

Of course, this would not be happening but for the compassionate hearts of Tom and Chris Glavine. I doubt many of you know the level of their commitment to our children and our families. You should know. They have worked so hard for us, and even with the success of this initiative, they are still working. They haven’t stepped away.

You should know that instead of playing golf with his buddies last week on off days, Glavine sat in his hotel room calling players from all the other 29 major league teams to make sure he found just the right spokesperson for each club. He had lunch with Bud Selig to talk about MLB’s commitment and to further ignite Selig’s own passion for this initiative.

Chris Glavine isn’t spending her days living the luxurious life she could either. Instead, with rolled up sleeves, she’s doing what the rest of us do, taking our kids to and from school and to and from a million activities, helping with homework, etc. – AND, on top of this, she's planning ways to help combat childhood cancer. Chris and I are just getting started on a fundraiser that was entirely her idea – a Mother’s Day luncheon to honor mothers of children with cancer. How awesome is that?! She is incredible.

It’s also really amazing that as this MLB thing started, and Glavine was trying to figure out how to get the attention of Selig and others at MLB, Al Leiter suggested he talk to one guy in particular – a guy with a lot of influence. Tommy did that. Turns out that that guy with influence had also lost a sister to childhood cancer. I know that when Tommy approached him, he didn’t know about this. I think it’s pretty amazing how all this came to be, how of all the people Tom could’ve approached, this executive was the one – the perfect one to understand the need for something like this. He was the perfect one to take it forward, not only helping our kids by doing so, but also, as it turns out, finding personal reward because of his personal loss.

This is the most obviously God-driven thing I’ve ever been involved in. I mean, we couldn’t have made this happen like it did if we’d tried. I am totally humbled by every little bit of it - every detail and how it all came together. I am humbled by God’s good work.

As you go to baseball games over the next weeks for $1 (I hope you will!), please remember why you’re there. Remember that the research this will enable is what brings hope to our hearts and the hearts of our friends. Remember our good buddies who need your prayers. Remember Shelby and the Prescott family as they move forward with such strength and courage. Remember Carter and the Martin family as we continue to pray that God will heal his little body. Remember Rachel Hansen, whose “abonormality” turned out to be the return of cancer. Remember McKenzie Fleming, whose scan leaves her parents with just enough fear they cannot sleep soundly. Remember Will Hennessy, whose precious spirit touched and inspired the Glavines, among many others. Remember Catie and Kendrie and Chandler and Jake, and William and Ben and Zach as they continue on with treatment. Remember Sydney, Nicklaus, John, Andrew, Dustin, Ava, Ryder, Haley, Jacob, Rett, Mitchell, and all of our Lighthouse friends.

Thanks for checking on us!
Love,
Kristin
*I realize I didn't really explain what is happening with MLB. To read about the Commissioner's Initiative for Kids, go to www.mlb.com. The AJC also ran stories about it Wed. and Sat. in the Living section. I can email them to you if you want copies.

Sunday, August 1, 2004 10:04 PM CDT

We returned yesterday afternoon sunned and happy from our trip to Gulf Trace, Florida with the Lighthouse Family Retreat. The Lighthouse Family Retreat was started five years ago by the most amazing person I have ever met, Melinda Mayton, as a way to serve children with cancer and their families at a seaside retreat and help them to laugh, restore family relationships, and find hope in God. I remember when my friend, Ellianne Rivers, Jake's mom, told me that Lighthouse is her "happy place". I thought I knew what she meant when she said it. I didn't, but I do now.

Melinda, the founder of The Lighthouse Family Retreat, worked as a pediatric oncology nurse for eight years, but felt God had a vision for her to create a seaside family retreat for children with cancer. In 1999 she resigned from her job at Egleston and started working full-time to develop this ministry. The first week-long retreat was held in 2000 through the hard work of Melinda and the *amazing* dedication of volunteers. Although land has been donated for the Lighthouse to build their own permanent seaside facility, for now they rent facilities, offering seven to 10 retreats a year, helping 80-100 families. We are so humbled and grateful to have been among these families and to have experienced this incredible ministry in action.

I’m not exactly sure I can find the words to describe the kindness and generosity shown to our family this past week or exactly what the time meant to us. In fact, I am going to use (with permission, of course) some of the words of my friend, Kristie Escoe, whose daughter Kendrie has leukemia and whose family was also at Lighthouse, because she did such a great job of capturing much of the week. First of all, the retreat is just plain FUN! Arts & crafts, swimming, movies on the beach, singing, Beach Olympics, a luau, a talent show; it seems like the activities just went on and on. But we also had plenty of time to simply hang out on the beach, soak up some sun, chase crabs and try to catch fish, build sand castles, fly kites and just hang out with our new friends in the incredible beach front house we stayed in.

Upon arrival, we were assigned “Family Partners”, a wonderful, kind, generous family named Gary, Jan and Amy Chaffee. It was clearly their mission to do everything in their power to make the week a happy, fun and uplifting time for our family. They did our laundry, got us drinks at meals, stocked our refrigerator with our favorite drinks, and folded down our beds at night, putting fresh-baked cookies and hand-written notes on our pillows. They watched and played with the boys while Mike and I shared special times with the other parents – even had a night out with grown ups only. Ryan will forever love Gary for allowing him to drive the golf cart (he has informed me that he “needs” a golf cart at our house!), and Brandon – well, he has periodically pouted all day, insisting that we should go back to the beach RIGHT NOW! I couldn’t agree more.

The Chaffees patiently dealt with the periodic struggle Ryan, in particular, had with the times of separation. Even at 6, this is not easy for him. But Gary, Jan and Amy were so patient, gentle and loving with both of the boys that we felt total peace with leaving them so that we could get the renewal we needed.

There were so many volunteers from Woodstock Baptist Church, who sponsored the retreat, as a mission trip and a ministry to help families like ours who simply needed a break after the stress and trauma of hearing those words, “Your child has cancer”. Many families also deal with enormous day-to-day struggles of clinic visits, chemo schedules, hospital stays, painful procedures, and so much more. These volunteers gave up their own vacation time and paid their own money to come to the beach, not to be waited on themselves, but so they could serve others. Like George Bailey says, if every time a bell rings you know an angel just earned his wings, then the Mormon Tabernacle Handbell Choir was busy this past week in Gulf Trace! I cannot express how I feel about these volunteers. There are no words for our deep appreciation. They touched our hearts, and we will never forget how they made us feel. Thank you, Gary, Jan and Amy. And thank you Woodstock Baptist Church for sponsoring the retreat and helping Melinda continue to realize her vision and follow her call from God.

For Mike and me, besides the rejuvenation of simply “getting away from it all”, the highlight was meeting the other families, all of them understanding exactly how we feel and what we’ve gone through. We were humbled to be among them as we have so often felt that we do not belong in a group like this since we have had it so, so much easier than many others. But we were welcomed by our new friends with open arms, with loving understanding of the trauma we have experienced and the fear that will forever live in our bones. We were told over and over again that Brandon’s miracle has brought hope to families, and this was so humbling. I know I keep using that word, but it is the only one I can find.

We were vividly reminded in the midst of our retreat exactly how lucky we are, when one of the boys with a (most likely) terminal brain tumor had to be airlifted back to Atlanta when he began having trouble breathing. To give you an indication of how much fun we were all having, the reports came back that this little guy was most upset at not being allowed to return to the retreat! Our heartfelt thoughts and prayers are with him and his family.

I hope that gives you some indication of how much fun we had, and a glimpse into the hearts of the wonderful people who worked so hard to make it all possible. It is definitely humbling to be on the receiving end of such kindness. We are already looking forward to the day when our boys are a little older and we can return to Lighthouse as “Family Partners” to serve a family as we were served. That will undoubtedly be an incredible time.

As Kristie so eloquently said, “if you happen to be walking along this week and stumble across a large bag full of money, and aren’t quite sure what to do with it, let me assure you that The Lighthouse Family Retreat is a wonderful organization, worthy of your donations.”

On a sad note, we heard this afternoon that my hero, Alex Scott (Alex’s Lemonade Stand), died peacefully today as she held her parents’ hands. Alex touched so many lives, and we’re so grateful to the Scotts for sharing her with us. We are grieving with them, and we pray for their strength as they go forward without Alex. We will always carry Alex and the Scotts in our hearts.

We ask for your continued prayers for Carter Martin and Shelby Prescott and their families. We also ask for prayers for all our other friends battling cancer - Will, Jake, John, McKenzie, William, Zach, Kendrie, Bridgett, Ben, Sydney, Rachel, Nicklaus, Catie, Chandler, Andrew, Dustin, Ava, Ryder, Alex, Haley, Jacob, Rett, Mitchell, and, of course, all of our new Lighthouse friends.

Thanks for checking on us and, especially, for signing our guestbook. Your messages mean so much to us!

Love,
Kristin

Sunday, July 25, 2004 10:59 PM CDT

In December, shortly after we returned from San Francisco with our miracle in hand, I received a letter from a very wise friend. I don’t know that I thought she was particularly wise at the time I got the letter. In fact, at the time, her words really bothered me. I was searching desperately for “answers” of some sort, and her words almost stung. I had been working hard on Lunch for Life before Brandon’s scheduled surgery, and then we were blessed with a miracle that was all over the news. This gave me a chance, and I felt, a responsibility, to try, try, try to raise awareness of the desperate need for research dollars so that other families might receive the same kind of outcome we had. I felt “called” to walk that path, but I was trying to find my way…I didn’t know how to do it or which way to turn. So my courageous friend, a cancer survivor herself, sent me a letter that she probably knew I would not appreciate at the time. But she sent it anyway because she was wise enough to know that I would reach the day when I could read it and understand her loving advice. I think I’m finally there.

She wrote:

I suspect I know a bit about what the next few years of your life may be like should you continue to maintain relationships with the families who have become such a central part of your world. Please know that you don’t have to stay involved. I think someone should say that to you. God delivered Brandon and your family. I have no doubt that there is a plan for all of you, but it may not necessarily be this.

I have to say this to you for a number of reasons. To live with cancer, whether it be in your own life or in that of those you care for, is a heavy burden. It is heaviest for those who fight the hardest. Parents who come away from this experience can be torn up by an unfair recognition of their own impotence in the face of disease. I say unfair because, as you know, much of what you learn going through cancer has to do with death. You and your family can be ok—you don’t have to live under an omnipresent shadow of death.

Your family has been given a new opportunity to live a whole life with open opportunity. To experience fully the special life that God has, I believe, given you, you have to find the peace inside that will allow you a calm enough view to see where you need to go next. There isn’t a timetable on this. I also don’t want you to become ill. The stress that you have been through will take its toll.
With time and patience, you will find your way and you will be great, because it was meant to be. Life is a journey, and hopefully a long one. To walk with God is not necessarily to know where the path is leading on any given day. As your friend, I beg that you take better care of yourself. Answers that come in rushing moments rarely last. The lasting answers that you want will come when your mind is calm.

......

I thought my mind was calm back then, but I know now it wasn't. I was almost offended at the suggestion that I should or could “walk away” because to stay so close to childhood cancer would be painful. I still know deep in my heart that I cannot do that and will not do that because I just can’t. It is not God’s plan for my life.

But my friend was right that this is hard – it is really, really hard. And while I struggle in the midst of so much sadness and despair, I know that what I feel is not even a fraction of the pain of those who live it…

I am shattered by the news from Bruce and Faith Prescott that Shelby’s neuroblastoma has now invaded her liver, lymph nodes and hips. Bruce and Faith have made the decision no parent should ever, ever have to make – to stop treatment. Oh, how my heart aches for all of them.

And we are always thinking of Scott, Leigh Ann, Carter and Candler Martin and were heartsick with the news that Carter’s disease is also progressing and that he is suffering in pain. There are just no words…

There are so many others we worry about, pray for, cry with – there are too many, and I cannot bear to recount the life or death struggles one by one. These are just children, for goodness sake. I do NOT understand this, and I feel so ANGRY and so utterly helpless.

We leave in the morning for the Lighthouse Family Retreat, and we are hoping for a time of fun and fellowship with others who have walked this road and struggle with these same thoughts and feelings. I pray for a time of renewal for our family so that we can stay the course.

Please pray for Carter, Will, Jake, John, Shelby, McKenzie, William, Zach, Kendrie, Bridgett, Ben, Sydney, Rachel, Nicklaus, Catie, Chandler, Andrew, Dustin, Ava, Ryder, Alex, Haley, Jacob, Rett, Mitchell, their families, and all those who fight the battle against cancer.

Love,
Kristin

From Monday, July 5, 2004

I haven’t updated much lately about the whole childhood cancer initiative, in part, because so much happened so quickly that I could barely keep up with life, much less this journal. I’ll try to hit the highlights.

As I’ve been writing about, I was continuing to meet with the executives of the ACS about developing a childhood cancer research program, at least, and a whole childhood cancer division, at best. Knowing full well that I am not the first person who has tried to get the ACS to do something like this (although not knowing why they haven’t) and in order to create some kind of leverage with the ACS to do this, I enlisted the help of Tom and Chris Glavine. The Glavines have worked with me to try to take the message to Major League Baseball, and I still hold out hope that MLB will join in the fight at a high level. That remains to be seen.

Somewhere along the way, it began to appear to me that, although the executives I was meeting with were responding with enthusiasm and assurances in terms of the ACS’ interest, the ACS was not seriously entertaining my ideas. About this time, CureSearch/National Childhood Cancer Foundation entered the picture, expressing great interest in working with me to implement my ideas. I suddenly found myself with a lot of homework to do in terms of learning this organization and its leaders.

My sole objective is and has always been to try to direct my efforts and the contacts I’ve made (i.e. the Glavines and MLB) to the organization that would be able to help the most children in the shortest period of time. While CureSearch/NCCF has been in existence for 14 years, until its new leadership stepped in in late 2002, it had more or less simply administered the NIH grants and was not truly in the business of private fundraising. However, I was assured that this was changing under the new leadership. I wanted to be sure, though, that the assurances had weight behind them. So my work began in earnest.

I talked to a number of people in an effort to learn as much as I could as quickly as I could. I met with Dr. George and Dr. Woods and got a “lesson” on the politics of childhood cancer, the history of funding, the obstacles facing us as we go forward in this battle. I got the input of researchers (called “investigators”) in various parts of the country about these issues, too. I wanted to know the views of the men and women in the trenches doing the research and treating our kids. Boy, did I get them. There were virtually unanimous feelings among them. Because the ACS has a long history of failing to support the childhood cancer community, the clinical doctors and investigators harbor deep seeds of distrust of the ACS as a funding body. They were not at all supportive of the idea of an ACS childhood cancer research program. On the other hand, they were extremely supportive of CureSearch/NCCF as a funding body. They all expressed the utmost confidence in both the integrity and the competency of the new leadership and confirmed what I had begun to learn – that the quest for research dollars has FINALLY begun in earnest.

On June 23, I had the pleasure of going to Washington to meet the whole CureSearch/NCCF staff and to meet the head of the COG, the leading cooperative organization of doctors and scientists dedicated to discovery and compassionate cures for infants, children, teens and young adults with cancer at over 200 institutions throughout North America and abroad. WOW is all I can say. Dr. Greg Reaman is the head of the COG. Talking with him, I felt proud to have him at the helm of the organization that is looked to by parents (including me) as holding the future of our children's very SURVIVAL in its hands. I was so relieved and hopeful by his explanation of the research priorities of the COG, focusing on high risk/poor prognosis cancers. Finally!!!! With the COG's focus, maybe these kids will stand a chance to grow up. I felt so proud as I sat across the table from him, clearly seeing both his personal integrity and the integrity of the institution as well as his commitment. This was truly a relief to me. He also did not mince words about his feelings of a childhood cancer research program under the wing of the ACS.

As the doctors and scientists I spoke to are the very people I am trying to HELP with my efforts, their words were of the utmost importance to me as I move forward with my own personal efforts. In a strong sense, I felt as though I would be betraying the pediatric medical community by moving forward with an ACS initiative. But I couldn't have known that when I started all this. I think God works in mysterious ways, and going through the experience with the ACS was necessary as it provided me with an education of a lifetime and put me in a much better position to help in a tangible way. Now, I feel peace knowing that with the new leadership of the NCCF/CureSearch, its dedicated and dynamic staff and the COG’s scientific agenda, our children face a brighter future.

Now that I’ve made this determination for myself, I’m trying to figure out what next? How do I steer my own efforts to help in the biggest way possible? I’ve made the introductions to the Glavines, and the MLB initiative will take time to materialize. So what do I do with myself now??? I learned long ago that taking action is how I cope with this disease and what it does to the children and families I have grown to love. I sometimes feel like if I stop working, the disease will suffocate me. So I guess in a selfish way, my work is about what I need as much as it is about helping others.

Friday, July 16, 2004 8:49 PM CDT

Yesterday started like any other day. We had a typically crazy morning, with Brandon waking up and informing us that he had indeed woken up on the "happy" side of the bed as opposed to the "grumpy" side of the bed (whew!) and insisting that I look at how BIG he grew overnight, which has been his obsession since his brother had a birthday. Everytime that anyone asks Ryan how old he is now, Brandon jumps in front of him and declares that HE is almost THREE and HE is soooo big -- just look at his muscles. You think I'm kidding? I told you, he's a comedian in training!

So as usual, Brandon entertained us all morning, and after I delivered the boys to Nancy's, I headed to work. I logged on to my computer, I read my email, I saw and felt what had happened early in the morning. I have had the biggest pit in my stomach ever since. The world is not right again.

We lost another one - another beautiful child has been taken from us. Michaela was only 8 years old -- EIGHT! Why does an 8 year old have to suffer so profusely? Why does her mom have to live with the unbearable pain of losing her child? I say her mom because that's who I relate to best. I can't imagine..or I can, and that's what is so hard. Not only can I imagine, I FEEL it every single time it happens to ANOTHER child, another family. I want to stop the madness...it makes no sense.

Mark Dungan, who started Lunch for Life last fall, is obviously struggling with Michaela's death, too. I was struck by the words he wrote in his journal. I don't think he'll mind if I share his thoughts -- that are also my thoughts.

Mark's words:
"I really take these things personally and, even today, I really do not care to talk about how things are going in my family. There was something in Michaela's mother's words that struck me deeply. It is funny how we can go through the battle of neuroblastoma and seem to go on with our lives. You never forget that your child has had cancer and you are especially mindful of the fact that it can come back. But, with all of your heart, you believe it never will. I think this is partly a protection mechanism and I am able to continue moving forward every day. It is not that I do not fear it. I do. But I do not believe it. It is a feeling stronger than hope and I do not know what to call it. Regardless of its name, I am able to keep it in the back of my mind. I am able to not be totally consumed by the the thoughts and the "what ifs." I am able to enjoy everyday. I guess the best way to explain it is that I think about neuroblastoma everyday but it does not consume me. If it did, I would not function.

And then there are days like yesterday. It becomes real again. I could not get Michaela out of my mind. I could feel it as though it was Sydney. Many people often say to me, "I could never imagine what you are going through." Well, the problem is, once you have been down this road you can not only imagine but you can feel it as well. You have been so close to the end you can taste it and smell it. I am not saying that I know what it is like to lose a child but I do know what it is like to be near the end. I can tell you what it is like when you have no hope. I can tell you what it is like to not know if your child will be with you on the very next day. It was for these reasons that I understood and identified with her letter. I felt it in my bones.

Ultimately, we are talking about a living, breathing, innocent child - just like Sydney or Graham or Truman or Preston or any other child you know. Look into your child's eyes tonight. I do everyday. Imagine. Michaela had the same feelings, concerns, and inherent right to be happy. It was not that she did something wrong. It was not that she was somehow different. For some reason, she was just chosen for this path. And now, she is without life. Suffering until the end. How do you make that okay? How do you accept it? How do you make sense of it? Go ahead, tell me!

You can't.

There is no answer.

These angel "wingings" are pissing me off. I will put a stop to it. I don't know how. But, I will. I have a purpose."

Back to my words:

So, now you MUST know why I can't stop trying to find a way to further the "cause" (I hate that word!)...I don't want there to be any more children like Michaela. I know in my head that there will be and that it's bigger than me. I can't stop it. But my heart can't accept that. It just can't. So I forge ahead...Like Mark, I have a purpose.

We are thankful for the good news we received this week. Catie and William both had great scan results and our little buddy Chandler had a good checkup. Jake and Kendrie have both had tough weeks. Please pray that they will be feeling better and that their families will find extra strength to carry them through the rough days. Pleaes pray for John Kwasinski, whose scans are on Wednesday. Please continue to pray for Rachel Hansen as her surgery date nears. We are still praying for our buddy Carter. We are begging God to deliver his miracle - NOW! Please remember all the other little warriors in your prayers too - especially Shelby, McKenzie, Ava, Anna, Zach, Dustin, Ben, Alex, Hayley, Bridgett, Nicklaus, Andrew, Ryder and all the others who are fighting so hard.

Love,
Kristin

From Monday, July 5, 2004

I haven’t updated much lately about the whole childhood cancer initiative, in part, because so much happened so quickly that I could barely keep up with life, much less this journal. I’ll try to hit the highlights.

As I’ve been writing about, I was continuing to meet with the executives of the ACS about developing a childhood cancer research program, at least, and a whole childhood cancer division, at best. Knowing full well that I am not the first person who has tried to get the ACS to do something like this (although not knowing why they haven’t) and in order to create some kind of leverage with the ACS to do this, I enlisted the help of Tom and Chris Glavine. The Glavines have worked with me to try to take the message to Major League Baseball, and I still hold out hope that MLB will join in the fight at a high level. That remains to be seen.

Somewhere along the way, it began to appear to me that, although the executives I was meeting with were responding with enthusiasm and assurances in terms of the ACS’ interest, the ACS was not seriously entertaining my ideas. About this time, CureSearch/National Childhood Cancer Foundation entered the picture, expressing great interest in working with me to implement my ideas. I suddenly found myself with a lot of homework to do in terms of learning this organization and its leaders.

My sole objective is and has always been to try to direct my efforts and the contacts I’ve made (i.e. the Glavines and MLB) to the organization that would be able to help the most children in the shortest period of time. While CureSearch/NCCF has been in existence for 14 years, until its new leadership stepped in in late 2002, it had more or less simply administered the NIH grants and was not truly in the business of private fundraising. However, I was assured that this was changing under the new leadership. I wanted to be sure, though, that the assurances had weight behind them. So my work began in earnest.

I talked to a number of people in an effort to learn as much as I could as quickly as I could. I met with Dr. George and Dr. Woods and got a “lesson” on the politics of childhood cancer, the history of funding, the obstacles facing us as we go forward in this battle. I got the input of researchers (called “investigators”) in various parts of the country about these issues, too. I wanted to know the views of the men and women in the trenches doing the research and treating our kids. Boy, did I get them. There were virtually unanimous feelings among them. Because the ACS has a long history of failing to support the childhood cancer community, the clinical doctors and investigators harbor deep seeds of distrust of the ACS as a funding body. They were not at all supportive of the idea of an ACS childhood cancer research program. On the other hand, they were extremely supportive of CureSearch/NCCF as a funding body. They all expressed the utmost confidence in both the integrity and the competency of the new leadership and confirmed what I had begun to learn – that the quest for research dollars has FINALLY begun in earnest.

On June 23, I had the pleasure of going to Washington to meet the whole CureSearch/NCCF staff and to meet the head of the COG, the leading cooperative organization of doctors and scientists dedicated to discovery and compassionate cures for infants, children, teens and young adults with cancer at over 200 institutions throughout North America and abroad. WOW is all I can say. Dr. Greg Reaman is the head of the COG. Talking with him, I felt proud to have him at the helm of the organization that is looked to by parents (including me) as holding the future of our children's very SURVIVAL in its hands. I was so relieved and hopeful by his explanation of the research priorities of the COG, focusing on high risk/poor prognosis cancers. Finally!!!! With the COG's focus, maybe these kids will stand a chance to grow up. I felt so proud as I sat across the table from him, clearly seeing both his personal integrity and the integrity of the institution as well as his commitment. This was truly a relief to me. He also did not mince words about his feelings of a childhood cancer research program under the wing of the ACS.

As the doctors and scientists I spoke to are the very people I am trying to HELP with my efforts, their words were of the utmost importance to me as I move forward with my own personal efforts. In a strong sense, I felt as though I would be betraying the pediatric medical community by moving forward with an ACS initiative. But I couldn't have known that when I started all this. I think God works in mysterious ways, and going through the experience with the ACS was necessary as it provided me with an education of a lifetime and put me in a much better position to help in a tangible way. Now, I feel peace knowing that with the new leadership of the NCCF/CureSearch, its dedicated and dynamic staff and the COG’s scientific agenda, our children face a brighter future.

Now that I’ve made this determination for myself, I’m trying to figure out what next? How do I steer my own efforts to help in the biggest way possible? I’ve made the introductions to the Glavines, and the MLB initiative will take time to materialize. So what do I do with myself now??? I learned long ago that taking action is how I cope with this disease and what it does to the children and families I have grown to love. I sometimes feel like if I stop working, the disease will suffocate me. So I guess in a selfish way, my work is about what I need as much as it is about helping others.

I do have a number of ideas in terms of ways of mobilizing people who want to help (I think there are a number of us out here) in ways that are truly helpful but not completely time consuming. I’ll share these ideas at some point this week with my primary contact at CureSearch/NCCF and see what he thinks. If you happen to be one of those who wants to help raise the money the researchers need to finally beat this stinkin’ disease, let me know. Together, I truly feel that we WILL make a difference. As unbelievable as it may sound, I have learned that up to now, no one has really TRIED to take the fight to the next level -- probably assuming like I did that others are already doing it. Now that I know the true state of things and who is and who is not leading the way, I feel much better positioned to do something to really help.

Friday, July 9, 2004 10:41 PM CDT

Dear Friends:
I write tonight to ask for your urgent and vigorous prayers for our friends, the Hansens. Their daughter, Rachel, had routine scans today that showed an "abnormality". I think there's only one word a cancer parent hates more than "relapse" or "cancer" and that is "abnormality". They are frantic with worry as they wait through what will be a long weekend before more scans are done next week and Rachel has surgery to biopsy the mass. Please pray that this is scar tissue and not recurrent cancer. Please visit their website and offer words of encouragement: www.caringbridge.org/mn/rachelhansen . Sometimes it is only the encouragement of others that gets us through our darkest moments.

I have that feeling of utter helplessness that has become such a familiar feeling. I sit staring at my computer, as if I will find some magic power if I stare at the screen long enough that will make this nightmare end once and for all for all of these precious families. My heart aches for this family, for the Martins and for so, so many more...I HATE this disease! I truly HATE IT!

MONDAY, JULY 5, 2004

We are preparing to celebrate Ryan's birthday! Ryan turns 6 on July 11. SIX! I can’t believe it…that seems so old. It was just yesterday….I know, I know. I do this every single year. I always say that the sappiness is a side effect of having a child with cancer. We will be celebrating the day with a cosmic bowling birthday party. Ryan’s really excited!

We had a fun 4th of July with lots of celebrations. Our friend, Newton, has a 4th of July birthday, so they always have a big party. This year he turned 40 so they went all out. I was sure Mike and Newton were going to blow their arms off with the fireworks, but they had a blast (no pun intended!). Brandon did not like the fireworks because they were “too noisy”. I’m quite sure that was the first time something has been too noisy for my very noisy little guy! Today he’s talking about how “cool” the fireworks were. Hmmm, a little revisionist history going on.

I haven’t updated much lately about the whole childhood cancer initiative, in part, because so much happened so quickly that I could barely keep up with life, much less this journal. I’ll try to hit the highlights.

As I’ve been writing about, I was continuing to meet with the executives of the ACS about developing a childhood cancer research program, at least, and a whole childhood cancer division, at best. Knowing full well that I am not the first person who has tried to get the ACS to do something like this (although not knowing why they haven’t) and in order to create some kind of leverage with the ACS to do this, I enlisted the help of Tom and Chris Glavine. The Glavines have worked with me to try to take the message to Major League Baseball, and I still hold out hope that MLB will join in the fight at a high level. That remains to be seen.

Somewhere along the way, it began to appear to me that, although the executives I was meeting with were responding with enthusiasm and assurances in terms of the ACS’ interest, the ACS was not seriously entertaining my ideas. About this time, CureSearch/National Childhood Cancer Foundation entered the picture, expressing great interest in working with me to implement my ideas. I suddenly found myself with a lot of homework to do in terms of learning this organization and its leaders.

My sole objective is and has always been to try to direct my efforts and the contacts I’ve made (i.e. the Glavines and MLB) to the organization that would be able to help the most children in the shortest period of time. While CureSearch/NCCF has been in existence for 14 years, until its new leadership stepped in in late 2002, it had more or less simply administered the NIH grants and was not truly in the business of private fundraising. However, I was assured that this was changing under the new leadership. I wanted to be sure, though, that the assurances had weight behind them. So my work began in earnest.

I talked to a number of people in an effort to learn as much as I could as quickly as I could. I met with Dr. George and Dr. Woods and got a “lesson” on the politics of childhood cancer, the history of funding, the obstacles facing us as we go forward in this battle. I got the input of researchers (called “investigators”) in various parts of the country about these issues, too. I wanted to know the views of the men and women in the trenches doing the research and treating our kids. Boy, did I get them. There were virtually unanimous feelings among them. Because the ACS has a long history of failing to support the childhood cancer community, the clinical doctors and investigators harbor deep seeds of distrust of the ACS as a funding body. They were not at all supportive of the idea of an ACS childhood cancer research program. On the other hand, they were extremely supportive of CureSearch/NCCF as a funding body. They all expressed the utmost confidence in both the integrity and the competency of the new leadership and confirmed what I had begun to learn – that the quest for research dollars has FINALLY begun in earnest.

On June 23, I had the pleasure of going to Washington to meet the whole CureSearch/NCCF staff and to meet the head of the COG, the leading cooperative organization of doctors and scientists dedicated to discovery and compassionate cures for infants, children, teens and young adults with cancer at over 200 institutions throughout North America and abroad. WOW is all I can say. Dr. Greg Reaman is the head of the COG. Talking with him, I felt proud to have him at the helm of the organization that is looked to by parents (including me) as holding the future of our children's very SURVIVAL in its hands. I was so relieved and hopeful by his explanation of the research priorities of the COG, focusing on high risk/poor prognosis cancers. Finally!!!! With the COG's focus, maybe these kids will stand a chance to grow up. I felt so proud as I sat across the table from him, clearly seeing both his personal integrity and the integrity of the institution as well as his commitment. This was truly a relief to me. He also did not mince words about his feelings of a childhood cancer research program under the wing of the ACS.

As the doctors and scientists I spoke to are the very people I am trying to HELP with my efforts, their words were of the utmost importance to me as I move forward with my own personal efforts. In a strong sense, I felt as though I would be betraying the pediatric medical community by moving forward with an ACS initiative. But I couldn't have known that when I started all this. I think God works in mysterious ways, and going through the experience with the ACS was necessary as it provided me with an education of a lifetime and put me in a much better position to help in a tangible way. Now, I feel peace knowing that with the new leadership of the NCCF/CureSearch, its dedicated and dynamic staff and the COG’s scientific agenda, our children face a brighter future.

Now that I’ve made this determination for myself, I’m trying to figure out what next? How do I steer my own efforts to help in the biggest way possible? I’ve made the introductions to the Glavines, and the MLB initiative will take time to materialize. So what do I do with myself now??? I learned long ago that taking action is how I cope with this disease and what it does to the children and families I have grown to love. I sometimes feel like if I stop working, the disease will suffocate me. So I guess in a selfish way, my work is about what I need as much as it is about helping others.

I do have a number of ideas in terms of ways of mobilizing people who want to help (I think there are a number of us out here) in ways that are truly helpful but not completely time consuming. I’ll share these ideas at some point this week with my primary contact at CureSearch/NCCF and see what he thinks. If you happen to be one of those who wants to help raise the money the researchers need to finally beat this stinkin’ disease, let me know. Together, I truly feel that we WILL make a difference. As unbelievable as it may sound, I have learned that up to now, no one has really TRIED to take the fight to the next level -- probably assuming like I did that others are already doing it. Now that I know the true state of things and who is and who is not leading the way, I feel much better positioned to do something to really help.

A number of our friends are coming up on scans this month. Catie, John, Mitchell come to mind immediately – I know there are others. Please pray for these little warriors along with Will, Jake, Shelby, McKenzie, William, Zach, Kendrie, Bridgett, Ben, Sydney, Rachel, Nicklaus, Chandler, Andrew, Dustin, Ava, Ryder, Alex and, especially, for our little buddy Carter.

Love,
Kristin

Saturday, June 26, 2004 10:52 PM CDT

What is it about the words that come out of little mouths? Here are a few from our house worth sharing:

Tonight, as Brandon was sitting at the dinner table eating course 1, waiting for me to finish cooking course 2 (demanding little guy, isn’t he?!), he suddenly grabbed his leg and started complaining about a bug bite he’d just gotten. He said, “Why you not spray bug spray, Mommy?” I told him that I usually don’t pull out the bug spray when we’re sitting down for a nice, indoor dinner. He said, “There’s a bug in here. It got my leg. So you need to spray bug spray.” Ok, fair enough. So he proceeded to go on and on about this new mosquito bite on his ankle and then he declared, “I need a new leg. I need a stronger leg, Mommy!!” So I looked at him curiously and said, “Well, Brandon, where would we get you a new leg?” He didn’t miss a beat – “At Target!” Of course, at Target!

Actually, I thought this was pretty funny for a while. But then the thoughts of Carter Martin filled my head, and I knew just how funny Brandon's words weren't. There are so many kids like Carter who would love to be able to go to Target and get a new leg. If only it was that easy.

Ryan’s had a few things to say lately, too. This week, we were driving to Nancy’s one morning and completely out of the blue, Ryan looked at Brandon and said, “Brandon, do you know what cancer is?” Brandon looked at him. Ryan continued, “Do you know, Brandon, that cancer can kill you.” “Yeah, uh huh,” Brandon answered. Ryan went on, “Do you know that you had cancer, Brandon?” Brandon was going along with it, “Yeah, sure!” So Ryan finished, “You don’t have cancer anymore, Brandon. Did you know that? Isn’t that great?!”

Ryan went straight from telling Brandon that he doesn’t have cancer anymore to telling me that it was his turn to choose a song to listen to and he wanted Five for Fighting’s 100 Years. Obediently, I put in the song (they have me trained!) and while I sat there, wondering where in the world that dialogue came from, he went on with his morning as if he’d said nothing of any significance at all.

I haven’t yet had a chance to write about our little friend, McKenzie Fleming, and her miracle. I wrote about McKenzie a few weeks ago, right after I learned that she had relapsed. This sweet little girl is just a baby – not even 2 yet. And even though I had never met the Flemings, news of her relapse weighed so heavy on my heart. The next week, the Flemings were here in Atlanta for McKenzie’s surgery. Here from Moultrie, they had no support network at all, so I invaded their privacy and went to meet them. What an absolutely precious family. After seeing all of their faces, my heart just hurt so much for what they were facing – a dismal prognosis. Well, the results of McKenzie’s surgery were just miraculous – the nodules in her lungs were not malignant. The beast has not returned. I can only recall one time that I felt more relieved than I did when Carol Fleming called with the news (remember the other miracle?!). Thank you, God, for another miracle.

Happy 90th birthday to Mike's grandmother. We wish we could’ve all been there for the celebration, but it wasn’t manageable for us, so it was most important that Mike be there - definitely a special time for him.

The boys and I ventured to the zoo today. We had a good time, for the most part. Well, there was at least one part that wasn’t so much fun for me. We were waiting in line to get lunch, and I was, of course, nagging them to stay right with me. So listening well as I always tell them to do (HA!), they stayed with me – chasing each other around me in the midst of the crowd. So I told them to stop and Brandon decided that standing in line was not so much fun and he’d had enough. He headed for the door. I was standing there thinking, “Do I get out of line to go get him, giving up my place and starting this futile exercise all over again or do I send Ryan after him and hope for the best?” Perhaps sensing my dilemma and wanting to eat, Ryan ran after him. Ah, but Brandon did not want to be retrieved by big brother and started carrying on for all to see – and all DID see. I stepped out of line and retrieved my children. They did finally get to eat, but I was totally frazzled by then and wondering why I thought taking them to the zoo all by myself was such a great idea. I was also silently apologizing to all those moms I know I judged too harshly before I had my own little rugrats to chase after. After a long and tiring few days, I’m wondering how single parents and parents with spouses who travel all the time do this???

Please pray for our buddy Carter, and that it will now be his turn for the miracle he needs. Please also pray for Will, Jake, John, Shelby, McKenzie, William, Zach, Kendrie, Bridgett, Ben, Sydney, Rachel, Nicklaus, Catie, Chandler, Andrew, Dustin, Ava, Ryder, Alex and all the other little warriors still fighting. I’m sad to say that this week, we lost one of the little girls I’ve talked about and asked for prayers for – Becca Lockler. Please pray for strength for her family.

Love, Kristin

Monday, June 14, 2004 10:13 PM CDT

Well, I think the Connor household is officially exhausted! What a weekend we had! On Saturday, we joined with thousands around the country and held our Alex’s Lemonade Stand in honor of little Alex Scott. As you may know, Alex has been battling neuroblastoma for over 7 years now. When she was 4, Alex decided to hold a lemonade stand in her yard to raise money for “her” hospital. Her hope was to help her doctors find a cure for cancer. Her first stand raised $2,000.

This year, Alex had a new dream – to hold at least one stand in every state in the country on the same day, and to raise a million dollars. So on Saturday, we held our stand downtown. But by no means were we the only GA stand. Not only did my friend, Laura, organize other “mini” neighborhood stands, but many Georgians who saw Alex on the Today Show and Oprah decided, with no prompting, to set up their own stands. I have no idea how many Alex’s Lemonade Stands were held in GA on Sat. but I keep hearing of more and more. It’s incredible.

Our stand downtown and Laura’s mini stands together raised over $7,000. Our current total is actually around $7292. It was an incredible day. The children all took over. They were so proud as they poured lemonade and accepted donations. We also made a huge “card” to send to Alex that says “Georgia Loves Alex” and visitors to our stand signed it. I’ll get it off to Alex this week. The feeling at our stand was indescribable, as over 50 families came together throughout the day to help – giving up their Saturday to help one little girl fulfill her dream. I will never forget that day, or how I have felt since then as I’ve corresponded with Alex’s mom and dad. They report that Alex is feeling happy and proud, even as her disease spreads and her health fails. Everyone who donated $1.00 to this effort had a hand in making Alex feel happy and proud. Considering how much that little girl and her family suffer, it is literally rather overwhelming to me to know that we helped bring happiness to her. We still have nearly 1900 bottles of lemonade left over and are now trying to decide if we can muster up the energy to hold another stand at one of the big 4th of July events to sell the rest of our lemonade for Alex. Hmmm…..

Ryan was a real trooper, staying downtown with us literally all day – from 8:30 in the morning until 8:30 at night. Brandon also lasted a long time in the GA summer heat. We were all so worn out on Sunday. I could hardly see straight – and the boys were pretty grumpy, as it goes with tired little kids.

As Ryan was going to bed last night and on the heels of being punished for some of his “grumpy behavior”, he looked at me with big sad blue eyes and said, “Mommy, do you love Brandon more than me? I mean, it’s ok if you do, but will you just tell me?” Ok, so I know that probably every kid in the universe has thought his or her parents loved the siblings more, but his question broke my heart. All week long, I did radio interviews, and Ryan listened, as people asked me all about Brandon. When I’d finish, Ryan would say, “Why didn’t they talk about me, Mommy?” So when his “do you love Brandon more than me” question came last night, it sat on top of my week long struggle with the issue of Brandon in the forefront of discussion and how that was affecting Ryan. I tried so hard all week to help Ryan to feel like, as the BIG brother, his role at the lemonade stand was extra important – there were certain jobs only BIG boys could handle. But I still worry about him and feel the guilt shoot through with questions like last night’s. I think about how we spent 2 years trying to shield Ryan from the pain of our crisis, and now that it’s over, it’s almost worse b/c the attention is so focused on Brandon’s miracle. I don’t know what to do other than to continue to assure him that he is special…

In addition to preparing for Alex’s stand, last week was totally crazy as the childhood cancer initiative moves forward rapidly. The American Cancer Society has finally outlined its commitment, and the National Childhood Cancer Foundation continues to express its interest in working with me on this. There are far too many issues to recount here as I try to determine which organization will make the best institutional partner for me. Suffice it to say, the last months have been an education of a lifetime in many, many respects. Sometimes I feel like I can’t do any more. The state of the national effort to fight childhood cancer (to the extent there is one) is a rather tangled web, and it’s hard to sort through all the issues, the politics, the agendas, the personalities. Sometimes I want to just collapse and cry and say, “Can’t we all just get along and do the right thing for these kids?!” It frustrates me. If only I could walk into a lab somewhere and find a cure myself, I’d do it. But a scientist, I am not. So I can only do the best with what I do have, which is a clear call from God, lots of friends cheering me on and lots of families who hold out hope in their hearts that somewhere, someone will try to find a way to help their children. These families are hoping that that person won’t become too weary or be defeated by the politics and agendas and won’t simply throw up their hands and go home.

I flew to Minneapolis on Thursday of last week along with the #2 guy from the NCCF to meet with Tom Glavine about the whole initiative. Although I’ve met Tom’s wife, Chris, and talk to her often, I’d never met him before. Wow. He’s such a great guy. I can imagine that there was a time not long ago when being in the presence of such an incredible athlete might have left me feeling a bit intimidated. But I didn’t feel that at all. Tom was so nice and engaged in our discussions. He really DOES care about our kids and about helping where and how he can. Please pray that he is able to make progress with his important contacts, who literally hold the key to helping us dramatically increase the amount of money available for childhood cancer research – by the millions and millions – in the short term. This could literally have a dramatic effect on the science of childhood cancer. That’s just an awesome thought.

Please pray for our buddy Carter and his miracle. Please also pray for Will, Jake, John, Shelby, McKenzie, William, Zach, Kendrie, Bridgett, Ben, Sydney, Rachel, Nicklaus, Catie, Chandler, Andrew, Dustin, Ava, Ryder, Becca and Alex and all the other little warriors still fighting.

Love,
Kristin

Monday, June 7, 2004 10:21 PM CDT

I write tonight with such a heavy heart. There’s been so much bad news lately. My heart is feeling shattered. All of our little buddies need our prayers, but my heart is heavy with the news we’ve received in the last days:

Our little friend Carter Martin is back in the hospital with new tumor around his spine. Please pray for Carter’s miracle. www.caringbridge.org/ga/cartermartin

Our friend Shelby Prescott needs our prayers, too. Shelby’s fighting relapsed neuroblastoma, and the Prescotts received news last week that Shelby’s disease has progressed. Keep fighting, little warrior. www.caringbridge.org/ga/shelbyprescott

Little McKenzie Fleming who will turn 2 in September has relapsed. She needs our vigorous prayers, too. www.caringbridge.org/ga/mckenzief

William Olson, fighting relapsed brain tumor, has also been in the hospital over the last week. He has not been able to get transfusions when needed because of the complete shortage of blood platelets. Please pray for William and his family! www.caringbridge.org/ga/williamolson

We are gearing up for Alex’s Lemonade Stand on Saturday, June 12 at the Downtown Festival and Tour of Lofts near Centennial Park (http://www.atlantadna.org/festival/ ). The actual festival will be along Broad, Luckie and Walton Streets, and Alex’s stand will be part of the Children’s City. We’re so excited and honored to be helping Alex to fulfill her dream of raising $1 million for childhood cancer research. Alex was on Oprah today and the Today show on Friday. The Atlanta media is gearing up to cover our efforts, so listen to 104.7 the Fish during the Thurs and Fri morning shows, Z93, 790 the Zone during afternoon drive time on Thurs and on the morning show, and the Q100 morning show, and in the AJC. I’ll be doing lots of interviews, talking about my little hero, Alex, and how desperately funding is needed for research. Alex knew that at age 4, when she decided to sell lemonade to raise money for “her” hospital. Wow, what we can learn from her. She's a such a hero!

Her book, Alex and the Amazing Lemonade Stand, is just priceless. It is now one of my favorite books of all times, and the lessons about serving others are so incredible. Please consider buying the book and donating it to your school library. You can order it on amazon.com or on www.alexslemonade.com .

Ryan and Brandon are doing great, enjoying the summer, having fun being together (most of the time) during the days instead of Ryan going off to school. The newest craze at our house seems to be fishing, which pleases Mike to no end. I’m fine with it as long as I don’t have to touch anything they catch!

I’ve been hard at work on a major childhood cancer initiative of some kind. It’s been a difficult few weeks. There’s been so much going on, I could never put it all down. The meetings with the ACS continue, and tomorrow I’ll meet with the Chief Med. Officer to gauge their institutional commitment to childhood cancer. The #2 guy of the National Childhood Cancer Foundation flew to Atlanta on Friday to meet with me to talk about their efforts. I really have no idea what will happen with all this in the end, but it’s really hard for me to accept that it can possibly be this hard to help. I really hope one day it will not be this way. I have learned SO MUCH in the last weeks in terms of the complete combined effort of all groups to the childhood cancer cause. To say that I am under whelmed would be an understatement. It's time to get serious. I get calls or emails virtually every single day from families whose children are suffering. I feel as though I don't have time to waste with groups that are not serious about stepping up this fight. In fact, I feel a responsibility to the growing number of families who look to me as their voice to forge ahead. I am trying to figure out, and quickly, what organization is capable, committed and passionate, not just about building a successful "business", but also about these children and their families. There's much, much more to be done than what I'm seeing in black and white. It makes me sad that there’s not more of a commitment to our kids. I would really appreciate prayers for strength and wisdom as I move forward.

Please pray for Carter, Will, Jake, John, Shelby, McKenzie, William, Zach, Kendrie, Bridgett, Benji, Rachel, Nicklaus, Catie, Chandler, Andrew, Dustin, Ava, Ryder, Alex, Becca. We love you all!
Kristin

Tuesday, May 25, 2004 10:25 PM CDT

I know I haven’t updated in a while. It’s been a virtual whirlwind since the last update on Mother’s Day. The last few weeks have been incredibly busy but have also brought with them important lessons – some good, some not so good, but all important. Since I can’t seem to make much progress on the book I’m writing in my “spare” time, I was trying to think about where to record these lessons so I won’t forget them. What better place than here. So, here goes:

WHAT I’VE LEARNED
1. That human nature is a funny thing. Why is it that we (ok, I shouldn’t purport to talk about anyone else, as if I’m still somehow “normal” – so change that to “I”) can get a hundred positive, supportive comments, letters or emails and two or three negative ones, yet we (here I go again) seem to remember and focus on the negative ones, as if they are somehow the collective voice?! I never did claim to have a thick skin, but really, I need to do better. I’m learning to let things roll off my back, remembering and constantly reminding myself where my heart is. Actually, I’m very comfortable with where my heart is and why I’ve made the decisions to do the things I’m doing. The letting things roll off my back approach really goes against my nature, but I find it a matter of survival almost. I don’t really have the energy to fight every battle, so I suppose I must choose those that matter. And trying to convince those few who think there’s something wrong with what I’m trying to do for children with cancer that my efforts are thoughtfully directed and come from the heart perhaps is not a battle worth fighting.

2. This brings me quite naturally to number two. Another lesson in human nature. It’s interesting to me that there always seems to be someone out there who is going to find fault. I remember in November when the AJC story about our miracle ran. Within days (I think it was ONE), I heard that our family was being criticized for taking our child out of town for care. I remember feeling at first hurt and then just utterly dumbfounded that anyone could find an angle to criticize in such a HAPPY story. I wondered why people couldn’t just rejoice in the miracle of a healed child and let it be. So now, as the AJC has reported my efforts to work with the ACS to wage war against childhood cancer, new critics have surfaced. I was stunned to get emails blasting me for choosing to seek the help of an organization that has not historically supported childhood cancer. It hurt to have my motives questioned, as if they could possibly be anything other than helping the children I so desperately love. But my dear father reminded me that when you choose to put yourself out there, you’d better be prepared to be criticized. It always comes. I want to explain to these critics that the ACS, with its powerful “brand” is capable of doing vastly more for our children than just about any other existing organization – if they will. They’re listening. I’d be crazy not to try. I may fall flat on my face, but I have to try. I hear you Dad. I’m letting go of what must be the natural human response to want to defend one’s actions and honor.

3. Now the good stuff. My heart soars with the letters and emails of support we’ve gotten. To all of you who have talked about what I’m trying to do, thank you. Your words raise the awareness that is so desperately needed, and they mobilize. Hearts are being awakened every day to the needs of our children, and the task at hand seems less daunting knowing that so many are out there, ready to roll up their sleeves and help. To those who are and continue to help me so much, thank you. Jen, Jane, Ellianne, Amy, Jill, Nancy, Jenny…ALL of you. Thanks. You give me the courage to move on in spite of the critics. You remind me of what I know – this is for the children. They need us all. We have to try.

4. The Glavines. What do I say about these wonderful people?! I wish I could stand in the middle of every baseball stadium in America and tell people about the huge hearts of Tom and Chris Glavine. Tom and Chris are working so hard to help me push the ACS initiative to the next level. They have already done so much more than I ever would have THOUGHT to ask them to do. But what amazes me the most about them is how much they get it. They GET that suffering children are worth fighting for. They GET that they have a powerful name that can be used for good. They GET it and they are DOING it. If only more celebrities were like them – I cannot imagine all the good things that could be accomplished. I wish I could think of someway to thank them for what they’re doing – but more than that, for really caring, because they DO really care. They are just amazing, and I am forever grateful to them. I keep thinking about how many moms like me of children with cancer would be crying tears of relief and hope if they just knew the level of the Glavines’ commitment. These moms would know that much more can and will be accomplished with their help than without it.

I know there’s more, but I guess I’ll save the thoughts for another day. We’re gearing up for Alex’s Lemonade Stand, which we’ll hold on June 12 at the Downtown Festival and Tour of Lofts (on the outskirts of Centennial Park). I hope you’ll come by between 11:00 am and 7:00 pm, enjoy the festival, and buy some lemonade –all the while, fulfilling Alex’s dream. Look for Alex on Oprah and the Today Show next week, and look for her new children’s book, Alex and the Great Lemonade Stand, out on June 1. To read more about her go to www.alexslemonade.com .

Please keep all our buddies in your prayers. We’re always thinking of you and carrying you with us in our hearts – Carter, Will, Jake, John, Shelby, William, Zach, Kendrie, Bridgett, Benji, Rachel, Nicklaus, Catie, Chandler, Andrew, Dustin, Ava, Ryder, Alex, Becca. We love you all!

Happy Summer!
Love,
Kristin

Sunday, May 9, 2004 11:08 PM CDT

What a wonderful day! I woke up this morning to Ryan climbing in my bed, draping me with a huge hug and declaring, "I LOVE you, Mommy. You're the best Mommy in the whole world!" Of course, little Brandon the mimic was right behind saying, "You my best Mommy!" I am sure it simply doesn't get any better than this...

Life has been good to us lately. Like everyone, we've sure been busy. I'm convinced that May rivals December as the busiest month of the year with all of the end of school stuff. Add to that Lauren's Run, Alex's Lemonade Stand and my work on the American Cancer Society initiative (oh, and did I mention the paying job?!?), and our plates are full. But I can't imagine it any other way. I am so grateful to the national executives of the ACS who continue to meet with me, enthusiastically embracing my proposal to launch a campaign that will raise millions of dollars to support childhood cancer research and, ultimately, I hope and pray, will truly make a difference in developing new treatments and, someday, a cure for this miserable disease. It helps, of course, that Tom and Chris Glavine have agreed to step in with Tom's name and both of their enthusiastic support. They are wonderfully kind-hearted, generous people who care about our children. They know Tom's name will go far in helping us, and they are willing to help us go as far as we can to help our children. I will be forever grateful to them for their support of my efforts. I sure can do a lot more with them than I could've without them.

As Ryan approaches the end of his kindergarten year, I am once again recognizing that I've turned into one giant sap. I am so sad to see this year end. I love his teachers so much -- they supported us incredibly through a difficult year. They loved our child and helped him sail through our times of crisis. They hold such a special place in my heart.

I also realize what a BIG KID Ryan has become. I am so proud of him - he has a heart of gold (yes, even when he's sitting on his brother, he still loves Brandon!), and he is such a sweet one. Sometimes I just want to hold on to him, keep him from growing up any more.

Brandon is doing great, too. He continues to keep us laughing most of the time with his antics. His new thing is doing "tricks", complete with "abracadabra, alakazam". Like when it's time to get out of the bath or go to bed, he has LOTS of tricks to show us all. He has joined Ryan (ok, I admit it, and me, too) as an American Idol junkie and wakes up every Wed. with the first words out of his mouth being, "Who got booted?!" Brandon is very high energy and does everything with a lot of vigor -- including whining and protesting when he doesn't get his way. It drives me crazy --- almost. Everytime I get flustered by his 2ish behavior, I stop and thank God for giving me my healthy two year old to have temper tantrums. I'll take them -- every one of them.

Please continue to pray for our dear little friend, Carter Martin, and his parents, Scott and Leigh Ann, big brother Candler and Scott and Leigh Ann's parents and family. The whole family just lives in our hearts -- not an hour goes by where we aren't thinking of them, aching for them. WE believe in miracles, and we are desperately praying that God will grant one to our little friend.

Please remember all our other little buddies in your prayers, too -- Will, John, Jake, Shelby, Sydney, Catie, Chandler, William, Andrew, Kendrie, Nicklaus, Ava, Dustin, Benji, Ryder, Alex, Becca, Zach, Abby, Bridgett, Mitchell and all the other children battling cancer.

Happy Mother's Day to all you Moms out there. I know you make the world go round!!!
Love,
Kristin

SATURDAY, MAY 8 , 2004
Thanks to all who responded to my plea for help with Alex's Lemonade Stand! What an incredible response!!! I should about have a nervous breakdown more often (just kidding!!). The stand will be held in Centennial Olympic Park on June 12! I'm so excited about this location. For now, I'm mostly in need of help securing donated lemonade, ice and cups, so if you can help with this, I would so appreciate it! As we get closer, I'll need lots and lots of help spreading the word, but for now, my efforts are focused on getting the supplies!

Happy Mother's Day to everyone!
Love,
Kristin

SUNDAY, MAY 2, 2004
Dear Friends

Ok, so as hard as it is for me to admit this, I must acknowledge that I have overextended myself. Over the last 6 months, I have been trying to figure out my place in the war against childhood cancer – a war I desperately want to fight. Through Lunch for Life, Lauren’s Run, CURE Childhood Cancer activities and my American Cancer Society initiative, I have been trying to raise money for curative research so our children with cancer will have more treatment options and, eventually, a cure will be found.

Somewhere along the way, I met the Scott family. Their story is the most inspiring story I have ever heard.

Alex Scott is an 8 year old with neuroblastoma (same cancer Brandon had). She was diagnosed 2 days before her first birthday and, for the last seven years (virtually this child’s whole life), she has been actively fighting this disease – chemo, radiation, surgeries, bone marrow transplants – it goes on and on. She has never been in remission.

When Alex was 4 years old, she decided that she would find a cure for childhood cancer – or at least raise the money to support someone else’s work in finding a cure. So she held a lemonade stand in her front yard. Her parents worried that she’d be disappointed with the few dollars she’d earn. But, in 2000, at her first lemonade stand, Alex raised more than $2,000! This was just the beginning.

In the 4 years since her first stand, Alex has raised over $190,000 for childhood cancer research. She has become an inspiration – a hero – to many. Alex and her lemonade stand have been featured on The Today Show, The CBS Early Show, CBS Evening News with Dan Rather, Time Magazine, People, USA Today, Philadelphia Inquirer, The John Walsh Show, Fox News, and many local and regional newspapers, television stations and magazines. Needless to say, she has touched and awakened many hearts.

Alex has a new dream. This year on June 12, there will be an “Alex’s Lemonade Stand” held in every state. Alex’s goal is to raise $1 million. There will be a significant amount of national media attention surrounding Alex’s Lemonade Stand day, including another appearance on the Today Show, CBS Early Show, Family Circle Magazine to name a few.

When Alex’s parents wrote to me several months ago and asked if I would host the Georgia stand, I did not hesitate. Of course I would do it…for Alex, because this is her dream. It struck me that most 8 year olds are dreaming about things like the pool opening, an upcoming baseball game, or whatever it is 8 year olds dream about. Alex, on the other hand, is dreaming about a cure for childhood cancer.

So, as overextended as I may feel, I know that I must hold Alex’s stand on June 12, and do it enthusiastically and with the pride in my heart that I feel for Alex and her family. I am sad to say that Alex’s disease has begun to progress over the last few months, and it is more important than ever that her dream is fulfilled – now.
So, I now need to turn my attention to our lemonade stand. Boy, could I use some help. Here’s what I need:

1. A visible place to hold the stand. I have a few ideas, but if anyone has any ideas and knows how I’d get permission to hold the stand at the suggested location, it would be a huge help.]
2. Volunteers to approach a grocery store, restaurant, Target store, Walmart or whomever to donate lemonade, ice and cups.
3. Volunteers to spread the word about the stand and encourage people to drop by on June 12.
4. Volunteers on June 12 to help the Connors run the stand
5. A stand – ideas for an eye-catching stand.

My goal for this stand is simple – it is really not about the money, although money to support research is very important. To me, it is all about showing this brave little girl and her family how much she is loved nationwide and to make her last dream come true. It is hard for me to reach out for help. I’m sorry as I know everyone is really busy. But if Alex’s story touches you and you have anything to offer in the way of help, please let me know.

To read more about Alex’s Lemonade Stand, go to www.alexslemonade.com. To follow Alex’s progress in her fight against childhood cancer, go to http://www.caringbridge.org/page/alexscott.

Love,
Kristin

Friday, April 30, 2004 12:32 AM CDT

Please keep lifting up the prayers for our little friend, Carter, and his entire family.

A friend emailed this to me today. It seems too profound not to share:

Subject: On Being a Mom
by Anna Quindlen

If not for the photographs, I might have a hard time believing they
ever existed. The pensive infant with the swipe of dark bangs and the
blackbutton eyes of a Raggedy Andy doll. The placid baby with the
yellow ringlets and the high piping voice. The sturdy toddler with the
lower lip that curled into an apostrophe above her chin.

ALL MY BABIES are gone now. I say this not in sorrow but in disbelief.
I take great satisfaction in what I have today: three almost-adults,
two taller than I am, one closing in fast. Three people who read the
same books I do and have learned not to be afraid of disagreeing with
me in their opinion of them, who sometimes tell vulgar jokes that make
me laugh until I choke and cry, who need razor blades and shower gel
and privacy, who want to keep their doors closed more than I like.
Who, miraculously, go to the bathroom, zip up their jackets and move
food from plate to mouth all by themselves. Like the trick soap I
bought for the bathroom with a rubber ducky at its center, the baby is
buried deep within each, barely discernible except through the
unreliable haze of the past.

Everything in all the books I once pored over is finished for me now.
Penelope Leach., T. Berry Brazelton., Dr. Spock. The ones on sibling
rivalry and sleeping through the night and early-childhood education,
all grown obsolete. Along with Goodnight Moon and Where the Wild
Things Are, they are battered, spotted, well used. But I suspect that
if you flipped the pages dust would rise like memories.

What those books taught me, finally, and what the women on the
playground taught me, and the well-meaning relations --what they
taught me was that they couldn't really teach me very much at all.

Raising children is presented at first as a true-false test, then
becomes multiple choice, until finally, far along, you realize that it
is an endless essay. No one knows anything. One child responds well to
positive reinforcement, another can be managed only with a stern voice
and a timeout.

One boy is toilet trained at 3, his brother at 2. When my first child
was born, parents were told to put baby to bed on his belly so that he
would not choke on his own spit-up. By the time my last arrived,
babies were put down on their backs because of research on sudden
infant death syndrome. To a new parent this ever-shifting certainty is
terrifying, and then soothing. Eventually you must learn to trust
yourself.
Eventually the research will follow.

I remember 15 years ago poring over one of Dr. Brazelton's wonderful
books on child development, in which he describes three different
sorts of infants: average, quiet, and active. I was looking for a
sub-quiet codicil for an 18-month-old who did not walk. Was there
something wrong with his fat little legs? Was there something wrong
with his tiny little mind? Was he developmentally delayed, physically
challenged? Was I insane? Last year he went to China. Next year he
goes to college. He can talk just fine. He can walk,too.

Every part of raising children is humbling, too. Believe me, mistakes
were made. They have all been enshrined in the
Remember-When-Mom-Did-Hall-of-Fame. The outbursts, the temper
tantrums, the bad language, mine, not theirs. The times the baby fell
off
the bed.
The times I arrived late for preschool pickup. The nightmare sleepover.
The horrible summer camp. The day when the youngest came barreling out
of the classroom with a 98 on her geography test, and I responded,
"What
did you get wrong?" (She insisted I included that.) The time I
ordered
food at the McDonald's drive-through speaker and then drove away
without picking it up from the window. (They all insisted I included
that.) I did not allow them to watch the Simpsons for the first two
seasons. What was I thinking?

But the biggest mistake I made is the one that most of us make while
doing this. I did not live in the moment enough. This is particularly
clear now that the moment is gone, captured only in photographs. There
is one picture of the three of them sitting in the grass on a quilt in
the shadow of the swing set on a summer day, ages 6, 4 and 1. And I
wish I could remember what we ate, and what we talked about, and how
they sounded, and how they looked when they slept that night. I wish I
had not been in such a hurry to get on to the next thing: dinner,
bath, book, bed. I wish I had treasured the doing a little more and
the getting it done a little less.

Even today I'm not sure what worked and what didn't, what was me and
what was simply life. When they were very small, I suppose I thought
someday they would become who they were because of what I'd done. Now
I suspect they simply grew into their true selves because they
demanded in a thousand ways that I back off and let them be.

The books said to be relaxed and I was often tense, matter-of-fact and
I was sometimes over the top. And look how it all turned out. I wound
up with the three people I like best in the world, who have done more
than anyone to excavate my essential humanity. That's what the books
never told me.

I was bound and determined to learn from the experts.

It just took me a while to figure out who the experts were.

Wednesday, April 28, 2004 1:48 PM CDT

I am sitting here today at my desk trying, trying, trying to work. But I can't. I can only stare at my computer screen. My mind won't let me think about work. I can't write the letters I need to write today. I can't make the phone calls I need to make. I suppose this is what happens when your heart is shattered.

We have been praying for our friend, Carter Martin, for a long time. We've been praying since his diagnosis a year ago, and praying even harder since his relapse in February (after only 3 weeks off treatment). Yesterday, the news wasn't good. For today, the cancer seems to be winning.

I have to say "for today" because I can't face that this disease will take another child from our midst. I have to hold on to the hope that God will heal our little friend's body. I do so for Scott and Leigh Ann and Candler, but I also do so for me. I love this family with all my heart, and I feel like this disease is suffocating me as it threatens to take Carter from us.

Please join me in prayer. I am begging God at this point. I'm trying to make all kinds of deals with Him. This suffering has to stop.

Love,
Kristin

Monday, April 19, 2004 8:37 PM CDT

There are so many things on my mind as I sit here to update our journal. I don't know where to start...

We had an incredible weekend at Camp Sunshine's Family Camp. This was the first time we'd been to Family Camp and virtually the first "event" like this we've participated in. Many of the families there were families with children currently undergoing treatment for cancer. There were others whose children have finished treatment. I'm not really sure where we fit into the mix -- which is why we've never participated in things like Camp Sunshine before. Because our situation with Brandon was "different" than what many families faced, we never felt like these things were for us. We didn't want to use resources that were better devoted to other families who were more in need (e.g. take a spot of a family with a child in treatment). We also didn't know how we'd be received by other families. In the world of childhood cancer, we have little to complain about. Our child never received chemotherapy, he never had surgery...thank you, God. We felt that our presence with our "favorable" circumstances might be difficult for other families, so we have stayed away.

But over the course of the last two years, we have come to know some pretty special people who have helped me deal with some of the difficult feelings - like not belonging or being welcome at these places/events. We have felt like we've straddled different worlds, not really fitting in any particular world, and I think I finally understand that that very fact has made it difficult for me to "heal" from the stress and anguish of the last two years. I am so thankful for Jane Hennessy, who has virtually embraced me and led me by the hand to these groups and events where I can meet and spend time with other families whose children have cancer. Still, we are mindful that we have had it much easier than many and we are sensitive to the needs of other families. We will always be the first to give up our spot to others. Yet in the midst of these families, I feel like I soak up their understanding, compassion, warmth and friendship like a sponge. In the midst of these new friends, I recognize a void that has existed in our lives as we've straddled the fence of two totally different worlds. I am touched by the journeys of these incredible people, I draw from their strength. I desperately want to offer support and help to those who are in the midst of incredible struggle. I don't know how to explain it. It just feels like such a RELIEF to finally be able to say, "our journey has not been as hard as many and we are thankful for our blessings, but it's been hard, nonetheless." We have been embraced by many families -- and I think I see that our favorable outcome fills some in the midst of difficult trials with hope.

For me, one of the most amazing aspects of the weekend was spending time with the volunteers. Many of these were young adults who are themselves cancer survivors. I had a chance to talk with two young women who were diagnosed as very young children. They don't remember their treatments, yet they live their lives guided by the deep lessons this disease brings to many who suffer at its hands. They are amazing women, and hearing of their experiences was so meaningful to me. I have often thought about the fact that I know Brandon will not remember what he has been through. I have wondered how we raise our children to absorb and live the deep, important lessons we've learned when they won't remember. These women gave me so much hope that it is possible to do that. They were so generous with their time and advice.

We also got to spend time with our friends, the Martins. Please keep them close in your prayers this week as it is a big one for them. Be sure to check on them at www.caringbridge.org/ga/cartermartin and offer needed words of encouragement.

As we look forward, we are busy preparing for Lauren's Run, a wonderful fun run for children held in honor of Lauren Zagoria and Lauren Kochman who both lost their battles with neuroblastoma. Lauren's Run will be on May 2 at the zoo. Please think about participating in this great, FUN event.

Brandon and I will be talking about Lauren's Run on Good Day Atlanta (FOX television) on Thursday, April 22 between 7:00 am and 8:00 am. We'll also be on Noonday on Channel 11 on Monday, April 26. I am hoping that Brandon will be nice and calm and well behaved on live television, but I can't make any promises! :) We'll also be on Z93 radio Sunday morning and in the Gwinnett Daily Post later this week.

Finally, I ask for your prayers for all our little buddies. There are so many that I hope I don't leave anyone out. In addition to praying for Carter, please pray for Shelby as she continues her battle against relapsed neuroblastoma. Please also say prayers for Chandler, Catie, Jake, John, Sydney, Will, Ava, Andrew, Alex, Nicklaus, Mitchell, Dustin, Taylor, Zack, Kendrie, Bridgett, Abby, Anna, Becca, Payton and all the other precious children fighting cancer.

Thanks for caring and for checking on us.
Love,
Kristin

Thursday, April 15, 2004 11:15 PM CDT

Tuesday, April 13, 2004 9:35 PM

Tonight has been filled with priceless moments – the kind you, as a parent, hope you’ll never forget. After an afternoon of wrestling, sword fighting, ball throwing, singing and dancing (we do a lot between the time we get home and dinner!), everyone was laughing and feeling happy. As we sat down to dinner, Brandon said, “I wuv you guys. I really do. I really do wuv you guys.” Melt my heart!

Then there was Ryan, quite the American Idol fan. He was very bummed out to hear that our favorite show had been bumped tonight, and he wanted to know the culprit. I explained that the President was going to be on television talking to all the people in our country about important things. He wanted to know if the President is more important than American Idol. Hmmmm…I contemplated this and then agreed that, yes, the President is probably more important. So at about 8:15, Ryan asked if we could pop popcorn. Pop popcorn???? At 8:15???? I told him no, of course we couldn’t – it was almost time to go to bed. He protested and told me that we HAD to pop popcorn for the PRESIDENT!!!!!!!! I think my child is the only 5 year old in America who wanted to settle in with his bowl of popcorn to watch the President’s speech.

This week has been far better than last week when the stomach flu swept through our house with a vengeance. We all got it – and on top of that, Ryan got strep. Needless to say, it was miserable here. Everyone was well by Easter, but my poor Mom, who had offered to do all the cooking, was sick in bed with it while we ate all her wonderful food and the boys hunted eggs at my parents’ house.

One small part of me was, in a strange kind of way, glad to see our family so widely stricken with this bug. It’s not that I wanted anyone to be miserable. It’s just that it gave me comfort with Brandon’s recent symptoms. The more identifiable symptoms are (i.e. they can be linked to a specific illness), the less likely they are to be signs of returning cancer. I really despise the fear that inherently lives within me now. I wish I could let go of it. It doesn’t grip me all the time, but when it hits, boy is it gut-wrenching.

We are anxiously anticipating this weekend when we’ll head to Family Weekend at Camp Sunshine. I have heard such wonderful things about the camp and I know the boys are going to have a ball. I’m really looking forward to the fellowship with other families.

We continue to ask for your vigorous prayers for some of our buddies. Please pray urgently for our friends Carter Martin and Shelby Prescott, both fighting relapse. Please pray for Chandler Booth, who has an important scan tomorrow. Please pray for John Kwasinski, that his upcoming scans will show considerable improvement. Please pray for Jake Rivers, that his treatment will continue to go well and he will transition nicely back to school. Please pray for Andrew Vassil, that he and his mom will return safely from their check up at St. Judes and the news will be encouraging. Please pray for Catie Wilkins, that her cancer cells will continue to die and will not reappear. Please pray for Will Hennessy, that he will remain in remission for good and eventually be declared “cured”. Please pray for Sydney, Nicklaus, Ryder, Alex, Becca, Mitchell, Dustin, Ava, Payton, Taylor and all the others battling this disease.

Thanks so much for caring and for checking on us.
Love,
Kristin

Tuesday, April 6, 2004 9:20 PM CDT

Well, I think I'm ready to declare the little scare we had yet another unnamed virus and move forward. Brandon was up all night last night throwing up. It's a sad state of affairs when you're glad to see your child vomiting. In my book, that means the fever is likely related to a virus and nothing worse. It still doesn't explain the leg pain, but that could be muscular and unrelated to the fever. At any rate, I'm feeling calm again and ready to let go of this one.

I know some people think I'm totally crazy for worrying about a little leg pain. Afterall, Brandon is an extremely active little guy, and he's going to have aches and pains as he grows. If I worry about every ache and pain, I'll be worrying constantly.

But my worries were not that his leg hurt. It was the combination of low grade fevers and unexplained leg pain. I know far too many kids whose relapse has manifested this way. So I worry about this combination. It's certainly not that I thought or think Brandon is relapsing, but that fear is everpresent. Sometimes it's buried deep, other times it's closer to the surface. But it never leaves completely. And fever and leg pain together, well, that just about makes me crazy.

Let's hope for a healthy Easter for our family and yours. Please keep praying for our friends - Carter, Jake, Shelby, John, Will, Sydney, Catie, Chandler, Andrew, Alex, Becca, Ava, Mitch, Nicklaus, Taylor, Payton and many others. Our hearts are really with the Prescotts right now as they have received tough news about Shelby's disease progressing. Please pray that the experimental chemo works for her.

Thanks for checking in.
Love,
Kristin

Sunday, April 4, 2004 9:50 PM CDT

As I sit here ready to type another entry in my journal, I don't know whether to laugh or cry. Should I laugh because I know I am a completely paranoid, crazy mother who would probably make up something to worry about if I had to (just kidding -- I wouldn't really!)??? Or should I cry because the reality of neuroblastoma is serious enough and the disease is cruel and unpredictable enough to keep its grips on the fear that lives in us parents for as long as we shall live?

Actually, we've had a great weekend. Notwithstanding that we all have been a bit down with colds, we enjoyed the beautiful sunshine and Easter festivities. After Ryan's soccer game on Saturday (another win for the Mustangs!), we went to our first ever event at Camp Sunshine -- the Easter Egg hunt. We had a ball, and I just couldn't believe the Camp Sunshine house. It is such a beautiful place, and even though we didn't know anyone there, we immediately felt like we were among friends. Today we spent most of the day hiding and finding over and over again all those plastic eggs we got yesterday.

At some point during the weekend, though, Brandon started complaining about pain in his right leg. He's had several incidents where he's grabbed his right thigh and cried out in pain. He can't really tell me exactly where it hurts ("It hurts anywhere, Mommy" - toddlerspeak for "everywhere" I think), and the pain isn't constant. So it's not like an injury, which wouldn't surprise me considering the vigor with which he plays (the "It's a Miracle" crew didn't call him "stunt baby" for nothing!).

When I got him out of bed from his nap today, I definitely thought he felt feverish -- you know, the kind where you know it's there but you're not alarmed enough to go get the thermometer. I have been assuming his low grade fevers this week have been related to the ear infections and cold virus he has had, and I really didn't think anything about it until it happened again -- he grabbed that leg and cried out in pain. He even wanted to get off the swing (WHAT?!) because his leg hurt.

That's when it happened. A terrifying sense of de ja vu came over me. The fever, the leg pain...are we back to July 2003 when our whole nightmare hit a new stage of intensity? Surely not. Surely I am just overreacting to nothing -- it's probably just a leg cramp, for heaven's sake.

I want to laugh at myself and say, "Now don't be silly. There's nothing wrong with Brandon that's not wrong with any other kid in America." But I can't. I can't help but feel that twinge of panic...and wonder "what if".

And so tonight, as I pray for all my little warrior friends, I'll include my own child and my own family in the list. Please God, please let my child be fine. Please let the biggest problem facing him today be that he has a neurotic mother who worries too much. I'll take leg cramps. I'll even be ok with an injury. But the "C" word, God, please don't let it be.

Please keep all our precious little friends in your prayers -- Carter, Jake, Will, John, Sydney, Chandler, Dustin, Ava, Roxie, Becca, Alex, Catie, Andrew, Mitch, Payton, Taylor and Nicklaus. And tonight, I ask for special prayers for our precious friend, Shelby Prescott. I was heartbroken on Friday to hear that her scans of last week showed progressing disease. Please pray that the doctors find a way to get the cancer under control and stop it once and for all. Please pray for Bruce and Faith, Shelby's parents. They are such wonderful, warm, special people. Please pray that they find strength in their journey and that many people reach out to them to help them along their way.

Love,
Kristin

Tuesday, March 30, 2004 12:31 AM CST

You know when you get a song in your head and you just can’t get it out? Josh Groban’s beautiful, soulful song, “You Raise Me Up” keeps running through mine:

When I am down and, oh my soul, so weary
When troubles come and my heart burdened be
Then, I am still and wait here in the silence
Until you come and sit a while with me

You raise me up, so I can stand on mountains
You raise me up, to walk on stormy seas
I am strong, when I am on your shoulders
You raise me up…to more than I can be

It’s fitting that this song would be in my head today. I am in the midst of the most incredible, and quite admittedly, baffling, experience. About a month ago, I met with the national Chairman of the Board of Directors of the American Cancer Society. Those of you who read this website know how passionate I feel about supporting childhood cancer and doing whatever I can to help these children. Well, when I met with the chairman of the board, I made a proposal for the ACS to step up their commitment to childhood cancer. I think I expected to either be laughed at or put off. But instead, I was totally embraced, and so were my ideas.

Yesterday and as a next step, I met with the Pres. of the American Cancer Society Foundation and the national Exec. VP of Strategic Direction. They are SERIOUS about a new initiative to benefit our children. I’m so humbled and almost speechless at the reception I have been given. What a great honor it has been to have the opportunity to discuss my ideas for curing childhood cancer with such accomplished individuals at the nation’s leading cancer-related nonprofit organization. And how exciting for our children and our families that the largest non-profit in the country with the #1 name recognition wants to continue these discussions and take them to the next level.

I suppose it is possible that nothing will come of this and that I will fail with this endeavor. But you know, I don’t think so. I keep coming back to Josh Groban’s song – all these precious kids, they raise me up…They raise me up to stand on mountains and to be more than I can be. To all of the families of these children, if any of you are reading this, please know how strong I am when I stand on your shoulders. You and your children are my inspiration, and this is for you.

Keep me and these gentlemen in your prayers so that we might further these ideas and eventually MAKE A DIFFERENCE in this fight. And of course, please remember all my dear friends, my source of inspiration, as well – Carter, Will, Jake, Sydney, John, Chandler, Shelby, Ava, Andrew, Dustin, Mitch, Nicklaus, Roxie, Catie, Payton, Taylor, Alex, Becca (on hospice care) and all the other little warriors battling cancer.

Love, Kristin

Sunday, March 21, 2004 9:27 PM CST

Well, we didn’t make it to church today, but I think God will forgive us. Sometimes, I think Sunday mornings are the best. As I surveyed the “damage” to our playroom after this particular Sunday morning, I am sure of it. Mardi Gras beads were thrown around the room, the floor was covered with balls used in one of our infamous ball fights, Hot Wheels cars laid near the track from the races…all in all it was one huge mess. And while a small part of me wondered when in the world the chaos that comes with having 2 small boys will end, most of me hoped the answer would be "never!" I felt enormously happy. I felt so happy to have 2 boys who are healthy and full of life. I felt happy to have the time to hang out with them, to laugh, to wrestle (where I steal lots of hugs and kisses without them suspecting my motives for such games!). Yes, I am sure these are the best of times. So I thanked God, not from a church pew, but from the doorway of my disastrous playroom. I am sure He heard me and approved of our Sunday morning choices.

Actually, we had an entire weekend of doing “nothing.” Mike is coaching Ryan’s soccer team, so after an early morning game (Ryan scored – man, was he proud!), we stayed at the park for several hours, throwing rocks into the Chattahoochee River, running around the playground, swinging so high we got stardust on our toes (Really!). It was just the best!

I hope those who read my update from last week and the comments of my dear friend, Jen, about those on the outside, did not misunderstand. I don't mean to alienate others by my words or sound ungrateful. Actually, I am enormously grateful for the love and compassion of all those who care -- whether they have children with cancer or not -- those are all "insiders" to me. I know that when Jen referred to "outsiders", she meant those who do not try to relate to her and her struggles, those who do not try to understand the complexity of her experiences, and those who do not respond with compassion. We have all experienced that response...whether our struggle is that we have children with cancer or our struggle is something else (afterall, we all have struggles of some sort). I think most people who read my words last week, especially those who know me, know what I mean. I was simply so grateful that Jen had the courage to express her true feelings about this, and her expression came at the perfect time for me.

I have been really struggling in parts of my life with the “outsiders” – NOT meaning those who do not have children with cancer, but meaning those who do not respond compassionately to the emotional complexity of our long - and continued - struggle. I have been so interested in what I’ve read in the guestbook on John Kwasinski’s website and also on the websites of so many other families. You know, you don’t just get over this experience, or really any other difficult struggle in life – THANK GOODNESS. Thank goodness we are changed by our struggles. Otherwise, they would be in vain. But it is hard when people expect more of you than you can give because they don’t understand the change. That’s where I was coming from.

Please continue to pray for all of our friends in the battle – Carter Martin, Will Hennessey, Jake Rivers, Catie Wilkins, Chandler Booth, Ava Kelly, Dustin Cobb, Alex Scott, Becca Lockler, Shelby Prescott, Andrew Vassil, Sydney Dungan, John Kwasinski, Ryder Ewing, Payton Bogert, Nicklaus West, and all the others.

Love, Kristin

Monday, March 15, 2004 11:04 PM CST

I am writing tonight with many mixed emotions, finding myself a bit unsure of what to verbalize and what to keep to myself. You see, I think we parents in this “world of childhood cancer” get pretty good at pretending. We pretend all is well when it really isn’t. We post happy updates on our children’s websites as we cry inside. We don't want to be vulnerable to opening up too much, and, anyway, it's easier for the rest of the world to read happy words. I know I’m not the only one who does this. Too many others have confided that they do it, too.

So tonight I wonder what to share, and how to articulate it all anyway. I’ll start by saying that the boys are doing great. We had a fun-filled week at Lake Lure, NC last week. My parents’ neighbors, John and Gail Williams, generously offered their lake house as a chance for us to get away, and it was just beautiful. We met my college roommate and dear friend, Lauranne, and her family there and just loved the time we had with them. Brandon could’ve spent all day every day throwing rocks into the lake, and Ryan loved digging for fossils and gemstones. On the other hand, Ryan didn’t think hiking was so cool – “It’s just walking”, he said, as he told me how “boring” he found the activity. But all in all, we had a great time, and it was really nice to get away. Thank you, John and Gail, for your generous and thoughtful gift. The house was incredible, but the gift of fun and rest was the best of all.

And while many who know of our long years of struggle are no doubt happy that we took some time to get away and recharge our batteries, that feeling is definitely not shared by all. I am really struggling with certain commitments, mostly work related. And here’s where the writing gets tricky. I think instead of elaborating, I will simply defer to the beautiful writing of my dear friend Jen Kwasinski. Jen’s son John was diagnosed with neuroblastoma as an infant, and Jen and I bonded long ago, like soul sisters, as our experiences have been similar in so many respects. Even where different, we seem to relate to one another virtually perfectly.

I almost laughed when I read Jen’s recent updates on John’s website (www.caringbridge.org/il/johnkwasinski) – not because Jen’s words weren’t eloquent and beautiful. I laughed when I read that, with her postings, she was trying to “feel out her level of insanity”. I don’t think I’ve ever met a MORE sane person than Jen. Me on the other hand, well, I might just qualify for insane at this point. Anyway, here’s what she wrote:
______________________________
(START JEN’S JOURNAL HERE)
“The aftermath of chemotherapy, is one to be noted. Unlike the aftermath of a tornado or other natural disaster, this aftermath can’t be kindly cleaned up and made to look and act like new. The very nature of chemotherapy is to kill rapidly dividing cells. For children, all cells are rapidly dividing, as growth is a cornerstone of children. Oftentimes the cure kills, and if the child is fortunate enough to survive the cure, the child is likely left with a host of “long-term effects.” These effects range from mild in nature to very severe and life-threatening. Both John’s heart and lungs have taken a beating, and while we have symptoms and progression under control with medication, the damage can not be undone. Once again parents of children with cancer are faced head on with fear and joy. Fear of what damage the cure might cause and joy that the cure might just buy one more day.

We continue to live life hoping for John’s complete healing of cancer. We also live life fearing the return and/or progression of the cancer. Every little “virus” signals the alarms and the fear comes to the surface with tenacity. We haven’t a clue what the future holds so for today and all the todays to come, we shall cherish the gift of another day that God has bestowed upon us.

I honestly don’t think MOST of the “outside” world has a clue how to deal with us. I know because I lived on the “outside” for many years. We are changed, we live knowing without a shadow of a doubt how precious life is and how fast the life of our very young child can ripped from our arms. We’ve seen it happen way too many times, and we fear the day it might be us. I never thought life could be so difficult yet so rewarding in the very same instant. I no longer relate much to those on the “outside” albeit I try to keep my mouth shut and listen to them tell me how thankful I should be, when they haven’t a clue how thankful I really am for living a life full of fear and joy. I forgive the people on the “outside” because they haven’t a clue of our life or what they do unto us.

I suspect each and every parent of a child with cancer has heard "You are so strong. I could never go through that." Honestly, if I had a penny for every time someone has said some form of the above, I’d be quite well to do. I’ve reflected over this statement for most of the week, trying to figure out the method behind the madness of it. I am far from a “strong” person. I lay awake at night on occasion, the utter silence engulfs me, and I break into tears. I cry for my son, for every child who was diagnosed before him, for every child in treatment, for every child yet to be diagnosed and I cry for all the parents who have lost their beautiful child to this wretched disease. I cry until my body can no longer form tears. Clearly this is not a prime example of a strong person.

I suspect the “strong” statement from above, is another prime example of my theory the outside world simply hasn’t clue how to deal with us. I do not believe God called upon me to be a mother of a child with cancer because I am strong. I do not believe God calls the qualified, but rather, God qualifies those who call upon him. For me, any ounce of strength I might have comes from the man above and from the love I have for my son.
We all love our children, but those on the “outside” haven’t a clue of the true depths of love, and the strength which can be gained by love alone.

(END JEN’S JOURNAL HERE)
_______________________________________

What words from the pen of my dear friend. All I can say is that I understand why so many on the “outside” can’t understand where I am – why I’m not “over it by now”, why I’m “different”, “distracted”, whatever the adjective of the day is. How many days, weeks or months am I allowed before I must "get back to normal"? Is 3 days ok, 3 weeks, 3 years too long? I suppose if I never return to normal as those on the outside view normal to be, I will face the consequences. I can only believe that with God leading my way and guiding my path, I will be well prepared, and I will stand with my head held high knowing that I live a meaningful life and make the best decisions I can along the way. What else matters, anyway?!?!

Please keep praying for our dear friend Carter Martin, for Jake, Sydney, Will, John, Andrew, Ava, Catie, Alex, Becca, Mitch, Payton, Dustin, Chandler, Shelby and all the other little warriors fighting cancer.

Love,
Kristin

Saturday, March 6, 2004 10:17 PM CST

Today was an extra special day. The Hennessy's, Will's family (Will has battled Ewing Sarcoma), held a Mass of Thanksgiving at their church today, followed by a wonderful bbq dinner. It was really such a special experience for us.

Will, a first grader at Queen of Angels, finished chemo in November. The Hennessy's friends asked them if they wanted a party to celebrate the end of treatment. Definitely not, they said. Perhaps you can only understand this if you've walked this path, but to me, their reaction makes perfect sense. In a strange way, it almost seems like celebrating the end of treatment with a party is like issuing a dare to the cancer. I certainly don't blame anyone who outwardly celebrates the end of treatment. What a wonderful day it is when your child no longer needs chemo - a day to be celebrated. But from so many of our friends who have come to this day, I have learned that it is often approached with a sense of cautious optimism, at best, and incredibly intense fear, at worst. For some, treatment is an assurance that they are fighting the cancer. When treatment ends, the fear is intensly present that the cancer will return.

So I think that what the Hennessys did by honoring their son and their family's journey by holding a Mass of Thanksgiving was just perfect. They are the most dear family, and we were so happy to be there with them to share in their joy, gratitude and even that pesky old fear that will be ever-present for all of us.

We also loved spending a little time with our friends, the Rivers. Jake, who will be 3 in May, has leukemia and has nearly finished up his first year of treatment in what will be a total of 3 years of treatment. Jake's parents, Elle and Brent, are also such warm and wonderful people, and I have come to love their family, too. We were so excited to meet little Miss Megan, Jake's 5 week old baby sister.

We also met another family, the Vassils. Their son, Andrew, is a second grader at Queen of Angles. He has an inoperable brain tumor. Please keep this family in your prayers as they are at a difficult place in their journey. Although I only met the Vassils for the first time tonight, I felt an immediate connection with them. Andrew's mom said something that really hit home for me. She said, "As soon as your child is diagnosed, it quickly comes to be about SO MUCH MORE than your own child. Right away, you feel pain for ALL THE CHILDREN who are suffering -- for any reason." I couldn't have expressed these sentiments any better.

As we left the church tonight, all I could think about was how completely grateful I feel to know these families and how honored I am to call them friends. These are the most REAL people you could ever know, and their friendship touches my soul. Sometimes the world of childhood cancer gets very lonely...even when your outcome is good. Some of us walk around feeling like we live on a different planet than those who surround us. There is something incredibly peaceful in knowing that you're in the midst of others who live with you on your planet.

Please keep Carter Martin and the Martin family urgently in your prayers. Also, please continue to pray for Jake, Will, Catie, John, Sydney, Dustin, Ava, Chandler, Becca, Alex, Shelby, Ryder, Mitchell and all the other precious children fighting cancer. And tonight I ask that you remember in your prayers all the siblings of these kids as their lives are so often turned upside down. They are unsung heroes and should be celebrated.
Love,
Kristin

Monday, March 1, 2004 9:00 PM EST

Just a quick update as the stomach bug has hit our house. Poor little Brandon is down and out in a big way. I hope this one leaves us as quickly as it descended upon us.

I want to thank everyone who stayed up to watch "It's a Miracle" on PAX television last night. Mike and I were a little nervous about it, truth be told. You know, it's a bit of a leap of faith when you trust others to tell your family's story. We hoped PAX would do it well, and we are pleased with the piece that aired. I choke back tears everytime I watch it. I don't know whether it's the miracle or what could have been that gets to me -- maybe a little of both. Needless to say, we are so thankful for Brandon's continued good health. What's a little ole stomach bug, anyway!?!

For those who didn't see the show, it will air again on either March 16 or March 19, this time at 11:00 p.m. We also taped it and will share our tape if you'd like to see it.

I have been hard at work on a HUGE initiative to someday cure our children of cancer....or at least to do my part in the fight. I had some absolutely incredible meetings last week, and I cannot believe what's really in the works and how quickly things have fallen into place. I know, I'm being vague. I just don't want to be premature with details. There's still too much to iron out. So until then, just know that God is really leading me. There's simply no way the doors would be opening without His hand.

I'm reading an incredible book right now by Bill Shore. He started an organization called "Share our Strength" back in the 1980s, and his group has raised over $100 million to fight poverty and hunger. His book is called "A Cathedral Within". There are so many amazingly profound points in this book, but one of the things he talks about is the "Guardian angel" principle. He theorizes that when you're truly called to do something, and you listen to that call, you have unexpected successes, and guardian angels step forward to help. That has definitely happened to me. I feel pretty lucky, to be honest, that I hear such a loud voice in my ear. I can imagine going through life and not really ever hearing such a loud "calling". It's really such an incredible feeling to hear it. I can't wait to tell you what's in store for our children. We're going to make progress against this monster that threatens and takes too many lives.

Well, I'd better get back to Brandon. Thanks again for all the wonderful emails of encouragement about the show. Your words are what assures us that telling our story is the right thing to do, and sometimes we really do need the assurance.

Please continue to pray for those we hold so close to our hearts -- Carter, Jake, Shelby, Sydney, Alex, Becca, Dustin, Catie, Ava, Ryder, Mitchell, John, Will, Chandler, Roxie and all the other little warriors fighting cancer.
Love,
Kristin

Monday, February 23, 2004 8:22 PM CST

I'm a bit nervous to make the announcement that Brandon's story will air on "IT'S A MIRACLE" this Sunday, February 29 at 10:00 p.m. on PAX television. I wish I could see the segment before it airs. That way, if it doesn't turn out well, I could just pretend it wasn't happening and no one would see it. But since I can't, I leave it to you. Tune in if you want to see it. We are hoping for the best.

Fortunately, I don't have much in the way of news to report from our house. The boys are doing great. Brandon is still slightly obsessed with "Finding Nemo" as he sat in the bath tonight with his Nemo fish yelling, "Nemo! Nemo! Nemo!" "My Dad! My Dad! My Dad!" I need to start keeping a journal with me so I can write down all the funny things that child says every day. He is a riot.

Not to be outdone by his younger brother, Ryan has had a few good ones lately. The best came Saturday night while we were having dinner with friends. Ryan was talking about how much he liked our friends' house. I said, "You should tell Mrs. Wright how pretty you think her house is" to which he responded, "No, you do it, Mommy." I said, "Really, Ryan. You should tell her." He said with a big grin on his face, "No. You do it woman!" I erupted with laughter, at which point he said, "Don't tell anyone I said that!"

We were treated to a special night on Friday with tickets to the Circus. Our buddies, the Hennessys, called and invited us to join them in Tom Glavine's suite Friday night. It was great fun, and especially awesome to be with our special friends. Will Hennessy is always in our prayers as he fought Ewing Sarcoma last year. Hopefully, his battle is over forever.

The Martins remain close to our hearts as Carter's battle remains tough. Please keep all of the Martins in your prayers. We also ask for prayers for Chandler, Catie, Jake, Roxie, Ava, Dustin, Shelby, John, Sydney, Becca, Alex and all the other children and families battling cancer.

Love,
Kristin

Friday, February 13, 2004 8:27 PM CST

I think without a doubt this has been one of the most difficult weeks I've ever endured. My heart is so heavy as I hear news from Scott and Leigh Ann Martin about Carter's condition.

While the tumor in Carter's skull was successfully removed on Tuesday, Carter has had a difficult week. The cancer is attacking powerfully and painfully. Leigh Ann and Scott are showing us their enormous strength, but I know they are so weary. They are tired and scared, and they are in such deep pain.

There are many, many friends, family and even strangers who share their pain. I have had difficulty choking back the tears all day every day as I pray for the Martins, reflect on their battle and struggle to figure out how to help them.

Yes, the world of childhood cancer is not a happy world. I have spent a lot of time this week, as I have prepared a speech I will deliver to 400 people tomorrow at a dinner/dance for CURE Childhood Cancer, thinking about this. I will talk tomorrow night about the faces of childhood cancer -- faces like Carter's and Brandon's and Shelby's and Sydney's and Jake's and Chandler's...I will ask those who listen to look into these precious faces even though it is hard, even though to do so disturbs our sense of security and order. In fact, it is sometimes hard not to get lost in the sadness of it all. But don't these children and their families deserve our look? Don't they deserve to know that their suffering is not in vain? That people are going to see their pain and NOT look away, but DO something about it to change it and END it?!

The struggles of the Martin family have taught me what may be one of the biggest and most important lessons of my life. It does not matter if a child's life is threatened by neuroblastoma, Ewing Sarcoma or any other particular type of cancer. They are all equally horrific. The course must change for all of these children. They must have more options. They must have the hope of a cure. So now, I simply have to figure out what I can do about it.

I have thought the last few weeks about how small I am...one small person in a big world. One person who cannot deliver a cure with my own 2 hands to these suffering families. Not such a profound thought, is it? Maybe not, but it's an extremely difficult reality for me to accept. If I'm honest, I'll admit that I feel a bit of despair. One of my dearest friends reminded me of the serenity prayer to help me out of my despair: God, grant me the serenity to accept the things I cannot change, the strength to change the things I can, and the wisdom to know the difference. I lift this prayer up several times a day these days. It's the only way I can stay ahead of the despair.

I am changing my running shoes. I am taking off the sprinting shoes and putting on the shoes I need to run a marathon. I still don't know what God's plan is for my life, and I am trying to maintain patience as it evolves, not an easy thing for me. But I do feel more confident than ever that my "life's work" will be devoted to helping ALL children with cancer, not just those with one particular type of cancer.

Please pray for Scott and Leigh Ann Martin, that they will find the incredible strength they need to get through the days ahead. Pray for their parents as I can imagine the heartbreak they feel in watching both their own children and their grandchildren suffer. Pray for Carter, that he will be relieved of his pain and that the chemo and radiation will attack the disease with vigor. Pray for Candler as the issues that sweet little boy is facing are just too great for any 9 year old to have to face. Pray for their friends, that we may find the words to comfort and the actions to help.

Please also remember so many other children and families in your prayers, especially Shelby, Jake, Sydney, Alex, Becca, Dustin, Chandler, Ava, Roxie, Ryder, Mitch, Will, John and so many more.
Love,
Kristin

Tuesday, February 10, 2004 9:46 PM CST

I'm so glad to report that Carter did well through his surgery today. The surgeon was able to remove the entire tumor from his skull, and it was not penetrating his brain. Thank you, God.

The Martins have a tough and long road ahead, but they are such amazing people...Scott, Leigh Ann, Candler, Carter, their parents and sisters. They are so blessed to have so many warm and caring friends too, who I hope can carry them through this when they are weary.

My love for this family is so deep. I think it is the unique bond formed between families touched by this terrible disease that brings me here, although I have known Scott for many years. I remember when Carter had his rotationplasty. Just like now, their family was so deep in my heart. I remember feeling like it was my own child who was enduring that surgery. I know Leigh Ann and Scott's pain has been deeper, but somehow I think all of our families share each others joys on the highest level and agonies on the lowest.

I spent much of the morning among Scott and Leigh Ann's friends and family, and what an incredibly special group. To Leigh Ann's mom, thank you for caring about MY child so deeply. Thank you for reading this. We love your family just as much. You are so special to us and we are praying that you will find the strength you need to see your beautiful daughter and her family through this.

I also had the great pleasure today of meeting Kim and Chandler Booth. Chandler is battling neuroblastoma. What a precious little guy. Kim and I have exchanged emails but never met face to face until today. Now Chandler and Kim and the Booth family will be in my daily prayers. Together we will all find our way through the chaos and heartache that childhood cancer brings to our lives.

Thank you for checking in. Please say prayers for the Martins as they have a long, tough road ahead. Please pray for Chandler, Shelby, Roxie, Alex, Sydney, Becca, Jake, Dustin, Ryder, Will, John, Mitch, Roxie, Ava and all the precious children fighting cancer.

Love, Kristin

MONDAY, FEBRUARY 9, 2004

Dear friends:
Our little friend, Carter Martin, will have surgery tomorrow at 10:00 am EST to remove the tumor in his skull. Please pray that the cells around the tumor will be weak cancer cells, as Scott and Leigh Ann have been told that there will be cells the surgeon will be unable to get, but this surgery will ease the pressure and discomfort that Carter is feeling. He is already having weakness on his left side due to the tumor. Carter will immediately begin radiation on that area, but will have to wait a few days (hopefully only a few) before beginning chemo on his spine. Pray that the cancer in the spine will not explode in that time.

The entire Martin family has not been out of my mind, heart or prayers in days. They have been through so much already, and I feel their anguish. I am begging God not to take this little life. Please pray for Carter's healing and for strength for the entire Martin family.

I have this entered above, but I just have to remind myself:

Hope is a thing with feathers
that perches in the soul
and sings a tune without any words
and never stops at all
- Emily Dickenson

SATURDAY, FEBRUARY 7, 2004
One of the most incredible and life-altering aspects of our journey with childhood cancer has been the friends we've made along the way. Some we've met through the hospital. Others we've met through our on-line community of families. Still others we've met through other friends. There's one special family, though, we knew long before our child's diagnosis, and long before their child's diagnosis...The Martin family.

I went to high school with Scott Martin too many years ago to recount. Early last year, I learned that Scott and Leigh Ann Martin's little boy, Carter, had been recently diagnosed with Ewing Sarcoma, bone cancer, in his leg. Ever since the day I got the call about Carter, I've followed his progress daily. Scott, Leigh Ann and I have talked about the difficulties and the blessings. We've shared prayers and tears. I've written here about Carter and asked for prayers for him. Our family celebrated for the whole Martin family when Carter finished his treatment in December.

Late last night, I got a call I wish had never come. I learned that Carter's cancer has returned. I know the Martins are devastated and I and hundreds of others share in their grief tonight. I suspect there have been more than a few tears shed across the country about this news. Please storm the heavens with prayers for this precious family. They are weary. They need our love.

Now that my boys are in bed, I can let the tears I've been choking back flow freely. I am so sad and so ANGRY. Why is this happening?! WHY? When does it stop? I feel so desperate to do something to stop this madness. I hate this disease.

There are so many who need our prayers, but tonight, my heart is with the Martins. Please keep them in your prayers.
www.caringbridge.org/ga/cartermartin

Love,
Kristin

Friday, January 23, 2004 9:42 PM EST

After finally getting the boys to bed, I just had to come and report perhaps the funniest thing I've seen in my entire life. Ryan, exhausted after a long week and a late night, climbed in bed, and Brandon climbed up after him to give him hugs. All of a sudden, Brandon broke out into a spontaneous rendition of Barney's "I love you, you love me, we're a happy family, with a great big hug (HUGS RYAN!) and a kiss from me to you (spits binky out and leans over and kisses Ryan on the top of his head) won't you say you love me too!" Ryan and I are just about doubled over with laughter, and Brandon looks at us like we've clearly lost our minds. And he says, "Love me too, Ry Ry??" That was it, we become hysterical! Brandon has no idea WHAT is so funny! Perhaps we aren't getting it, he must be thinking, so he breaks out into a LOUDER version of the song! It was so funny! I only WISH the video camera had been rolling to capture that.

Life is good at our house. The boys are so much fun. They are happy and healthy. No cares...

Mike and I are trying to carry on, resuming our focus at work, maintaining our focus on our family and, at the same time, trying to carry out our greater purpose and get a few hours of sleep in there sometime, too. We're so incredibly grateful that we've had some people come forward to help us with Lunch for Life -- an advertising agency is helping to put together fliers and leave behind materials for businesses and important things like that and we're hoping to find a printer who can help us print our materials. I admit that I'm totally overwhelmed as I think of hitting the pavement virtually all alone to try to get businesses behind our children. I'm just hoping that one by one, people will be touched enough by what we're doing to want to help. But if not, I'll carry on. It just might take a little longer. I'm praying for endurance as I'm in it for the long haul. I'm feeling a bit weary these days as it's been a long road, but I feel a bit like we've been walking down the dirt road, and now it's time to hit the 6 lane interstate. So I need to tune my car and fill up with gas. There's work to be done.

We spent most of last weekend filming for the "It's a Miracle" show that will air on the PAX network. It was a really interesting experience. The director and crew could not have been nicer and more pleasant to work with. We are so grateful for their patience and the care they took with us. I am really nervous to see this as I have no idea how it will turn out. It will air on PAX on February 29 at 10 p.m. and March 19 at 11 p.m. I'm hoping for the best.

Please continue to pray for all our friends -- Sydney, John, Carter, Shelby, Will, Jake, Dustin, Roxie, Ryder, Chandler, Ava, Alex and so many more. Also, please say a prayer for all the families participating in CURE's bereavment weekend. I know many of them, and it will be hard. I'm praying they'll find comfort in being together.

Until next time...
Love,
Kristin

Tuesday, January 13, 2004 10:24 PM EST

We are counting our blessings today, as we do so frequently. The boys are doing great. Brandon continues to be hilarious and seems to finally be getting over his obsession with Lilo & Stitch. He's turned his attention now to "Nemo". Whew. It's a much better movie. He was playing in the bathtub tonight with one of his toy fish, and he was saying "I have to find my son!" It took me a minute to figure out what he was talking about, but once I did, I cracked up...and so did Ryan.

Ryan is also doing great. He's so big now, insisting that he will just DIE if we don't let him have a Playstation! Oh PLEASE!!!!

We continue to work so hard to push forward with Lunch for Life. The wonderful story in this month's Inside Gwinnett (www.insidegwinnett.com) has really created a lot of interest in our community, and we are so grateful for this. Here's a little glimpse of why...

We were approached in late November by a production company in Los Angeles about a show that airs on the PAX cable network called "It's a Miracle". It's hosted by Roma Downey from "Touched By An Angel". They will be airing Brandon's story on their show, and they are coming here to film with us on Sunday and Monday.

I have spent many hours talking with the show's producer, and the primary reason we have agreed to participate in the show is that she seems very in tune with the fact that our "miracle" did not occur on November 10 with the news of the disappearance of Brandon's tumor. Our miracle really began with Lauren's Run and Lunch for Life and then culminated in one "super miracle" with the incredible news. The show will tell this bigger story, including our work to further research funding. We have learned that a lot of the media stuff is a big leap of faith -- that is, you tell your story and HOPE they retell it in a way that is honest and true. Sometimes it turns out better than others. For us, it's meant that sometimes the bigger and more common story of pediatric cancer is told, and sometimes it isn't. Sometimes the Lunch for Life story is told, and sometimes it isn't. We're trying our best, but we don't have control over the end product. We certainly hope the "It's a Miracle" show will tell our story truthfully and respectfully.

Today, the producer pre-interviewed the doctors in San Francisco. She mentioned to me tonight that one of them was talking about how atypical our result was and how we must enjoy every birthday and every Christmas because it is entirely possible Brandon's cancer could return at any time. While I knew this in my head, I didn't feel it in my heart. Perhaps the denial had set back in. But I was kind of enjoying that. Tonight, the wind was kicked out of me with these comments. While I know we won't live our lives in fear, I realize it will always be there. There will never be true peace about this.

Maybe tonight, I'd better just let go of this -- get to bed at a reasonable time and wake up tomorrow to a new day...a day with hope and promise. Tomorrow I will continue to work hard on Lunch for Life. I know I have to for all the precious children, including my own.

Until next time...

Love, Kristin

Sunday, January 4, 2004 11:49 PM CST

Happy New Year!

Isn't it a wonderful thing that each year, we get to start over?! It strikes me how important it is to have this time of renewal each year, to be able to close the book on a chapter that's been difficult and say, "this year will be better."

After an incredibly difficult 2003, and 2002, and 2001, we are hopeful that 2004 will indeed be better. We are hoping that this year brings peace to our lives. We feel that we need a peaceful year to recharge our over-taxed batteries. It's certainly not to say that our experiences with Brandon’s cancer will ever be "over". But we look forward to living in something other than crisis mode…It's been a long time.

I also close the book on 2003 and look to 2004 with great hope that we will find doors continuing to open and allowing us to spread the word that children with cancer need our help. After working intensely in the last months of 2003 on the "Lunch for Life" effort, I have to admit that the holidays forced me to step back and let go of this, if even for just a short time. I think I was completely exhausted but unable to stop. So the holidays stopped me. And I'm so grateful for the break – for the chance to just live in the moment with our family, have some fun, get some rest, and really reflect on what I can do to make an impact and advance research for cures. This coming week feels like a chance to start fresh. As I have sat at the computer tonight checking on all of "my kids," I know how important it is not to give up on this effort. So I look ahead with great hope and faith that the doors will open as the coming year holds so much promise that I can do my part to get us closer to answers for so many of these children and their families.

We had a wonderful Christmas this year, although it was different than most – in so many ways. To me, Christmas has always been such a big family celebration. This year, we were not surrounded by extended family as in past years, but celebrated the day in our own house, just the 4 of us. It was really special even though quiet. After a visit from the "real Santa" on Christmas Eve, the boys were so excited to wake up Christmas morning. And although it was just the 4 of us, we just really enjoyed being a family and having special time together. Maybe Mike and I needed the quiet of a small Christmas day.

We left the day after Christmas for Jefferson City, MO where we spent a nice week with Mike's family. The boys had a ball with their cousins, and Brandon entertained everyone all week. That child is SO funny! He is such a character, and he cracked everyone up doing the "hokey pokey" with Elmo, dancing, wrestling the "big boys", eating everything in sight and coming out with hilarious phrases…there's just something funny about a 2 year old screaming, "COME ON! COME ON! YOU GOTTA SEE THIS GUYS!" And while everyone continues to watch Brandon with some level of amazement, and warn us that we're in BIG trouble, I look at both of our boys with so much pride and joy in my heart. They are wonderful, even when Brandon is throwing a tantrum, even when Ryan won't eat his pancakes because I cut them BEFORE he put the syrup on, even when Brandon won't drink his juice because I put it in the wrong cup, they're still wonderful. I am so thankful for every single day with them. I'm thankful that Brandon is well and thinks he's big enough to play Ryan's Gameboy. I'm thankful that he has so much spark and that he usually runs around with the biggest grin on his face, even IF that grin is because he just climbed on top of the refrigerator to find the hidden Starburst. You may think I'm crazy, and I admit to it. But I'm just so happy to have my boys here and healthy.

So with that, we welcome in the new year. We hope it is peaceful and productive. We hope that we will continue to live with all the lessons of the past years deep in our hearts and we hope these lessons will be reflected in our actions every single day.

Thank you for continuing to check on us. We ask that you continue to pray for our buddies: Sydney (who continues to improve following her stem cell transplant), John (who faces scans on Tuesday), Carter and Will (who have both finished chemo and have had clean scans), Jake, Shelby, Dustin, Payton, Roxie, Cassandra and so many other little warriors and their families.

Much love,
Kristin, Mike, Ryan and Brandon

Saturday, December 13, 2003 10:35 PM EST

I know it's been a long time since I've posted an update. Brandon is still battling the flu, and Mike and I are battling the never ending sleep deprivation along with trying to juggle work, a sick child and a well child with lots of Christmas activities to attend. Along with all of the Christmas planning, i.e. shopping, wrapping, baking, Christmas card writing, etc., it's been a busy time.

But, really, that's not why I haven't updated. I just haven't been able to sit down at this computer and type. I know it's pretty unbelievable to think that I would ever be at a loss for words, but it's happened. Why, and why now? Well, I can only guess. When we first returned from San Francisco and were being called on to talk about our “miracle”, it was ok and not really a difficult thing for us to do. Afterall, over and over again, we were being asked to tell about the happy ending to our long journey. But we weren't having to recount the whole journey itself. Then it happened. One day about two weeks after we returned, I was doing a telephone interview for an hour long radio show, and the interviewer kept going back further and further until eventually, we had revisited the entire two year journey. It was really difficult to relive the whole experience. As the next few weeks went by, I was asked again and again to tell the whole story. While everyone around us supposed we were in the midst of celebration, where we should have been, I felt like the walls were closing in. I realized that doing all of this talking, even though for a good reason, was actually very traumatic for me. So I realized I had to step away from it all for a while, and that is what I've tried to do, at least to the extent I can.

For some reason, it has become difficult for me to go back and read the newspaper articles, past journal entries and even some of the touching emails I received in the past. I can't get through any of it without tears. I have become just one big bundle of emotions. I joke that I cry now with the McDonald's commercials. You know the ones – with Ronald McDonald and the little kids??? You mean those don't make you cry?! I know, I know…I'm just pathetic! :)

Last week, I had the incredible honor of traveling to Los Angeles to visit City of Hope Medical Center. I got to meet Dr. Jensen, one of the country's leading neuroblastoma researchers and the person wholly responsible for getting us into the hands of the doctors in San Francisco, which is where I believe we needed to be. Dr. Jensen did a presentation for me about his research, the incredible promise it holds, not just for neuroblastoma patients, but also for leukemia, lymphoma and brain tumor patients, both young and old. I also believe that the answers he has found and will continue to find will one day have an enormous impact on the way we approach both cancer for children and adults as well as other diseases.

That said, being at City of Hope, an incredible place in its own right, and meeting Dr. Jensen and his colleagues, including the president of the hospital, was more than just a moving experience. I truly felt that I was in the midst of real "healers", and although we've been around a lot of doctors in the past two years, nothing has compared to my experience last week. I left City of Hope not just hoping beyond hope, but truly believing that the answers are within reach.

I came back from that trip wanting to reach out to every parent I know, and even those I don't, of children with cancer and tell them to hang on. I wanted to tell them to do whatever they have to do sustain their children until we can fund this research and the answers evolve into real life treatment options. But I was overcome by the cruel reality that some of these children won't be able to hang on. And that just crushes me. So my emotions are raw as I know I have to continue to try to move the mountain for the sake of these children and their families.

But sometimes moving a mountain is hard. I am thankful and humbled that in the midst of those times when the mountain feels too heavy and I am too tired, something comes our way to encourage me and keep me going. Of course, I feel that this is very deliberate. The most exciting thing that occurred this week is that the Childhood Neuroblastoma Cancer Foundation was named as a recipient of the CIBC Miracle Day that was held on Dec. 3. On this single day, CIBC donates its commissions to selected children's charities. Last year alone, it donated over $15 million to 300 or so children's charities. We don't know what size donation we will receive, but we are really excited about our selection as a recipient. We think we were nominated by a New York stockbroker who was touched by our Lunch for Life story.

Many other things are happening, as well. During one of the radio interviews I did, we receieved a telephone call from a UGA student who is treasurer of a big service fraternity. They have the most successful fundraising campaign on a college campus in the country for Relay for Life. They will likely adopt Lunch for Life as a fundraiser and have told us that they will dedicate the same level of energy for our cause as they do for Relay for Life. I'm going to make a presentation to their chapter in January or February. The UGA law school might also get behind us. Additionally, Bruce Prescott (Shelby's dad) and I will make a presentation to all of the social workers/counselors in the Gwinnett County school system at their March meeting. These are the people who decide what fundraisers to support. We are hopeful they will find ours worthy. We certainly have a long way to go to reach our goals, but I think 2004 will be a big year for our effort as we refine it and develop a more organized plan for a national campaign.

There are many other things on the horizon as well. One of the most incredible responses to our story has come from a mom of a friend of Ryan's at his school. While she and I have never met, she reached out to us when she first learned of our circumstances, offering to use her talents as a professional photographer to take a family portrait. It was one of the most thoughtful things anyone has ever done for us. She's been so touched by Brandon's miracle and our cause that I am now working with her to develop a program where she, and maybe even other photographers, do this for families of children with cancer. I think this is just awesome, and I know it will be one of the most meaningful things for so many families. Her response to our story has really touched my heart and made me feel even more confident that God has a purpose for me and that He is leading me to others who, with me, will help make a difference.

Putting all of that aside, Mike and I are really trying to live in the moment and make the most of this holiday season, and really, each day. Ryan woke up Thanksgiving morning excitedly asking if we could get the Christmas decorations out and up. I gladly complied with his request. We spent the next few days decorating, making a gingerbread house, and just getting in the spirit. I look at our Christmas tree every single day and reflect on what it's all about. I am working hard to eliminate things from my "to do" list so that I will not get lost in all that needs to be done rather than spending time creating precious memories with my boys. I am trying hard to make this more than just an aspiration and to stay focused on what matters in the end. Sometimes the demands on our time are incredible, and sometimes I will fail and will make the wrong choices. But there's no doubt that I'm at least more aware that each decision is a CHOICE, and goodness knows, I'm trying to choose well.

We celebrate with our friends, the Martins and the Hennessys, as Carter and Will have finished their chemo and their scans are clean. We are so glad that this part of their journey is over, and we hope they will have a peaceful year. We continue to keep Sydney Dungan in our constant thoughts and prayers as her struggle continues through her stem cell transplant. We also ask that you keep our other buddies in your prayers -- John, Jake, Mitchell, Ryder, Roxie, Payton, Shelby, Dustin and all the others who continue to fight.

Thanks for checking on us, and happy holidays to all.
Love,
Kristin, Mike, Ryan and Brandon

Thursday, November 20, 2003 11:09 PM CST

As things settle down a bit and Mike and I return to work, I realize that we have begun the process of re-learning how to live beyond “crisis mode” and re-defining “normal.” It’s strange and even a bit surreal to look back on all that has happened and to let go of the fear and worry we have come to know. I suspect that we will always experience what I call the “byproducts” of neuroblastoma – the irrational fears and worry – to some degree. But the weight of the world has been lifted off of our shoulders, and now we have to remember how to walk like we did before.

Well, actually, if we’re going to be honest, I don’t really WANT to remember how I walked before. That’s part of the “adjustment” I suppose. How do you take what’s happened and put it in its place. What IS its place, anyway? I’ve been doing a lot of thinking about this and, while I don’t have the answers, I do have some ideas.

When I look back, I think that, for me, this past spring was one of the lowest points of our journey. I remember feeling totally despondent after Brandon’s March MRI. Those of you who know the details of what happened with the lost scans, lost records, mistaken results and letter exchanges know what I mean. But it was significant that this experience fell on the heels of the Boston debacle with the previous MRI results. I remember times of just sitting in silence, crying inside because I felt like I could not get anyone to pay attention to our child. I literally had stayed up virtually all night every night for weeks, reading, searching, trying to get Brandon into skilled and caring hands. We were so incredibly let down by the “experts”. This was followed so close in time by the March MRI chaos, and I remember feeling hopeless and lost.

In the midst of this, I was driving to work one morning and, like it often did after I cheerfully delivered the boys to their destinations, a wave of grief and fear came over me. Just then, Mark Schultz’ song, “He’s My Son” came on the radio. This beautiful song was written for a family battling to save their son in his fight against leukemia. It talks of a mother who’s tired and scared as she battles for her son’s life. The song cries out a prayer to God: “Can You hear me? Am I getting through tonight? Can you see him? Can you make him feel all right? If You can hear me, let me take his place somehow. See he’s not just anyone, he’s my son.” And while I listened to the song, I just cried and cried. I was so mad at God. I was mad because so many children are suffering and dying. I was mad because He wasn’t LISTENING to me! I was doing everything I could for Brandon, and He was letting me down, along with the entire medical community.

Or was He? All of a sudden, I realized that maybe He was hearing me, and maybe I was getting through to Him. But maybe the problem was that I wasn’t hearing Him, and He wasn’t getting through to me. I had the weight of the world on my shoulders, and I was holding onto it with all my might. I felt like if I read enough, talked to enough doctors, stayed up late enough, worried enough, surely I would earn a good outcome for my child. I realized in that moment that that just wasn’t enough. So I cried and gave up, reluctantly I might add, and told God that I just couldn’t do it on my own any longer. I couldn’t make the enormous decisions we faced regarding Brandon’s care and what to do. I turned it over because I felt like I had no other choice. Mine was not a great, strong faith as some would like to think. It was actually very shaken and unsteady. But I simply had no choice.

I know now that I wouldn’t have heard God if He’d been screaming in my ear. I absolutely wasn’t listening. There was simply no way I was surrendering control of the one thing that matters to me most in this world – my children. So God gently or, in some instances, not so gently, showed me that we just weren’t going to get anywhere doing this my way. Again, my faith was reluctant. I was forced to have faith because there was no alternative, and I knew it.

That was the single most profound moment I’ve ever had. That same afternoon, I got a call from our family friend inquiring about Lauren’s Run. And as many of you know, I believe that call set in motion all the things we needed to care for our child. Lauren’s Run led to Dr. Jensen, Dr. Jensen led to the doctors in San Francisco, and those doctors led to a PLAN. In the midst of this, Mark Dungan entered our lives and Lunch for Life was launched. This incredible effort has caused us to share our story with so many others, something we had not done in two years of living with the nightmare. Sharing our story led to the media coverage surrounding our miracle, and the media coverage HOPEFULLY leads to more research dollars for all of the children who continue to suffer. Is it as clear to you as it is to me????

Lunch for Life has been an incredibly profound event for me in so many ways. In addition to raising a lot of money for research, a task that is important in and of itself, Lunch for Life has been an absolutely defining effort for me. One day in the middle of October, in the midst of Lunch for Life, I had another one of those significant moments as I drove to work (what is it about I-85???). I heard the new Mercy Me song, “Word of God Speak”. It says, “I’m finding myself, in the midst of You, and the funny thing is, it’s ok. The last thing I need is to be heard, but to hear what You would say. Word of God speak. Would you pour down like rain? Washing my eyes to see Your Majesty. To be still and know that You’re in this place. Please let me stay and rest in Your holiness. Word of God speak.” I wrote to Gray, our minister, about it when I got to work:

____________________________________________________________
This song reminded me of one of your sermons. It was before Christmas last year and the topic was the importance of the Sabbath. You were talking about how crazy life is and how busy we are. I remember that you made the point that when we’re so busy with life that we never stop running and we’re never quiet, we can’t hear what God is saying to us. The song says “To be still and know that You’re in this place, please let me stay and rest in Your holiness, word of God speak.” To be still – stay and rest in your holiness. Wow, that’s so powerful to me. We can’t hear what He’s telling us, we can’t follow his direction unless we stop and listen.

When I think about it, Gray, I think that this song really speaks about what’s been happening in my life. The song says, “ I’m finding myself in the midst of You, beyond the music, beyond the noise. All that I need is to be with You and in the quiet hear Your voice.” I have really felt God speaking to my heart. He has filled my heart with passion to fight for these children plagued by cancer. Their faces are etched in my heart, and I can’t sleep, I want so badly to do something for these children. I feel like God has given me Lunch for Life as a vehicle to do what He’s telling me to do. It’s weird, Gray. I’ve never felt so “called” to do anything in my entire life. Is it because I finally stopped, asked for guidance and stayed quiet until He spoke?

I got an email the yesterday day from a woman who grew up around the corner from me. She was/is friends with my oldest sister, and I can’t recall ever having a real conversation with her. I haven’t seen her in years. She apparently has been following Brandon’s website. Her email said “I truly believe that this is your ministry and you will never know the depth of how much your actions have enriched the lives of others, AND changed the treatment, and progress in beating Neuroblastoma. “ There’s no way Lunch for Life would be doing what it’s doing but for God. His fingerprints are all over it. And I’m proud and honored that He’s chosen me to fight for these precious, beautiful children.
____________________________________________________________

And so as we prepared to go forward with Brandon’s surgery, I feel like many things were happening in my life that were defining. I don’t know why we were blessed with such a miracle. But I do believe that God is using it to do good. I know from the hundreds of emails I’ve received that God is using Brandon to touch and, in some case, change hearts. And hopefully, the media interest will result in increased donations to Lunch for Life. I just believe that this all happened for a reason, and all the pieces are totally and completely connected. I simply can come to no other conclusion.

When I look back over all of this, I conclude that I simply don’t WANT to return to life as we knew it before all of this happened even if we could. I certainly don’t want to continue to live in fear, but I also don’t want to forget a single lesson or how it feels to know, I mean REALLY know, that I am in the midst of God, “beyond the music, beyond the noise.” I hope that we have not just learned important lessons, but that we truly have been transformed by them.

While I hope everyone will continue to pray for all of our friends, Will, Carter, Dustin, Roxie, Alex, Jake, John, Mitch, Payton, Ryder, Shelby and all the other precious children, I ask for vigorous prayers for little Sydney Dungan who will have her stem cell transplant next week. So as we all celebrate Thanksgiving, please keep this incredible family in your prayers as they will be going through a terribly difficult and terrifying time.

Love,
Kristin

Saturday, November 15, 2003 2:44 PM CST

To say that the days since our return from San Francisco have been overwhelming is an understatement. We were stunned to see our children’s picture and the story of Brandon’s “miracle” on the FRONT PAGE of the Atlanta Journal Constitution. What a wonderful statement it makes about our paper that it would be willing to run something like this front and center. The reporter, Lynne Anderson, of whom we’ve grown so fond, did an incredible job capturing our journey, including the agony of the last two years, and the overpowering emotion of the last minute news that we received. We are so grateful to Lynne for doing this so well. We know that her heart was truly touched and she put such care into telling our “story”.

I put the word “story” in quotes because, of course, to us, this is not a “story.” It’s our child. It’s our lives. There really are no words to describe what it feels like when you learn in an instant that two years of agony and utter terror are over. There are no words to describe what it feels like to hold onto your child and know that his body is free from cancer. There are no words to describe what it feels like, after two years of climbing the highest mountain in search of information in order to make impossible decisions, to know that this decision making is over. I have tears in my eyes and a lump in my throat as I type and reflect on what the last two years have been. I could never put this “story” into words because it simply isn’t a story.

Yet so many others have heard our news. My goodness. We never dreamed that this would be all over the television (including CNN!!!!) and radio news. We never dreamed that people we’ve never met would be weeping over our good news. We never dreamed so many hearts would be touched and so many people would find inspiration in our journey. What an incredible blessing that is. We are so humbled to watch God work with our circumstances.

We also never dreamed that people would be debating whether or not what happened in Brandon’s little body is truly a “miracle.” To us, there’s no doubt. Of course it is a miracle. Our child was on the eve of delicate and scary surgery. His surgery was going to take 8 hours – 8 hours of anesthesia, 8 hours of working inside his little body. He was spared this at the last minute. He was spared the painful recovery. He was spared any complications. The surgery was scheduled. Everything was lined up. We were signing the consents. How in the world was the discovery that his tumor was gone on the eve of this surgery anything BUT a miracle?!

I believe that most people who hear our news are rejoicing with us. Most people are lifted up and inspired. It is a surprise to me that some people want to debate whether a miracle really occurred. It is a surprise to me to hear that some, particularly in the children’s hospitals in Atlanta, are criticizing us as parents for going to doctors out of town and for being prepared to put our child through surgery. I have been urged to ignore this negativity and I am largely doing this. But I guess I want to address it because I see a tremendous lesson in all of it. I know that in the past I have heard stories and been quick to offer my opinion, as uninformed as I was. I think that in the future, I’ll be more mindful of how hurtful this can be. To those who criticize our decisions, I say that you have not walked in our shoes and you do not know the whole story. You have not laid awake at night wondering if your child will graduate from high school. You have not agonized over picture proofs, wondering if you should buy them all because, if something happened, you know you would want them. I know in my heart that I have fought with all my might for my child. Wouldn’t you do the same?

As for the “miracle” that has occurred, it makes not one shred of difference to me whether someone somewhere can come up with some scientific explanation for what happened. I know in my heart that we NEVER would have been prepared to send our CHILD into this kind of surgery if anyone thought there was any chance at this point in time that his tumor would vanish. To think otherwise makes no sense whatsoever.

To the majority who have responded to us with such love and compassion, we thank you. We have seen a glimpse of how much our child is loved, and that completely fills our hearts. To those who have cried tears of joy for our family, your tears are so precious to us.

We ask you, please, to honor our miracle now by helping us help all of the other children and families who are suffering. These are our friends, and we love these children. It is hard for us to rejoice in our miracle knowing the level of suffering that our friends continue to endure. Please help me with Lunch for Life. Please! Please have a “Lunch for Life” day or week at your office in honor of Brandon and these other children. Please ask your employer to donate to “Lunch for Life”. Please spread the word and ask your friends and family to do the same. Please do it so that other families will receive miracles. Please . . . it is my purpose but I cannot do it alone.

Finally, please pray for our friends Carter, Jake, Will, Mitchell, Roxie, Sydney, John, Payton, Shelby, Ryder, Dalton....and ALL the others (there are so many!).
Love to you all,
Kristin, Mike, Ryan and Brandon

Monday, November 10, 2003 10:10 PM, Pacific Time

DO YOU BELIEVE IN MIRACLES?????

Today was nothing less than a true miracle. While we spent yesterday in the valleys, today ended on the highest of peaks.

Brandon's MRI was not just good...it was remarkable. HIS TUMOR IS GONE!!!! I know, you can't believe it?! How can it be gone??? There's no answer to this question other than the power of prayer. There's no science that can explain how his tumor was there at the end of July when scans were done but GONE just 3 short months later, after remaining stable for nearly 2 years. It shouldn't happen. In fact, we were told it CAN'T happen...yet it HAS happened. All that remains is fatty tissue....non life-threatening fatty tissue.

There are no words to describe how Mike and I feel about the fact that the scan done on the eve of Brandon's surgery, the scan done to give the surgeon a better idea of what vertebrae and nerves are involved, is suddenly GONE. You must be thinking there's been some mistake. For once, I'm confident there's been no mistake at all. We've just received a miracle, the greatest gift life has ever given us.

In addition to this incredible news, we were told that with this spontaneous regression and DISAPPEARANCE of Brandon's tumor, he will need only one more round of follow-up scans -- in 18 months to 2 years!!!! WOW!

As the news begins to sink in, I can do nothing but utter prayers of thanks. THANK YOU GOD for miraculously healing my baby's little body. THANK YOU GOD for giving us the wisdom (if that's what it was) to go against the recommendations to proceed with this surgery a year ago. THANK YOU GOD for giving these doctors the foresight to do just one more scan. THANK YOU GOD for listening to the prayers of so many who love our beautiful little boy...THANK YOU GOD!

It's incredible to know that we will be able to return home tomorrow and that we will be among family and friends when Brandon was supposed to be in the midst of very delicate and scary surgery. THANK YOU GOD!

We will crash, no doubt, after the emotional roller coaster of the last 2 years. While we are so utterly relieved (and "relieved" is such an inadequate word), I am completely humbled in the knowledge that there are so many families, families whom I love so much, who are not receiving this kind of news today. It is for them that I already feel my heart swelling with the need to get BUSY with Lunch for Life. We have been given a miracle. Many others, in fact MOST others, are not. I am more impassioned than ever to change the course for these children so that another set of parents can experience the overwhelming sense of relief and gratefulness in knowing (to the extent you ever can really know)that their child will not lose his life to this monster. Please help me, because I have a purpose.

We love all of you and we thank you with every ounce of our being.
Kristin, Mike, Ryan and Brandon

Sunday, November 9, 2003 10:09 PM CST

Here we go.......

On our journey of peaks and valleys, today was definitely among the deepest of valleys. I am writing this from San Francisco, where we are preparing for Brandon's MRI tomorrow, all the "prepare" appointments and then, of course, the surgery. My eyes are burning from all the tears shed today, so I'll make this brief.

I have never been so proud of my sweet Ryan than I was today. He took the goodbyes in stride, and was even excited about all of the special playdates he has lined up. He did what I hoped but didn't dare believe he would do -- he "stepped up to the plate". Others who have walked in these shoes said he would, but I thought, "well, you don't know Ryan". I was wrong. His heart didn't shatter in a million pieces. He didn't seem to think his entire family was abandoning him like I feared. So why didn't I handle it as well as he did? MY heart DID shatter into a million pieces. I DID feel like his entire family was abandoning him. And while I know he's where he needs to be, it doesn't feel right without him. I miss my Ryan!

Brandon was pretty darn close to perfect on the long plane ride out. We played nicely and quietly (yes, I used the words "Brandon" and "quietly" in the same sentence!)and then he took a long nap. I couldn't have asked for more.

Mike met us at the airport, and we proceeded to the "Family House". The "Family House" is a wonderful non-profit that provides free lodging to families whose children are very ill or otherwise in the hospital for a long period of time. From our arrival there, things went downhill quickly for me. I just couldn't handle it. It's a wonderful place, and it provides much needed help to many. But to me, it felt sad and scary and totally depressing. I kept thinking about the moments I'll need to "escape" from the hospital, and I realized that it won't be an "escape" for me at all. It's just total immersion into the world of serious childhood illness, which breaks my heart. The tears started flowing. We met some families staying there and heard the stories of their sick kids. And the tears continued flowing. So finally, Mike declared it over and called the Marriott and told them we were coming. He realized that I cannot add stress upon stress, and that for me, the "Family House", as wonderful as it is, is not the answer. So we're at the Mariott, where the wonderful manager we met when we were here in August sent us dessert with a note "welcoming us home" and a Mickey Mouse for Brandon (which Brandon is clutching right now as he sleeps), and I am wondering why I have totally fallen apart today. Now, instead of being directly across the street from the hospital, we're across town. Now we have to deal with transportation issues. Now we will have a nice big hotel bill at the end of 3 weeks. I feel terrible. But in my heart of hearts, I know that I just could not cope with the sadness I find in the struggles of the other children and families -- at least not right now. So I'm trying to let go of my guilt, accept that I am not perfect, and move forward so we can face tomorrow.

For all of those who are helping so much to make Ryan feel special, THANK YOU! I especially thank Ms. Furstein, Ryan's loving teacher at St. Martin's, Cyndi Slater, the wonderfully warm counselor at St. Martin's, and Karen and Allan Kent, for welcoming Ryan so generously into their home. I don't know where I'd be without each of you. I know Ryan shed tears at bedtime and that will be his hardest time, but the love you're showing him all day long is going to help him get through this. THANK YOU!

Thanks for all the prayers!
Love, Kristin

*We are staying at the Fisherman's Wharf Marriott. We will check email, update our journal, and answer our cell phones when we can. We will greatly appreciate hearing from you as we feel a million miles away!!!

Sunday, November 2, 2003 1:10 AM EST

As we begin the month of November, Brandon’s surgery looms near, and it is urgently on our minds. I was wondering today if it wouldn’t be too much to ask God to just go ahead and strike me with a lightning bolt if this surgery is not the right path for Brandon. Please, we’re running out of time, so if You’re up there, go ahead and strike away – I won’t mind. Please don’t let us make a big mistake.

Ryan and I had some “special” time together today. When I told him about this, he first wanted to know if we could visit “Toys R Us”. Sure, Ryan, you name it. You own the world today, child, because I’m about to turn your little world upside down. So off to “Toys R Us” we went, not really for him, but for me. Does it make it any better if I admit to buying him new toys to make MYSELF feel better? The dragon stuff…those are the guilt toys. Anyway, after our adventures toy shopping, we went to Bruster’s for the blue stuff, Ryan’s favorite. And as he sat there eating the sprinkles and turning blue from the Blue Pop, I told him all about the upcoming surgery and our impending separation. He protested like I expected him to, and told me he’d just need to come with us and he could just do “stuff” while we take care of Brandon at the hospital. I explained that he needs to stay here and go to school and that this is a time when we all have to be brave. I told him that we will all be sad to be apart, but that there are a lot of people here who are going to help him not to feel so sad while we’re gone. I told him about all the special things I’m trying to arrange to “distract” him, and, much to my surprise, he seemed ok with it. He asked me where he’d sleep and what he’d have for breakfast. And he was ok. I asked him if he knew why it’s important that the doctor take Brandon’s cancer out of his body, and he looked at me and said very matter of factly, “so he won’t die.” I had to bite my lip to keep it from quivering.

So on the drive home from our favorite ice cream place, I was wondering if Ryan’s acceptance of the whole thing is real or just temporary, until the separation actually occurs. I don’t know the answer, but I’m relieved that the first step is behind us and I deeply appreciate his cooperation today. I realized today that if Ryan “steps up to the plate” and gets through this crisis without the tears and heartache of past separations, I will have received one of the best gifts of my life. If his heart breaks at being left behind, my heart will break tenfold. But if he can handle it with courage, I can too, and a great burden will be lifted off of my shoulders. I don’t know if I dare to hope…

I am starting to become very anxious about this week and simply preparing to be away for so long. There are projects to finish at work, plans and arrangements still to be made, laundry to wash and clothes to pack. There are errands to run and toys to choose. I don’t know how it will all get done, but I suppose somehow it will, one way or another. I’m not seeing much sleep in the picture, but I suppose I’m getting pretty used to that.

This week will also be a busy week in Atlanta for Lunch for Life. As some of you know, Ryan's school, St. Martin's Episcopal School, has adopted Lunch for Life as its Fall Faculty Service Project. The faculty will collect donations in lunch boxes during morning and afternoon carpool next week. Some of the teachers are even going to dress up as sandwiches to add a little excitement to the effort. Diana Davis, the health reporter at Channel 2 (ABC), called me on Thurs, and she is attempting to get news coverage of St. Martin's Lunch for Life collection efforts. She will interview me and Bruce Prescott, dad to little Shelby Prescott who is currently receiving treatment for relapsed neuroblastoma. Shelby and Brandon will be the “stars” of the show. Also, Jill Becker from Channel 11 (NBC) called Friday and is either going to do a news piece next week on the 6 or 11:00 news or a live interview on Noonday on Thurs. The only kicker is that she wants Brandon on the set, too. The thought of my 2 year old on the set of a LIVE television program makes me hyperventilate. Those of you who know Brandon know exactly why!!

In addition to the television news, there’s been a development with the Atlanta Journal Constitution. As you may know, the Atlanta Journal Constitution did a little article a few weeks ago about Lunch for Life. It appears that the newspaper has decided they want to actually send the reporter (who is very kind and empathetic) to San Fran to cover Brandon's surgery, "capture the emotion" of all of it. The AJC then will run a HUGE story in the Sun. paper either Nov. 16 or, more likely 23. I understand and am desperately hoping that the story will not just be about Brandon but about ALL the precious children afflicted by this disease, childhood cancer in general, the disparity in funding for curative research, what we're trying to do with Lunch for Life, etc.

As you might guess, Mike and I felt very conflicted about this. On the one hand, I know in my heart of hearts that this would be great for "the cause". Atlanta is a big city, and a huge story about childhood cancer in a big paper could be great for raising awareness and also boosting the success of Lunch for Life. But on the other hand, this is going to be a very difficult time for us and it's also very private and personal. We are not thrilled with the idea of the "emotion of it all" to be captured for 5 million people to read.

Mike and I are very mindful that there are so many other parents who could never devote this much time and energy to the "cause" b/c their children are in the midst of difficult treatments or worse. We've been fortunate to avoid that so far, and now we have a chance to speak for those families and to help their children. Honestly, neither of us particularly wants to do this, but we feel strongly that sometimes God asks us to do things we don't particularly want to do, and that’s what we feel is happening now. We know that we cannot turn away for the sake of our own personal emotions. We feel a huge obligation to all of the children and families who have not been so lucky or who are yet to come to do our part to eradicate this terrible disease from the face of the earth. So we have given our permission, with some boundaries and limitations, to the AJC. We hope we are doing the right thing.

Please keep us in your prayers as we prepare ourselves to travel to San Francisco, not just physically, but emotionally as well. Please keep all of our friends battling cancer in your prayers, too, Carter Martin, Will Hennessy, Jake Rivers, Jon Kwasinski, Sydney Dungan, Shelby Prescott, Dalton, Mitchell, Ryder, Payton Bogert, Roxie Pasma and all the other children who continue to fight.
Love,
Kristin, Mike, Ryan and Brandon

FOR A HISTORY OF LUNCH FOR LIFE, CLICK ON JOURNAL HISTORY LINK

Lunch for Life
Friday, October 10, 2003
Well, we aren't going to reach $10 million in 10 days, much to no one's surprise, I suppose. But what has occurred in these short days has been nothing less than phenomenal. We have received phone calls from as far away as Western Austrailia. They've also come from Geneva, Switzerland and the United Kingdom. The mail arrives in sacks, and the foundation office is getting so many calls they had to buy a new telephone! Donations are pouring in, and the momentum is building across the country and, obviously, beyond.

And while this effort is definitely about the money, for me it's about so much more. It's about giving hope to hopeless families. It's about giving purpose to grieving families. It's about unifying families in similar battles and dealing with similar heartaches. It's about fulfilling the personal missions of so many otherwise helpless parents, all of whom are struggling to make sense out of their child's fate with this horrible disease. Most importantly, it's about saving lives -- real lives of real children. I hope you'll click on the link listed above and visit some of the websites of these children. They look just like your children -- angelic, healthy, happy. They're normal kids just like everyone else's kids...except for this monster that is inside of them. This monster can kill them, and does kill too many of them. It is nothing less than devastating to those who survive it, and it turns the lives of their families upside down. Yes, Lunch for Life is all about beating this monster. Which brings us back to the money. I wish it wasn't about money. I hate asking for money. But we, the PARENTS, have to fight for our kids because if we don't, no one will, so we have to ask for your money, and for the money of your friends, their companies...whomever will give so that our children have a chance to live. It stinks all the way around. But we have to do what we have to do. If I have to ask for your $5 (or more if you are so inclined) so that these kids can grow up, graduate from highschool, live their lives, well, then I guess I have to.

So our Lunch for Life effort will continue beyond Day 10 because it has to. Remember, we as parents of these kids have to change the world. We may not have been able to do it in 10 days, but mark my word, we'll do it.

Thursday, October 23, 2003 10:51 PM EST

I haven't updated Brandon's page in a while. Every time I sit down at the computer ready to type, the task seems too overwhelming to tackle. There are so many things happening, both internally and externally. Let's see if I can do any of it justice.

We are quickly approaching Halloween. Our boys love Halloween. It is a "season" at our house, much as Christmas is. We go all out, with "ghost trees" in our yard and many other decorations. Brandon's favorite is the bat that used to drop down suddenly at the sound of clapping hands. You may have heard him tell the story. Man, he talked about that bat for days. But the bat has not fared too well. It simply could not survive Brandon's enthusiasm, so it no longer drops down or flies back up. It doesn't do anything. This was a source of some distress for Brandon for a while but I think he's moved on to other things -- like all the candy he understands he's going to get when he goes trick or treating. I already have visions of all the nights after Halloween when Brandon will wake up at some awful time like 3:00 am demanding to go downstairs for M&Ms! It's inevitable!

As much fun as it is, Halloween means something more to me than the costumes and decorations and cookie decorating and trick or treating. Halloween 2001 was our first visit to the children's cancer center. We went from Ryan's preschool Halloween parade to sitting across the room from a doctor who was telling us that our precious baby had cancer. I can't forget that day. It's etched in my mind forever. I suppose Halloween will always be a bit of a bittersweet holiday for us.

Brandon's upcoming surgery is staring us in the face. Mike leaves first, on Nov. 6, to give blood for the surgery. I will fly out with Brandon on Nov. 9. He will have an MRI under anesthesia on the 10th, we'll meet with the surgeon on the 11th and then the surgery will take place on the 12th. We have had a lot of time to "plan" for this and to think about what lies ahead. But, truthfully, we really haven't. It's seemed so far away, and we've had so many other things to focus on. But now it's almost here. I have to face it.

Little Sydney Dungan, whose dad, Mark, started Lunch for Life, had surgery yesterday. Before her surgery, Mark asked those who've gone through it what to expect. The responses knocked me off my feet. I realized that I am not at all prepared for what I will see when Brandon is wheeled back to us after the surgery. I am not prepared for the days that will follow. A part of me doesn't want to be prepared. The images are difficult for me to handle. I feel guilty beyond belief (and I know, beyond reason). Here our precious, happy little boy is running around, jumping from the highest point, and we're about to put him through a long and painful surgery. I know we're doing this for the greater good and he'll recover. But I am suddenly terrified. The what ifs are taking over. What if the complications we've heard about for 2 years happen? What if the tumor turns out to be not so dangerous in its genetic makeup? What if we put Brandon through this, he is irreversibly harmed, and we didn't need to do it in the first place? I know. This is not productive. But I can't turn it off.

The stress and anxiety of the upcoming surgery are being fueled by two other circumstances. One is that my dear grandfather ("Da") was admitted to the hospital on Monday with kidney failure. We are all facing the inevitable reality that the people we love so enormously don't live forever. He has had a wonderful life that has been long and full. Still, it hurts to let him go.

Second, I know that I am literally burning the candle at both ends and have been doing this for far too long. It simply is not working anymore. I have hit the wall of exhaustion, and it is starting to affect my health in real, tangible ways. It's time to put the brakes on. I can't do it anymore. What will give? I'm still struggling with this question.

I realized this week that I have, perhaps, handled the period since our scare with Brandon this summer and our subsequent trip to San Francisco all wrong. Perhaps I should have taken a leave from work. I am very, very conscious of the fact that I am not making some people happy right now -- I'm not getting work done quickly enough, I'm not focused enough or there enough. My kids have gotten sick, and I've had to leave. Yes, there are reasons for all of this. But who wants to hear them?? -- and I don't want to give them. For someone like me, knowing that you truly can't make people happy is difficult to take.

So where are we, then? Well, the reality is that we're in the midst of a difficult time and getting closer and closer to an exceedingly difficult time. I am going to try to find the right time to talk to Ryan about it all this weekend. I'm hoping for the best. Please keep us in your prayers. Also, please remember our friends, Sydney Dungan, John Kwasinski, Carter Martin, Will Hennessy (who finishes treatment tomorrow!), Payton Bogart, Jake Rivers (who's in the hospital right now), Shelby Prescott, Dustin Cobb, Mitchell, Ryder, and all the other children battling cancer.

I will update about Lunch for Life below

Love,
Kristin

LUNCH FOR LIFE UPDATE
Thursday, October 23, 2003
I don't even know where to begin to describe the incredible experience that is "Lunch for Life". The response has been completely overwhelming -- much more so than I ever imagined possible. In only three short weeks, we've raised somewhere in the ballpark of $100,000. Just in our own community, amazing things have happened:
* The Atlanta Journal Constitution has printed an article about Lunch for Life and is now preparing to print another, longer feature story about Brandon, our family, childhood cancer, and Lunch for Life. The paper is even considering flying the reporter to San Francisco to follow up on Brandon's surgery.
* Inside Gwinnett, a local newspaper with a circulation of about 20,000 is preparing to run a cover story about Lunch for Life. The editor of this great newspaper (that focuses on POSITIVE stories -- how about that?!) has responded to this story with incredible empathy and understanding. Her response has really touched my heart.
* The faculty at Ryan's school, St. Martin's Episcopal School, has decided to adopt Lunch for Life as their fall faculty service project!! Wow!
* The Children's Neuroblastoma Cancer Foundation ("CNCF") received a call last week from the Paidea School, which has decided to give up its Friday "pizza lunch" and instead donate the money to Lunch for Life. I have no idea who made this happen. I know no one at that school that I can think of. I find this to be incredible and wonderful!
* The CNCF received a call from someone from Atlanta who sits on the board of a national service fraternity. This service organization donates up to $25,000 to small charities. The person who called heard our story and was calling for more information so she could present Lunch for Life and our story to the group and maybe secure a donation for us.
* Willard Arbor of Z93 radio invited me to be on the "Out to Lunch" radio show to share our story
* The CNCF received a note from a 90 year old woman who reported that she heard about Lunch for Life and knew she was supposed to pass the message along to five friends, but since they are all gone, she wanted to donate in their honor. And she did.

There are many more stories like this from communities all across the country. I am amazed but incredibly gratified to see the human spirit shine. Many of the families participating in our effort are being interviewed by local ABC, NBC and CBS stations for news shows. WGN TV in Chicago taped interviews with 2 of our families on Monday and will run a special called "Unsung Heroes" on Halloween. This will air in something like 39 states. I sincerely believe we are only tapping the surface. Today we had inquiries from some big time TV programs. I don't want to mention them by name lest I jinx the possibility that they will air stories. This unbelievable media coverage is important to making our bold $10 million goal attainable and also to creating awareness on a high level. Please keep spreading the word.

Tuesday, October 14, 2003 10:57 PM EST

Before Brandon's diagnosis 2 years ago on Halloween, I didn't know a single child with cancer. I mean, I knew there were some, but these were not children with faces. I remember so vividly the night the doctor told us Brandon's tumor was neuroblastoma. I remember the expressions on his face, I remember his words, I remember time coming to a screeching halt. I remember asking over and over again, "How are babies born with cancer???"

Now, nearly 2 years later, it seems like childhood cancer is very common. I know dozens of children with cancer. These are not children without faces. Indeed, their faces are etched in my heart. I know now that childhood cancer is not virtually cured, as I naively thought before my own child was afflicted. So many of these little tiny precious children are not cured...ever. It breaks my heart.

I am feeling particularly sad tonight because I visited the neuroblastoma listserv where I've come to "know" so many families, and another child is about to lose his life. This little boy, Justin, is 2. His family lives in New York. His parents were hoping for a miracle. It's not to be. My heart is broken. This must be at least 7 children our little neuroblastoma community has lost since the first of September -- 7 children, real children, all with faces.

I want to cry, I want to scream. Why these children?! Why any children?! I want to DO something about it. If I give up my lunch forever, can these children be cured? Can I make that kind of deal with God? Can I make any kind of deal with God to save these kids? It really just breaks my heart. I will never understand this.

It seems so inappropriate to talk about our lives after knowing what the Armenio family is enduring in New York. We have no problems in comparison...

Mike and I had another lengthy discussion with the surgeon in San Francisco about the risks of Brandon's surgery. We feel like we better understand why he and the surgeons here differ so drastically in their assessments of the risks and likely complications. He explained that if he went after Brandon's tumor from the back, he would have to cut off a pedicle and essentially disassemble Brandon's spine to get to the tumor. This is basically what the local surgeon was explaining. However, he thinks he can go in from Brandon's left side through two incisions - one in the front and one in the back. While he will have to cut through a lot of muscle, he will not have to cut bone. He will remove as much of the tumor as he can safely remove and it will be biopsied. If the pathology is particularly dangerous, the surgeon will more aggressively go after the remainder of the tumor, knowing that certain complications are likely to occur. If the pathology is less dangerous, he will be far more conservative in his surgical approach and will likely not attempt to remove the entire tumor so as to avoid certain complications.

Mike and I felt peace after speaking with him. We feel more and more certain that proceeding with surgery is the right thing to do, and the San Francisco surgeon is the right person to do it.

I am really fretting about Ryan and when to have my parents bring him out to us. He does not do well with separation and, frankly, neither do I. We're both attached to each other, and I will have just as hard a time being away from him for an extended period as he will have. It feels kind of silly to be worrying about this so much considering what other families are worrying about tonight. That whole notion of perspective is ringing in my head.

Thank you so much for all of the love and support as we approach Brandon's surgery. And thank you with all of my heart for supporting our Lunch for Life effort. This effort is now so much bigger than all of us who are participating in it. It has taken on a life of its own, and it is so nice to be able to direct my energies toward something so positive. I have been thinking tonight that while we cannot save Justin from this horrible disease, there's another child who will walk down this road one day, and I hope and pray we can save him.

Much love,
Kristin, Mike, Ryan and Brandon

LUNCH FOR LIFE UPDATE
Friday, October 10, 2003
Well, we aren't going to reach $10 million in 10 days, much to no one's surprise, I suppose. But what has occurred in these short days has been nothing less than phenomenal. We have received phone calls from as far away as Western Austrailia. They've also come from Geneva, Switzerland and the United Kingdom. The mail arrives in sacks, and the foundation office is getting so many calls they had to buy a new telephone! Donations are pouring in, and the momentum is building across the country and, obviously, beyond.

And while this effort is definitely about the money, for me it's about so much more. It's about giving hope to hopeless families. It's about giving purpose to grieving families. It's about unifying families in similar battles and dealing with similar heartaches. It's about fulfilling the personal missions of so many otherwise helpless parents, all of whom are struggling to make sense out of their child's fate with this horrible disease. Most importantly, it's about saving lives -- real lives of real children. I hope you'll click on the link listed below and visit some of the websites of these children. They look just like your children -- angelic, healthy, happy. They're normal kids just like everyone else's kids...except for this monster that is inside of them. This monster can kill them, and does kill too many of them. It is nothing less than devastating to those who survive it, and it turns the lives of their families upside down. Yes, Lunch for Life is all about beating this monster. Which brings us back to the money. I wish it wasn't about money. I hate asking for money. But we, the PARENTS, have to fight for our kids because if we don't, no one will, so we have to ask for your money, and for the money of your friends, their companies...whomever will give so that our children have a chance to live. It stinks all the way around. But we have to do what we have to do. If I have to ask for your $5 (or more if you are so inclined) so that these kids can grow up, graduate from highschool, live their lives, well, then I guess I have to.

So our Lunch for Life effort will continue beyond Day 10 because it has to. Remember, we as parents of these kids have to change the world. We may not have been able to do it in 10 days, but mark my word, we'll do it.

Thursday, October 9, 2003 10:07 PM EST

LUNCH FOR LIFE UPDATE

Well, we aren't going to reach $10 million in 10 days, much to no one's surprise, I suppose. But what has occurred in these short days has been nothing less than phenomenal. We have received phone calls from as far away as Western Austrailia. They've also come from Geneva, Switzerland and the United Kingdom. The mail arrives in sacks, and the foundation office is getting so many calls they had to buy a new telephone! Donations are pouring in, and the momentum is building across the country and, obviously, beyond.

And while this effort is definitely about the money, for me it's about so much more. It's about giving hope to hopeless families. It's about giving purpose to grieving families. It's about unifying families in similar battles and dealing with similar heartaches. It's about fulfilling the personal missions of so many otherwise helpless parents, all of whom are struggling to make sense out of their child's fate with this horrible disease. Most importantly, it's about saving lives -- real lives of real children. I hope you'll click on the link listed below and visit some of the websites of these children. They look just like your children -- angelic, healthy, happy. They're normal kids just like everyone else's kids...except for this monster that is inside of them. This monster can kill them, and does kill too many of them. It is nothing less than devastating to those who survive it, and it turns the lives of their families upside down. Yes, Lunch for Life is all about beating this monster. Which brings us back to the money. I wish it wasn't about money. I hate asking for money. But we, the PARENTS, have to fight for our kids because if we don't, no one will, so we have to ask for your money, and for the money of your friends, their companies...whomever will give so that our children have a chance to live. It stinks all the way around. But we have to do what we have to do. If I have to ask for your $5 (or more if you are so inclined) so that these kids can grow up, graduate from highschool, live their lives, well, then I guess I have to.

So our Lunch for Life effort will continue beyond Day 10 because it has to. Remember, we as parents of these kids have to change the world. We may not have been able to do it in 10 days, but mark my word, we'll do it.

Wednesday, October 8, 2003 12:41 PM EST

UPDATE ON BRANDON
I received a call yesterday from the neurosurgeon in Atlanta whom we consulted last week about the risks of Brandon's surgery. He called to report that he had consulted with his partners (there are 4 of them) and that they all agree that resecting Brandon's tumor would require removal of an entire pedicle which would destabilize Brandon's entire spine. I reported to him our discussion with the San Fran surgeon last week and he said that they just have a difference of opinion. When I asked him if he would conference with the San Fran surgeon, he just said that he doesn't think they'll reach a uniform consensus. I guess that means no. I hate to annoy the San Fran surgeon with more questions, and I feel sure that if he thought this was a risk, he'd have told us as much. But I've learned not to assume much of anything, so we're trying to graciously approach him so as not to put him off with more questions. I know what you're thinking -- he shouldn't mind. But these drs are busy taking care of gravely ill children. Brandon's not high on their priority list. At least not now -- and the whole point is to keep it that way.

I laughed this morning when I read the article in the Atlanta Journal Constitution about Lunch for Life. I've been self diagnosing myself as crazy for a long time. I guess it's official now that it's in the AJC!

Please keep us in your prayers. We need to have peace with our decisions to proceed and we need our boys (who have been plagued with all the fall illnesses since early Sept!) to be well!
Thanks for caring!
Love, Kristin, Mike, Ryan and Brandon

SUNDAY, OCT. 5, 2003 3:38 PM

As I sit staring at my computer screen thinking about how I can possibly describe the profound impact Lunch for Life is having on me, the words do not come. What words can describe what it feels like to get an email from a mother who lost a child to neuroblastoma and to hear how this effort is impacting her? What words can describe what it feels like to have the faces of at least 30 kids I didn't know about yesterday who are battling cancer now etched in my heart?

The Texas dad who came up with the idea for Lunch for Life, Mark Dungan, wrote the most incredible words this morning about this effort and what it's meaning for him. I hate to use his words, but they express how I feel, and I'm sure I couldn't do nearly as well if I tried:

This page was last updated on 10/05/03 07:25 AM.

Dad's Diary

I had high hopes this morning of writing an entry to talk about all of the wonderful things that have transpired since Lunch for Life began. But instead, I find myself thinking of a little boy and his family who are facing a very tough time right now. I have been told by his mother that he will soon earn his wings. In the world of neuroblastoma all of our kids are angels but far to many of them become real. As I read this mothers words I can feel her pain. Although I can only imagine the fear and anguish that she has gone through in these last few weeks I know I am not the best to offer her comfort. I know there are thousands of parents who will reach out to her because, unfortunately, they have walked that road before. It has been a tough month for the parents on the neuroblastoma group in which I participate. Many of the families that I have come close to have lost their little ones. Although I don't know many of them personally, I see their words fly by my computer screen almost everyday, I read their websites, and when I can find the words I do my best to comfort them. And I know that right now their is a family out there somewhere in the world who is losing the battle and there is just nothing I can do about it. I can't fix it, I can't make it go away, and it hurts. So, as I take advantage of the fact that this is Sunday and I say my prayers, I offer my first for the comfort of a loving, bright, generous child whose strong spirit should be enough to keep him here on earth but too soon will be an angel and the next for his loving Mom who, like everyone one else, hates this damn disease and is searching for answers. May God find you both peace and strength very soon.

After thinking about this family it seems so simple to me. It makes so much sense. I would gladly give up my lunch to save his poor life and I think I would give them up for the rest of my life if I knew it would make a difference. I think everyone would. I wish I could make that deal with God this very minute. Wouldn't that do it. If I could only stand right next to this little boy, holding his hand and barter my lunch to save his precious life. I don't mean to be preachy and this is not a sales pitch. I have to make sense of it in my own mind. It is so real in my daily life and I have to make the connection. Had I started lunch for life ten years ago. Had I known about these many childhood cancers, had I gave up my lunch and made a difference then this young little angel would be playing on the playground instead of losing his life. That is my problem with lunch for life. It is a great effort and it will save thousands of lives but I can't hold up a child's hand and say this is a life you are saving. I can't definitively say that if you give up your lunch today you will save this child's life. I can only say that you will save a child's life in the future. I don't know who it will be. I don't know where they will be from, but there will come a day in the future that we can stand up and say we cured cancer and it was your lunch that did it. Is that enough. Will that make the connection? Will people understand? Will they feel it that moment? I know people care and I know people continue to donate and for that I am tremendously thankful but what will make the difference to the world. What will convince millions (because that is what we need) to take time from their busy schedules and daily lives to give up one lunch out of their lives for these kids. I know that if I could walk through the streets with a child in hand and said to everyone I saw, "If you give up your lunch today you will save this child's life." that they would do it without exception. So tell me, how does a father in Texas get that word out? How do I make it real? How do I convince the world that it is that simple? What do I scream from the rooftops? God give me the strength, the courage, and the words. I have a purpose.

Until the next time......

SATURDAY, OCTOBER 4
The most exciting aspect of Lunch for Life is what the effort is clearly doing for all of the cancer families involved. It is unifying, it is reigniting hope, it is allowing families who've lost children to feel joy. This effort has made all of us realize that we are part of a much bigger "family". It has provided us with a glimpse of the goodness of the human spirit. With the hope this effort has brought about, we are prepared to continue on our journeys.

If you do make a contribution in honor of Brandon, please drop me an email at kristin.connor@agg.com with a message in the Re line that says "I gave up my lunch for Brandon Connor". This will provide some way for us to track what is happening.

Thank you to everyone who is helping our cause. What started as a bold -- ok, crazy idea is taking off on a level that so far exceeds our expectations. There are no words to describe what this means to us and to so many others.

Stay tuned...we're just getting started!
Love,
Kristin, Mike, Ryan and Brandon

Friday, October 3, 2003 9:34 AM EST

Brandon's update is below the "Lunch for Life" information...

LUNCH FOR LIFE RESULTS:
Friday, Oct. 3, 2003 9:30 am

Well, we thought we'd be able to track the numbers but by the sheer growth of the effort, it's become impossible already. Day 2 of Lunch For Life was completely incredible. We are now hearing stories from across the globe. Many parents who walk the road with us in parallel lives are joining the cause. We are on the radio. We are in the newspapers and people are starting to take notice. I must admit as we thought through this plan in the days of late September, I wondered, "With all of the wonderful insights that I have gained from my child and this experience, is it my newly regained senses of innocence and naivety that were leading the way?" As I looked at the world from Brandon's eyes and the eyes of all of these other children, all I could see was love and hope, kindness and joy. Would other people see this as well? Would the message from these children be clear and would people understand? Have their eyes been opened by our sweet little boy or have the remained closed? Will others fall victim to apathy and indifference? Before this nightmare, would I have stood up or would I have continued to let these lives fade away? Would I have made a difference? Would I have taken a stand? For now, I am content to look at the world through the eyes of these children. I am prepared to believe that this is important enough of a cause and I am very prepared to believe in this miracle. Who wouldn't give five dollars to save the lives of so many children and spare the pain of so many who follow their journeys.

We are making a HUGE difference. Please continue our efforts...

WEDNESDAY, OCT. 1, 2003 2:07 pm EST
“Lunch for Life” is a grassroots fundraising campaign that is being launched today by families battling neuroblastoma and other forms of childhood cancer around the country and in Canada. This idea evolved from a discussion among emotional parents who want to do something to end the suffering of our children. Over just a few short weeks, the idea has grown into a tremendous effort that will take place from one coast to the other, and many places in between. We are impassioned parents who are speaking to our friends about our children and who are committed to making a difference for the next generation of children who will face this disease. Please consider joining our effort. Today is the day we’re going to change the world.

"Lunch for Life" is a great opportunity to stand together and make an impact, to make the world hear us in one united voice. I truly believe it will work and if the past week is any indication of how effective it will be, we could make our goals. The original idea was really based on the feelings of a few desperate parents, but as we have further refined the idea we feel even more confident that it will be successful. This could very well be the difference we need. We need voices shouting from around the world saying that this is important. Hopefully, with enough families, we will make the difference.

First off, I want to thank you for your interest. We have three goals. First, we want to raise funds to aid in the research effort. Funds will by applied to grants for neuroblastoma research. Grants will be funded based on the opinions of a medical panel whose sole purpose is to hasten the search for a cure. Second, our goal is to increase awareness. I hope and think that we will receive national press (press releases are being issued around the country) and this will afford us the opportunity to get the word out and make our cries heard around the world. Third, we would like the funds raised to be used to educate and support the families afflicted by neuroblastoma. This effort is not for any one hospital or group of health professionals. This fundraiser is dedicated to eradicating this disease and its effects from all of the children currently fighting the battle and the thousands that will follow.

All funds raised will be for the benefit of the Children's Neuroblastoma Cancer Foundation (CNCF), a charitable organization with like minded goals dedicated towards the search for a cure wherever it may lie.

With that being said I ask you to join me, my family and hundreds of others in a single effort to level the playing field and raise the funds necessary to make an impact. With all of our collaboration, in just ten short days we will be able to send the research effort in fast forward. We can do it.

The theory behind "Lunch for Life" is very simple. We are asking everyone we know to give up their lunch -- about the cost of five dollars -- and donate it to the Children's Neuroblastoma Cancer Foundation. It is really much more than this but the basic premise remains true. We have received public support with our effort and we are prepared to make a dramatic impact nationwide. We are hoping that a ground swell of support will take our grass roots campaign to the rest of the world. Here is how it works. A large group of parents across the country are going to ask the hundreds of supporters for our families to help us in this crusade. Many are friends and acquaintances but many more are people we did not know until we joined in this fight against neuroblastoma. Many are daily readers of our families’ website and follow our lives on a regular basis. It has been through their offers of help and support that we have decided on this particular path. Today, we are asking our supporters to do a favor for our family, for your family, and for the thousands out there yet to be diagnosed and donate five dollars to the CNCF. Furthermore, we are asking that they propagate this challenge by asking five of their closest friends to do the same and then continue the challenge to each new group of friends each day for a total of ten days. It is very similar to the theory behind the movie "Pay it Forward." Unfortunately, the steps that we take today may not be in time for some of our children. To a certain extent, many of their fates rest in the medical technology that exists today. But if we can make enough impact and spread the word to keep this pyramid of giving growing, we will save thousands of lives of the children yet to be diagnosed and we will save their families and friends from the pain that we face everyday. If we can just inspire our friends and family and the thousands of others out there in the world we can make a difference. It takes a large quantity of people and this method will get the word out.

Some people will give much more than five dollars, some will not donate at all. Some people will tell hundreds of their friends, and some will not tell any. It takes every one being diligent and checking up the following day to make sure their friends have followed through, but it can work. At the very least it will raise a truly substantial amount of money for an extremely worthy cause and at its very best it will exceed our expectations. Regardless, in just ten days of our combined effort, we will change the world of neuroblastoma. There are enough of us.

Methods to get donations to the Children's Neuroblastoma Cancer Foundation.
People can donate online at:
https://www.cncf-childcancer.org/donation.asp
This is a secure site accepting Visa, MasterCard, Discover, and American Express. This is the preferred method of donation since we will be able to report these numbers to the media to hopefully increase the momentum of our effort.

People can make their pledge online at:
http://www.sydneydungan.com/Pledge_Page.asp
After providing their information, they will be contacted by a volunteer or sent a pledge card to make their donation by mail. Sydney Dungan is a little girl in Fort Worth, Texas battling high risk neuroblastoma. Her father initiated this effort.

People can call:
1-866-671-2623 CNCF direct line
People can fax pledge/donation card to:
1-630-351-2462

People can mail their donations to:
Children's Neuroblastoma Cancer Foundation
P.O. Box 6635
Bloomingdale, IL 60108

NOW FOR BRANDON'S UPDATE:

TUESDAY, SEPT. 30, 2003
More confusion, more gray….and so our journey continues.

We just returned from meeting with the pediatric neurosurgeon here in Atlanta, which we did at the insistence of our oncologist. We knew it would introduce "grayness" back into the picture and we flip-flopped about whether to even meet with him for that reason. With the opinions from San Francisco, we felt like there was a well-defined and well-reasoned plan. We did not particularly want to go backwards. But we decided to go forward with this appointment anyway lest we risk running away from important information we just might need to know.

As I have come to expect, a discrepancy exists among the experts. When does it not? The neurosurgeon raised some major issues of concern. We have called the surgeon in San Fran and are awaiting a return call. If there is no consensus after we speak with the San Fran dr, we are hoping we can get the surgeons on the phone with each other as their opinions about potential risks and complications differ drastically. If there's still not a consensus among them, we will consider getting a third opinion about risks/complications. The issues that have arisen are not ones that can be attributed to differing skill levels (which I'm not all that sure exist anyway) but of what kind of nerves are involved - a question which it seems to me would have a clear answer. The surgeon in San Fran says the nerves that run through Brandon’s tumor are only sensory and if sacrificed, will leave Brandon with a patch of numbness down his thigh -- not such a big deal. The surgeon here says they are motor nerves and he feels "reasonably certain" that removal of this tumor will leave Brandon with a significant motor deficit -- a very big deal.

So we need to know who's right before we proceed. We are both frustrated and concerned but feel that since we are trying to make the best decision we can make, we want to have the information we need to have. But there has been nothing clear about this from the beginning, and that continues. On top of that, Brandon appears to have a bad case of croup (I'm taking him to the pediatrician next) so I'm tired and a bit cranky, as if you couldn't tell! AHHHHHHH! Nothing's ever easy, is it?!

However, through these trials, we continue to learn. I have corresponded a lot recently with many parents whose children have been struck by this disease. I talked to a father in Fort Worth whose two year old is in the hospital receiving chemo and is about to undergo surgery. His daughter is fighting high risk neuroblastoma. I talked to yet another mother in Chicago who is fighting a battle for information for her one year old son. There are so many families, all of whom have different backgrounds and stories, all of whom are struggling in the battle against neuroblastoma. I learned more than ever that we are not alone. There are hundreds of heart wrenching stories out there in this world. There are parents, right now, sitting in my shoes trying to make sense of this whole ordeal and too many children who are fighting a battle they never should have been in. It is amazing to see the similarities in our journeys. I am touched by their stories and moved by their words and perhaps that is another gift from Brandon. I can tell you this, something needs to be done. The suffering is simply too much. These kids need an answer, and I have a purpose.

Today I will take care of Brandon and tomorrow we will change the world! Stay tuned.
Love,
Kristin, Mike, Ryan and Brandon

PART II - WEDNESDAY, OCT. 1, 2003

Mike and I spoke with Dr. Gupta in San Francisco for a long time last night. We hung up the phone very confident of why are doing this surgery and, even more importantly, why we are doing it in San Francisco. He spent a considerable amount of time explaining the surgery in detail. Essentially, the goal of the surgery is not just to remove the tumor but also to determine what the tumor is. The pathology, which will be determined while the surgery is proceeding, will determine how aggressively the surgeon attacks the tumor and whether he takes the entire nerve root, etc. He explained that even if he has to take it, he doesn't expect the effects to be either severe or long term for Brandon. It's too much detail to put on this website, but suffice it to say that we are calmed and feeling even more confident about the decision to proceed than we did before yesterday's confusion.

I probably should have waited to post an update until we had more information. But if anything, it gives you an idea of what it's been like for us the last 2 years. Doctors disagree, information contradicts other information, we feel distressed and unable to make decisions, etc. Fortunately, THIS TIME, there's some resolution and quickly. That's just about a first.

If you've gotten to this point, you probably have read the "Lunch for Life" information. It is incredibly exciting to think that parents could join together like this and pull something of this magnitude off. We'll see!
Much love,
Kristin, Mike, Ryan and Brandon

Monday, September 15, 2003 9:13 PM EST

Brandon's surgery has finally been scheduled. November 12 will be the day. He will have an MRI on the 10th, pre-op tests, etc. on the 11th and the all day surgery on the 12th. I am very disappointed with the delay, particularly since we were first told that the surgery would take place in early October. I now have an additional 7 weeks to stew over this and second guess the decision to proceed. I am already going to require another telephone consultation with the surgeon to rebuild my confidence about this. It is just so SCARY! But deep down, I still feel that it's the right thing to do and so does Mike. So I suppose we will make the best of the scheduling and try not to dwell on this for the long waiting period ahead (SURE!).

I had an interesting email exchange with Brandon's oncologist today. He is pretty much sitting on the fence about this surgery. He has told us many times in the past that surgery will never be a good option for Brandon because of the location of his tumor. However, following our San Francisco consultation and on the heels of our summer scare, the doctor told us that surgery is a reasonable option. Today the doctor told me that he can talk himself into or out of surgery. There are risks and benefits to proceeding and risks and benefits to continuing to wait and watch. He said that he wants to guide us and keep us from having to make "medical" decisions, but there's simply no right or wrong answer in this case. I appreciate his honesty. We've always been personally fond of this man. But I am a bit struck by the position it leaves us in. In my view, today's email exchange with him pretty much sums up the totality of our experience over the last 2 years. No one really knows what to do. There are no guarantees that things will turn out ok if Brandon doesn't have surgery, no guarantees they'll turn out ok if he does. I know you're probably thinking that there are no guarantees in life in general. That's true, but this is my CHILD we're talking about. I WANT GUARANTEES! Anyway, I'm just reminded once again how much this whole situation just stinks!

On a positive note, Brandon had a happy second birthday, although he continues to insist that he is now FOUR and not just 2. We had a great weekend in Birmingham with our awesome friends and, of course, we were so happy and proud to see Lauren's Run launched and to be a part of it all. The groundwork has been laid and we hope that the event will grow and be as successful as Lauren's Run is here in Atlanta.

Speaking at the run was both a really cool experience for me and a very emotional one. Can you believe that I really DIDN'T think it would be emotional?! What was I thinking? Talking about pediatric cancer and revealing parts of our "story" on Brandon's bday right before he has surgery?!?! How could that NOT be emotional? Anyway, I know I wasn't eloquent with my thoughts but it was a start. Mike has asked me to put my remarks on the website for others to read, so, for him, here they are:

LAUREN'S RUN REMARKS:
It’s so exciting to be here and to see all of you here. The fact that you’re here means so much to me. You see, I’m a mom of a child with neuroblastoma, the same kind of cancer that stole the lives of the two precious Laurens, and your being here just brings so much hope into my family’s world. I want to beat this disease that keeps robbing families of their precious children. There’s a lot of work to do, and you’re helping us do it simply by being here today.

Before I had a child with cancer, I had no idea how common childhood cancer is. The statistics are something like this: in the US, 46 children/adolescents are diagnosed with cancer EVERYDAY! It occurs in 1 of every 330 children by the age of 19. I thought lots of childhood cancers were essentially “cured” now, but actually, now I know that’s not true. While certainly advances have been made with treatments for some childhood cancers, others, like neuroblastoma, still have very poor long term survival rates.

But you know, even if I’d heard those things before our son was diagnosed, I don’t know that the cold hard facts would have registered. Wow, has our life changed. Our son was diagnosed when he was only 5 weeks old. I don’t think anything in life prepares you for the moment that someone tells you that your precious little baby has cancer. Nothing in life prepares you to meet and come to love family after family who is living the nightmare, struggling, fighting to save their children. Nothing prepares you to watch these children suffer through their treatments. And absolutely NOTHING prepares you to watch a family lose their battle.

But we are here now. We are part of the childhood cancer world. And my heart has been forever changed by it. I now have a need that lives deep inside me to DO SOMETHING about this terrible disease. I hope some of you out there will come to feel the same way. There are so many children who need you.

Two years ago, I didn’t know how underfunded pediatric cancer research is. I think I got my first glimpse of this reality early on in the course of our child’s care. From the time of his diagnosis, now nearly 2 years ago, and continuing today, the answer to almost every single question we ask is “We don’t know”. Sometimes I wonder what they DO know. Sometimes I want to scream at the doctors, “Don’t you know it’s 2003?! What do you mean you don’t know!??!?! How can you not know?!?!”

I read recently that only pennies of every dollar given to support cancer research is used for pediatric cancer research – only pennies go to our children. Childhood cancer does not have a loud voice. There are no celebrities in Washington lobbying for more funding to save our children. The money to support the research that’s needed to CURE these children comes largely from grassroots fundraising efforts like this one. Thank goodness for the Zagorias and the Kochmans for what they have so selflessly done for our children.

Lauren’s Run and City of Hope have truly been a source of hope for our family. The incredible, amazing advances that are being made AS A DIRECT RESULT OF THE MONEY THIS RACE RAISES may one day save our child’s life. I expect that over the next few years, we’ll see that the advances will save the lives of MANY children and also many adults. And that’s why I am so thrilled to be in Birmingham with Lauren’s Run and why I am so personally grateful to all of you for getting up early and being here with us for this. These kids and their heroic stories will touch your hearts if you let them. I hope you will be inspired to want to make a difference in this fight for our children. We need you if you are willing.

End of remarks and back to journal entry...

I am personally grateful for Lauren's Run. It gives me a way to channel my feelings of grief, worry, anger, etc. in a positive direction. I truly carry all of the families I've come to know or even just know of who are dealing with this in my heart, and I hope I will find my way to make a difference in this fight on some level. It's a really selfish desire on my part, but sincere nonetheless.

Tonight, please keep these families in your prayers -- they are all "living the nightmare", and they all mean so much to me: Carter Martin (Ewing's Sarcoma) and the Martin family, Will Hennessy (Ewing's Sarcoma) and the Hennessy family, Jake Rivers (ALL leukemia) and the Rivers family, John Kwasinski (neuroblastoma) and the Kwasinski family, Shelby Prescott (relapsed neuroblastoma) and the Prescott family...and there are so many others. They all need and are so deserving of our prayers.

Thanks for caring about our journey and for checking on us.
Much love,
Kristin, Mike, Ryan and Brandon

Monday, September 8, 2003 9:36 PM EST

It has been a bit of a crazy week at our house, with the back to school "junk" hitting with full force. Brandon had the virus first and now Ryan has it full blown. It is times like these that I feel like I do not manage the work/home balance very well. I think about all the single parents who do this by themselves ALL THE TIME, and I am just in awe.

As we have traveled one more week along this journey, we have encountered new lessons. Some have been really exciting, with potential new doors opening for us to do our part to help find a cure for this stinking disease (I'll write all about this if it evolves past the idea stage!). Some have been very painful -- too painful to share. But I suppose even the painful lessons are important since we grow and evolve from all of our experiences.

Brandon will celebrate his 2nd birthday on Saturday, and we will celebrate in Birmingham, where the inaugural Lauren's Run will be held. I learned today that I will have the honor of speaking at the run about pediatric cancer in general and the importance of raising awareness and funds. Wow. My challenge will be speaking succintly and not going on and on forever. They might just have to drag me off of the stage. Seriously, we are really excited about this and thrilled that some of our dearest friends will be going with us. What an incredible thing for them to do for us! By the way, everytime we ask Brandon what he wants for his bday, he proclaims "M&Ms!" Of course, that's his answer to everything these days. I think he's trying to make up for his brother's disdain for chocolate!

Over the course of the last 2 years, I have been quite educated about neuroblastoma on a website that is for people dealing with this disease or somehow touched by it. I am mostly a silent reader of the message board, but I have become very attached to some of the families that "live" there and have become good friends with other families. All the families have a common bond. It is with sadness that I write that the Poncin family lost their little girl, Madison, to neuroblastoma only 2 days before her 4th birthday. Madison sailed through treatment after her initial diagnosis but later relapsed and just could not beat this nasty disease. Please keep the Poncins in your prayers. We are heartbroken that this disease has claimed another life.

One of the dads that posts to the message board is an incredible writer, and he recently posted something that just really touched me. He is graciously allowing me to share his writing here. I hope you find it meaningful like I did:

To Whom it May Concern:

I don't want to strike a lot of controversy, or carry on a dialogue that is not appropriate for this forum. Let's just say that You and I have never talked before, and there are a few things I would like to get off my chest. Obviously, this is a bit of strange way to reach You, but there are some really thoughtful people here with closer connections than me who might be able to pass along the message if it doesn't get there by a more direct route. And let's be frank, I don't know where "there" is or exactly who You are. But I think the things I want to say may be relevant in any case.

First of all, I have to say I'm a little bit upset about this whole Neuroblastoma thing. There has been a lot of suffering and pain and misery. It's a horrible thing to subject a child to, and it is really not pleasant for the rest of the family. The fear and anxiety are ever present. I would have much rather have had the heart ripped out of my body than have this happen to Spencer. I don't think it really matters whether You had any direct involvement, it happened on Your watch, and I am angry about that.

Enough said. Now for the more important stuff. There are actually a few things for which I am extremely grateful. Things that in the everyday course of life, I didn't think enough about or have a deep enough appreciation for.

Many mornings now, I wake up and see my boys sleeping peacefully and think it's a glorious day just because they are alive and here. Thanks.

The strength, caring, and love of Tracey is profound beyond words. For that, I am hugely appreciative. Thanks.

I don't really care if the grass gets mowed, or the meeting gets attended, or the car gets washed. It's a whole lot easier to select the little things which when added together are important in the grand scheme and not sweat stuff that really doesn't matter. And careers, money, nice cars and the like now rank among the small stuff for me. Thanks.

I enjoy it sometimes when the boys argue, carry on, or get excessively silly. It's a wonderful thing to have them so full of life and vitality. I have to work harder to get annoyed. Thanks.

I can listen to someone pour their heart out about the miseries and pains of everyday life, feel for them and have comforting words, but not be at all alarmed knowing what incredible capacity ordinary people have to cope with everyday misfortune. Thanks.

Friends and family have amazing capacity for love and caring and concern that you just don't necessarilly see or appreciate every day. I do now. Thanks.

When life is at it's most unbalanced and extreme, somehow it's possible to gain a new sense of perspective which puts you in a better balance than you ever had before. Bizarre. Thanks.

And finally, thank you for giving me the voice to talk about things like this, that I never would have talked about before. I feel better now. And if You are there and listening, we would sure appreciate a good outcome for Spencer.

Thanks,

Steve

I'm with Steve! Thanks for checking on us and for caring about our journey!
Love,
Kristin, Mike, Ryan and Brandon

Friday, August 29, 2003 11:29 PM CDT

As I approach this update, I feel totally inadequate to articulate what the last two weeks have been for us. We still don’t have a confirmed date for Brandon’s surgery, but it appears that it will be Oct. 1, with a Sept. 29 MRI, or Oct. 8, with a Oct. 6 MRI. Without a firm date, I have deliberately avoided dealing with any of the details - - - hotels, family houses, flights, rental cars, boarding our dogs, arrangements for Ryan. It’s almost like we are still preparing to take this enormous step. For two years, we’ve been researching tirelessly, searching for answers and, even more, assurances that the recommendations to “do nothing” will not result in harm to our child. I have never been at peace with this approach. It has simply never felt right. Whether it is a mother’s intuition that’s been at work or simply my own neuroticism (is that a word???), I’ll never know for sure. But something has caused me to continue to question and continue to push, even in the face of many who looked at Brandon running around and gently (or not) encouraged me to get on with life.

Now, at a time we weren’t searching for answers or looking for expertise, we’ve been led to these world-renowned doctors who validate every single fear I’ve ever had. One issue that clearly puzzles people is how Brandon’s tumor can be dangerous if it hasn’t GROWN in nearly 2 years. The fact is that most children with neuroblastoma are diagnosed between ages 1 and 4, usually when they develop some kind of symptom. By the time the disease is found, it has usually spread, and that’s why the survival statistics are not good. Many researchers believe that these children were born with their tumors, which remained in a stable state (i.e. not growing) for some period of time, in some cases, for several years. Then one day, for reasons no one seems to fully understand, the tumors become unstable, start to grow and the disease spreads.

THE issue in Brandon’s case is whether his tumor is comprised entirely of matured tissue, such that it is essentially benign at this point, or whether it is as I’ve described above a tumor that is currently sitting in a stable state waiting for it’s day to shine. There is simply no way to know the answer to this question unless and until this tumor is out of his body and can be examined under a microscope. If it’s a benign mass, this nightmare is OVER for us. No more scans, no more oncologists. If, on the other hand, it turns out to have immature elements, Brandon could need treatment to rid his body of tiny, microscopic neuroblastoma cells that could (and would almost certainly) threaten his life.

So given that scenario, and now a confident surgeon who feels like he can remove this tumor without significant risk to Brandon, what in the world choice do we have than to proceed with this?! In making the decision to go forward with this surgery, after two years of consuming worry and fear, the enormity of it all is not lost on us for a second.

Yet being in a place of limbo – that is, between the decision to move forward and the need to deal with the details of the surgery and the long trip – has been almost welcome. It has allowed me to reflect a lot on what all of this has meant in my life. Mike might have different thoughts, but for me, it has been a period of deep and intense suffering. Yet this week, I am honestly reminded how meaningful life can be even and especially in suffering. Don’t get me wrong. The good that has come out of our suffering does not erase its badness (if that makes any sense). Nothing can do that. But there’s no doubt that Brandon’s disease has created a whole new context for my life. It has made me believe that the “valley of suffering” is where character is made. I’ve had so many opportunities to see this truism at work in my life and in the life of other moms fighting to save their babies (Leigh Ann, Ellianne, Jane…you know who you are!!!).

I’ve also learned to accept the lessons that are there in the midst of the grief. Even until recently, I refused to give up on the notion that I am able to do everything all the time without help – manage work, my family, Brandon’s condition, etc. I somehow managed to scrape by, holding on to this illusion, until the recent scare we went through with Brandon. It was at that point that I hit the brick wall. I thought it would a temporary state, but it didn’t disappear with Brandon’s fever. Is it really true? Sometimes you really do hit a point where you simply cannot do it all anymore without help??? I’m here to tell you, it really happens.

So when we made our decision to proceed with the surgery, and my dear friends started to consider and prepare for what they could do to help us, I found myself in a strange place. Accepting help – even simply needing help – is an incredibly uncomfortable place for me to be. Mike and I have done a whole lot of quantifying and comparing our suffering over the last two years to those of other families with children battling cancer. We’ve always understood that, in this world of childhood cancer, we have very little to complain about. Our suffering is minimal compared to that of so many other families. But, you know, it’s taken me 2 years to realize how unhealthy it is to continue to do this. In so doing, we have completely deprived ourselves of the validation that we have needed to experience our circumstances for what they are. I’m realizing that everyone experiences suffering in one form or another at some point in their lives, and each circumstance is unique and painful in its own way. I wonder if instead of continuously reminding ourselves that everyone else’s suffering is worse than ours, time would’ve been better spent simply dealing with the feelings and allowing ourselves to be enlarged by our circumstances.

I have no idea if any of this makes any sense to anyone other than me. All I know is that we are incredibly overwhelmed with the very visible and very literal outpouring of help. I have never felt so supported and so lifted up in my entire life. This whole experience is reshaping our hearts. It’s clear to me that who I am today and who I will be tomorrow is a product of the love and concern of our friends and family, and of the countless strangers who have helped us along the way. There’s simply no way to thank you.

Ending on a lighter note, I am thrilled to report that Ryan’s first two weeks of kindergarten have been a great success. He loves his school and told me last night that he has the “nicest teachers in the whole world.” Mike is thrilled to hear that he’s spent at least a few days on the playground showing the admiring little girls how brave he is to pick up worms….”that’s my boy!”

Love to everyone,
Kristin, Mike, Ryan and Brandon

Wednesday, August 20, 2003 4:06 PM EST

Perspective…
Have you ever had a moment where something happened or for some reason you just really gained some perspective that changed your course of thinking? I was so glad for my moment this morning. As we headed back to Atlanta, I found myself starting to do what I do best – worry. I really can worry with the best of them, you know. I was worrying about Ryan and how we (he and I) will handle such a long period of separation, worrying about how we will afford all this, worrying about what we will do with our dogs, worrying about being gone from work, worrying about the surgery and something going wrong, worrying about laundry getting done and house projects getting done…who knows what else. As you can imagine, all of this worry has made it hard to sleep at night. I was getting ready to take Ryan to orientation this morning (yep, more worrying), and I had my moment when I got a little perspective. All of a sudden, I started thinking about all the people from other countries whose emails I’ve read who are desperately trying to get in the care of U.S. doctors but who need to raise hundreds of thousands of dollars (literally) to put down as a deposit before the doctors will see those kids. And then I started thinking about all the parents who have had to quit their jobs to manage the chemo schedules, and of my friends had to cancel their daughter’s surgery because she lost her battle with neuroblastoma before it could happen. And all of a sudden, the weight lifted because I finally had a little perspective. Our worries are so small. We are so blessed.

And I started thinking a lot about how it is that God uses times of difficulty to show us our blessings. It’s true. I don’t think I appreciated any of the blessings in my life before all of this happened the way I do know. And as I meet more and more families dealing with similar struggles, the theme remains consistent. They all seem to marvel at how much they have to be thankful for.

That is not to say I will not continue to worry. I will. And things aren’t always happy. You know, sometimes you just have to be sad and feel crummy. I do NOT WANT to put Brandon through this surgery. I DO NOT WANT to be away from Ryan! I WANT this two years of stress and anguish to be OVER! But we have to do this – it’s the right thing to do for Brandon, no matter what happens (someone remind me I said that if something goes wrong). Sometimes we can be happy with the good news in all of this – i.e. the negative MIBG scan results. Sometimes we can’t, i.e. all of the stuff in the first paragraph! Sometimes we feel both at the same time and it’s all just a matter of our ability at that moment to look at things with a little perspective.

Please keep the prayers coming as we begin to make plans. Ask for us to keep our perspective.

Ryan starts kindergarten tomorrow. I’m sure I’ll need the prayers more than he does, but remember him on his big day! :)

Love,
Kristin, Mike Ryan and Brandon

Thursday, August 14, 2003 9:55 AM PST

This will have to be a quick update as I have 2 very hungry little boys waiting for their pancakes!! We have had a couple of very long but productive days in San Francisco. We continue to be reminded and amazed at the truth in the saying that "medicine is an art not a science." Clearly, there is simply no one "right" approach to Brandon's medical condition. But the doctors here have given us very clear and confident opinions.

Brandon had his MIBG scan yesterday, and thankfully, it was negative. We have always understood that a negative result is not definitive. He could still have microscopic foci of neuroblastoma in his body. But this is obviously a far better result than a clear positive.

Our meetings with both the oncologist and the surgeon were good and very productive. The oncologist reported that the reason there has been so much confusion regarding scan results is that very different techniques have been used from one MRI to the next. The result has been that the tumor has appeared less impressive in the later scans, leading to the conclusion that it has decreased in size. However, the doctors here believe that the change is not "real" and the less impressive appearance is due to the different techniques used rather than any real regression.

So, where does that leave us?? Brandon is now approaching his second birthday with a tumor that has remained stable for nearly 2 years -- no real growth, no real regression. Both the oncologist and the surgeon feel like it must be taken out at this point. They feel like the chance that it could haunt us in a year or 2 is too great, regardless of the statistical likelihood of that happening, and it must be removed. Their opinions are, of course, largely influenced by the surgeon's professional opinion that the surgery will not be overly complicated. We spent a long time talking with the surgeon about the risks because we have always been told that surgery is not an option because of the devasting impact it would have on Brandon's mobility. But this surgeon does not feel that those kinds of complications are likely, and we feel comfortable that, in his hands, they aren't likely.

I envisioned that, if the recommendation from San Francisco was to proceed with surgery, we would be racked with worry about what decision to make. Afterall, we can't just erase everything we've heard for the last 2 years. But actually, I for one, feel some peace finally. I truly feel like God has totally led us here to these people, and God is telling us this is the right thing to do for our child. I feel like the recent scare with the fevers and pelvic pain was God's way of showing us with clarity that this is what Brandon needs.

So we will continue to think about it and pray about it, but we are definitely thinking at this point that we will proceed. The surgery will take a full day, so the surgeon needs at least 4 weeks for the scheduling. Brandon will be in the hospital for at least 10 days following the surgery. We have no idea how we will manage this, but we feel sure that that will all fall into place somehow.

Before I go, I have to mention the WONDERFUL manager at this hotel -- the Fisherman's Wharf Marriott. Not only has he given us deeply discounted rooms, but he bought our dinner last night, and he greets me every day with a big hug. He feels like a long lost friend. What a blessing he has been.

That's all for now. Thanks for checking on us and thanks for all the wonderful emails and entries in our guestbook. you have no idea how much it helps us to read them and feel the love and prayers of our friends.

Much love,
Kristin, Mike, Ryan and Brandon

Friday, August 8, 2003 10:19 AM CDT

It's been a relatively quiet week for us -- to the extent anything is ever quiet with 2 little boys running around the house. Although Brandon still seems to have forgotten how to sleep all night, he's been feeling well and making us laugh all week with new phrases like "OH MAAAAAAAAAAAN!". We are anxious for Monday to come and to get on that plane to San Francisco. More disturbing interaction with those in charge here have left us feeling distressed with the "team" here and even more anxious for some thoughtful, knowledgable, competent and compassionate direction and guidance. We feel comfortable that we are heading in the right direction.

I do have some exicting news. Lauren's Run, the family fun run in memory of the two little Laurens who lost their lives to neuroblastoma, will be held in Birmingham for the first time ever in a few weeks. It will be Sun. morning, Sept. 14. We are so excited about this as the Atlanta event has itself raised over $2 million for pediatric cancer research, and the advances that have been made with T-cell therapy are so incredible. We are excited about the potential in Birmingham and plan to celebrate Brandon's 2nd birthday by attending ourselves. Are there any of you Atlantans (or others who aren't too far away) who would like to road trip with us to support this incredible event? We'd love it and what a FUN time we'd have!!! I also can't think of a better, more meaningful way to celebrate Brandon's 2nd birthday than to support this event that has touched our lives so deeply (it's b/c of Lauren's Run that we found the drs in San Fran). Email me if you're interested in going with us and joining in the fun.

We'll try to provide an update from San Fran but don't know if it will be possible. PLEASE lift up those prayers for Brandon and for all of us next week.
Love,
Kristin, Mike, Ryan and Brandon

Friday, August 1, 2003 9:42 AM CDT

Right before Brandon's first birthday, I was lying in bed one night reflecting on the year. I had so many thoughts about what Brandon's diagnosis had meant in our lives. I got up, got a pen and started writing. Some of you have read the letter that resulted:

Dear Brandon,

As you approach your first birthday, I reflect on all that has happened over the last year, for I know that in my life, I may never have another year so filled with such profound and life-changing lessons. These lessons have been a gift, and I hope that I will always remember that, from you, I have learned…

… that “things like this” don’t just happen to other people, and that, although the realization of our vulnerability is frightening, we have to take what comes.

… that in every moment that we think we can’t make it through, we must search deep within to find strength to stand and go on.

… that real “strength” is not a coat of armor that keeps us from breaking down. It questions itself, asks for help now and then, and enables us to do what we think is right.

… that things happen to all of us that change the direction of our lives, and that struggle and adversity deepen our vision and render us wiser than we were before.

… that suffering deepens our level of compassion and prompts us to recognize inspiration wherever it may appear.

… that the sun goes down on bad days and rises again with hope and promise.

… that needing and accepting help is humbling.

… that God’s grace shines through the love and care of friends, who, with a simple gesture, can turn despair into hope.

… that nothing’s more important than family, and that my children are the meaning of life.

And while the lessons have not come easy, I will not look back, because you have given me the fuel to live life more passionately and fully than before. You are a special gift, and you will touch many lives.

I think one of the most profound lessons of, now, the last 2 years has been the fact that God's grace does indeed shine through the love and care of friends and strangers, who, with a gesture they deem to be a simple one, can turn despair into hope, relief, even joy.

I've added to this page the picture you see of Ryan and Brandon with 2 beautiful, HUGE, bears. These arrived yesterday at my office from the President of one of the firm's clients -- the Bearington Collection. This wonderful, kind, generous man sent the bears to Ryan and Brandon, but he can have no idea how much this gesture lifted my spirits. I admit that, since Brandon's recent bone scan and CT, I have been going through the motions -- just waiting to get on that plane to San Francisco. But the gesture of these wonderful bears really lifted my spirits. I know that I will try hard to never miss an opportunity to reach out to someone in need. Wow, what a difference it can make.

Love, Kristin

Sunday, July 27, 2003 2:17 PM EST

Ahhh, 3 fever free days! I'm about to declare Brandon's latest scare "pneumonia" and call it a day. He's trying hard to cooperate. The Augmentin is turning his stomach upside down, and he walks around crying "Mommy! Tummy hurt!" Poor little guy. But what a trooper he is. In between tummy aches, when he's not trying to swipe whatever toy Ryan is playing with out of Ryan's hands, he's happy and playful -- and ever mischievious.

Since today is Sunday, I am declaring it a "new week" and trying to let go of some of the trauma of the last few weeks. They've been utterly terrifying! I will return to work tomorrow for the 2 weeks until we leave for San Francisco. God, please grant me strength to face "work issues" and ability to simply carry on. I'm completely exhausted. But there's no escaping...

I recently read a note written by a mom of a child with a brain tumor. She said, "Considering these trials to be joy just doesn't come naturally, does it? Long ago, on this brain tumor journey, I decided I didn't want endurance. Doesn't matter, got it anyway. My pastor once ended a prayer with me saying 'Lord, if we knew what You know, we'd be praising you for ALL you do and allow.' Sometimes blessings are deeply disguised and carry huge price tags. Good thing we don't get to choose our blessings. I'd have chucked mine a long time ago...short sighted, you know." Like this mom, I happen to be equally short sighted!

But notwithstanding my shortsightedness, I graciously have been reminded of the blessings that continue to surface in the midst of this difficult journey. The kindness of friends and even strangers must be one of the greatest of these blessings. Total strangers, moved by our "story" and our inability to redeem skymiles for the flight to San Francisco, made calls within the ranks at Delta until they reached a "VIP" (very important person) who had the ability to release 4 seats to us for use with sky miles. And then my dear friend Henry Perlowski's wife gave us 50,000 of her own miles so we wouldn't have to buy our tickets. THANK YOU! Inspired by my wonderful friend, Zahnine, I spent 3 hours on the phone this weekend with hotels in San Francisco, and talked to generous manager after manager who is willing to discount the rate for 7 nights in his hotel. Is there any way for me to express our gratitude?!?!!? I can't possibly articulate how thankful we are for all of you.

THANK YOU, THANK YOU, THANK YOU -- to all of you for everything -- for the notes, and emails and phone calls, and for caring enough to continue to read about Brandon and our journey. You will never know how much it means to us.

For those of you whom we will see in the coming weeks, I ask you a simple favor. Please, please take a minute to pay special attention to Ryan. We are trying so hard to make him feel special, and he has been so incredibly unselfish over these last weeks -- not very 5 year-old like at all. It would mean a lot to me if our friends and family would help us by reaching out to him and letting him know what a very special little boy he is.

Love to all of you!
Kristin, Mike, Ryan and Brandon

Wednesday, July 23, 2003 2:53 PM EST

Mike and I want to express our most heartfelt thanks to all of you who have supported us and continue to support us along this difficult journey. We have felt the outpouring of love for our family, and it has meant so much. I have always believed that our unknowing little boy was put on this earth for a special purpose, and it is awesome to see God work through him to touch so many lives.

Brandon is having a good day today after fever since the scans. Monday night, his fever hit 103.7 (under the arm), and he was shaking, he was so hot. I could not leave his side. He also developed a very swollen or enlarged lymph node on the left side of his neck. We saw our pediatrician yesterday. After listening to Brandon's lungs, he expressed his doubt that Brandon has pneumonia but said he has to treat him at this point like something infectious is going on, and so Brandon continues on the antibiotics. Brandon continued with fever all day yesterday and wouldn't eat -- a SURE sign he doesn't feel well as those of you who know Brandon know that his most frequently uttered words are "Mommy, I hungry!" Must get that from me...

My wonderful mom slept over last night so we could get some sleep and, of course, as he always does when "Nonnie" is here, Brandon slept well. Do you think I can convince her that she needs to spend at least 2 nights a week with us?!?! He's been eating well today and no fever so far, although the fever usually comes in the afternoons and evenings. So we'll see.

I still haven't been able to reach Brandon's oncologist, Dr. George. I'd like his input about the scans and Brandon's continued fever and, now, huge lymph node. Contrary to the suggestion of many, I will probably NOT mention the outrageous behavior of his partner on Monday as I simply cannot afford to stir up the pot any more than I have with my letters following the March scans.

We want to share a bit of good news with you. Our friend, little Carter Martin (6) who is battling Ewing's Sarcoma (bone cancer), just got his cast off yesterday, and the Martin family got the great news that Carter's bone is healing much better than the dr anticipated. This is such great news. We are so happy. Please read about Carter at www.caringbridge.org/ga/cartermartin and keep the Martin family in your prayers. They are wonderful people and have become such special, important friends to us.

Please continue to pray for Brandon's full recovery from whatever's going on. Someone said recently that, in the world of childhood cancer, the "unknown" is a difficult place to be. Please pray that we will be delivered from this place soon.

Love to all of you,
Kristin, Mike, Ryan and Brandon

PART I - Monday, July 21, 2003 6:08 PM EST and PART II 10:02 EST

What a day! Brandon had a CT of his chest, abdomen and pelvis today. NO NEW NEUROBLASTOMA WAS DETECTED ON THE SCAN! The scan did show 2 areas of pneumonia on his lungs, so we are hoping that this explains the fevers, which continue. Indeed, Brandon is burning up with fever right now.

We do feel relieved and are waiting to talk with the doctors in San Fran to get their opinions on whether it is necessary to proceed with the MIBG scan or not (We were told it is more sensitive and can pick up disease that would not show up on a CT or bone scan). I hope they tell us that we can stop or that the MIBG can wait for San Fran, as poor Brandon has been through a lot these last few days. And he doesn't feel well, so it would be great to give the poor little guy a break. But we will do whatever is necessary.

I wish I could stop here, but this update would not be complete without a report of the end of the day. We had an incredibly disturbing exchange with the doctor who relayed the results to us. Dr. George, our regular oncologist, was out, so we saw one of his partners, a guy, I might mention, who knows either very little or maybe nothing about Brandon. He completely trivialized this whole scare, told us they are "cancer doctors" and the kids they treat are "sick kids" and that we just need to see our pediatrician. He acted like we just put our child through a series of unnecessary scans for nothing and treated us like "don't call us every time your child has a fever". When I got angry, he said, "I'm sorry, I don't mean to trivialize this."

Brandon was burning up with fever, and this doctor was completely uninterested in that -- i guess because he did not view Brandon's fever to be "cancer related". He would not discuss the pneumonia because "we treat cancer, not lungs." I paged our pediatrician, who immediately started Brandon on antibiotics and is going to see him in the morning.

I don't know how we could've gotten such good news (no new disease) and walked out of there so angry. Actually, "angry" is not nearly strong enough. The interaction we just had with this doctor is a perfect example of why the last 22 months have been so difficult for us. One doctor acts like Brandon's condition is a potentially life-threatening emergency, the next acts like we are overly-hysterical parents who need to get a life. No wonder I'm completely crazy at this point. I think I start to hyperventilate when I even drive near a hospital!

That's enough for now. I am going to focus on the good news and try to let the rest go. Thanks for all of the kind expressions of concern and care. We feel like the urgent crisis is behind us and we can concentrate on getting Brandon well. I'll update with the view from San Fran when we have it.

UPDATE PART II

I'm convinced that the doctor and clinical nurse specialist in San Fran have wings and a halo. They are absolutely our link to sanity. The clinical nurse specialist called back very quickly and talked to me at length about the scans that were done, what they do and don't mean, what else needs to be done and the "delivery" by the doctor here.

In a nutshell, she said that their opinion of the need for Brandon to come to San Fran is unchanged by the clean bone scan and CT. She explained that many neuroblastoma patients are followed by MRI and MIBG scans (NOT CTs and definitely not bone scans) precisely b/c they are particularly sensitive to neuroblastoma and can detect disease undetectable on the CT and bone scan. She said they are encouraged in San Fran that Brandon does not appear to have "raging neuroblastoma" in his body, but they feel an MIBG scan is still critical for a complete picture of his condition and even, to some extent, his prognosis. The good news is that they believe it can wait until we get to San Fran. So the MIBG will take place over Aug 12 & 13.

This wonderful CNS (clinical nurse specialist) really appreciates the level of stress and "crisis" all of this causes in our lives. She feels like, while they don't have "magic answers" in San Fran, our one week spent with their doctors will hopefully relieve months of anxiety. It is not difficult to imagine some time in the future when Brandon gets another bout of unexplained fevers and complains that something else hurts. As it stands now, he would have to go through all the scans, etc. to see if something "bad" was happening. I cannot imagine continuously putting him through this. My heart goes out to every family that has to go through this -- there are so many. For us, I hope somehow this scenario will be either minimized or eliminated with the recommendations from the drs in San Fran.

These people in San Fran are simply the most compassionate, caring people I have ever met. I am forever grateful for the way they have related to me -- the "hysterical mother"!

One more interesting point -- the CNS said she's not so sure the "pneumonia" they saw on the CT scan is really that. She said with the anesthesia Brandon received on Friday with the bone scan, the spots on his lungs could clearly be residual and not actually pneumonia. She said their recommendation would be to try antibiotics to see if it clears up. I almost hope Brandon DOES have pneumonia. At least that would explain the fevers. Without that "diagnosis", we have only remaining questions.

Since the cancer doctors here "don't do lungs", we'll see the pediatrician in the morning and see what they can figure out. Poor Brandon. Here's to (HOPEFULLY!) a restful night for the Connor family and for all of you who have lost sleep over our "crisis." What dear friends we have!
THANK YOU!
Love,
Kristin, Mike, Ryan and Brandon

Friday, July 18, 2003 5:00 PM EST

Good news today. The bone scan was clean. We had a scare. The scans showed an area in Brandon's pelvis that clearly lit up -- it looked like a nice round mass exactly where Brandon has been complaining of pain. We nearly passed out. I know I for one couldn't breathe. As we all stared at the screen, the technician decided to empty Brandon's bladder by catheter. When she came back, the area of concern was gone. I thought they were going to have to pick both Mike and I up off the floor. No other abnormalities appeared.

We are also so pleased to report that, for the first time, our experience at Scottish Rite was wonderful. We had the 2 most caring, wonderful nurses. From the moment we mentioned the prior difficulties starting IVs on Brandon (his veins blow), they were concerned only with making the whole experience less traumatic for him. They gave him an oral "relaxer" (we called it "goofy juice") that made him loopy. I think for a while anyway, he didn't really care what they did to him. Then, they put a topical cream on the skin surrounding his 3 best veins to numb the areas. They got the IV the FIRST time -- A FIRST!! -- and Brandon hardly cried.

Then the sedation doctor thoughtfully considered Brandon's reaction coming out of sedation with his last scan and recommended a different drug with a much shorter life. It was much better for Brandon, and he woke up much better, happier and less agitated. He's running around now like today was just any other day.

This, of course, is the way it should be, but we felt like we were at a different hospital in a different city. The wonderful nurses even arranged for their nurse friend on duty Monday to care for Brandon during his CT scan. They even gave us his contrast and precise instructions so we can give it to him at home instead of having to come to the hospital 3 hours early. Everything about today, thanks to those awesome nurses, was about making this incredibly stressful, traumatic time easier for both Brandon and us. We are so grateful to them.

We are aware that Monday's scan is really the one of the most importance. Although the bone scan was necessary to rule out metastatic disease in the bones, we know that it would not reveal anything except for disease in the bones. In other words, if Brandon has another mass in his abdomen that's pressing on a nerve and causing the pain, it would not have shown up today. But like we told the doctor, we'll take any clean scan we can get.

Now the challenge is to put this out of our minds as much as we can until Monday. Monday seems like an eternity away, and we'll have to think of things to keep us REALLY busy this weekend so we don't dwell on it all weekend.

I know that I have felt like I will collapse under the weight of this worry. But we are taking one tiny baby step at a time and muddling through. Thanks for checking on us and, especially, thanks for all of the prayers. Keep praying!!

Love,
Kristin, Mike, Ryan and Brandon

Thursday, July 17, 2003 2:41 PM CDT

Brandon will have a bone scan tomorrow and a CT of his chest, abdomen and pelvis on Monday. We are praying these scans are clean. If both are negative, he will likely have to have an MIBG scan next week. This nuclear medicine scan is very sensitive and specific for neuroblastoma and could pick up disease that doesn't show up on the other scans. Of course, we are praying they are all negative and this has just been one awful scare.

We are beside ourselves with worry. I am trying to summon that faith that everything will be ok, but it is not easy. Dr. Matthay's nurse (San Francisco) told me that virtually all the kids they see with bad disease had a 3 to 6 month history of vague virus like symptoms. She said it's not difficult to project ourselves forward 3 to 6 months in this case and look back and say "There were signs -- fever, pain..." She said we have no choice but to look and know for sure.

I definitely hit a brick wall yesterday and do not feel that I can do or concentrate on anything at all until we know the results of these scans. I have asked for a little time off to deal with this, and the people at my wonderful firm have been so supportive and so gracious. I am reminded how lucky I am to be associated with them.

We are overwhelmed. Brandon needs your prayers, and so do we. I'll update when I can.
Love,
Kristin

Wednesday, July 16, 2003 10:40 AM EST

Just a quick update. Brandon was up most of the night Monday with a high fever. He had a great day yesterday with no fever. By 7:00 last night, the fever was coming back. The most alarming event was at bath time, when he cried and cried, telling me he "hurt". Again, I could not tell exactly what hurt, but he kept his hands on his pelvis. He cried until he went to sleep. he was up from about 2 AM until about 5:30 AM but no high fever. I have no idea...I have spoken with his pediatrician already this morning who says the oncologist must watch this "sensitively." I put a call into Dr. George but no word yet. I am worried and exhausted. Please lift up those prayers!

Monday, July 14, 2003 10:46 PM EST

After a great weekend, Brandon's fever returned last night. Consequently, he and I spent most of today at Scottish Rite with Dr. George. Dr. George explained that Brandon's symptoms (off and on fever + intermittent pain) could be signs of disease in his bones. He said this would more commonly occur with a relapse than our particular circumstances, but since no staging was done in the first place with Brandon, it's hard to know what we're dealing with. Of course, this could be some kind of virus and nothing to worry about. And Dr. George was encouraged by how "well" Brandon was acting.

More labs were done and now we will await the results. I understand that these will not be conclusive but will aid Dr. George in deciding whether to proceed with a bone scan. If Brandon's fevers don't subside this week, regardless of the lab results, a bone scan will be done.

Of course, while happy and fever free at the doctor's office, by 6:00 tonight, Brandon's fever was back over 100. We'll see what tonight holds in store.

We are holding onto hope that this is nothing and that I have overreacted to some kind of virus. But the reality that this could be disease in his bones is overwhelming.

We'll update when know more.

Sunday, July 13, 2003 11:09 EST

What a week last week was! Whew - I think I aged 20 years. For about the last 6 weeks, Brandon has been complaining intermittenly of pain in his pelvic area. Because his complaints were sporadic and weren't easily interpreted, I guess I had convinced myself that it was nothing to worry about. Talk about losing the forest through the trees! I mentioned the pain to his oncologist, who told me that in that area of his body, we ought to pay attention to complaints of pain. Brandon also had been running a low grade fever off and on, so I started to grow a little bit concerned. One night last week, I came across some information that said that, although not particularly common, neuroblastoma can occur in the pelvis, and that one of the signs/symptoms can be unexplained episodes of pain. Another sign can be low grade fevers. I completely freaked out. I kept thinking, "Is today the day our nightmare begins, or tomorrow, or the next day, or is our nightmare having to always wonder when or if our nightmare will begin!?"

Brandon's off and on low grade fevers continued, and on Friday, his fever rose to 102.7. So we had to go to Scottish Rite for labs, which shed no light on the fever. Of course, he could have a virus -- this could be anything or nothing. What's most concerning to me is the fact that he has fever one day and nothing the next, then fever again the next day and then he's fine the next day. Saturday, the day after the 102.7 fever, he was completely fine -- no sign of anything. Maybe he's just a normal 22 month old with a strange virus. But I am really worried. I never thought the day would come when I would be wishing for one of those nasty old ear infections! :) Poor Mike was out of town all week and I'm sure was growing anxious with my (probably highly irrational) reports. We're all glad to have him home.

Brandon's oncologist will see him tomorrow or Tues. He told me that he will likely have to order scans to make sure nothing is going on in the pelvis or elsewhere. I hate to put Brandon through more sedation for more scans, but we just have to get to the bottom of this.

We also heard from San Fran and will be out there Aug. 11 through Aug. 18. Brandon will have multiple scans (I think -- depends on what happens here this week) and we will consult with the oncologist and the surgeon, at least. I understand that his case was presented to the tumor board last week and the surgeon reviewed at least some of his films. I was told that the surgeon apparently said at the meeting that he believes resection of Brandon's tumor involves "minimal surgical risk". Of course, this is contrary to EVERYTHING we've ever heard about the option of surgery. I remember the day the doctor here told us that we would likely paralyze our child if we opted to put him through surgery (yep, he actually said it like that). I keep thinking that someone is really wrong about the risks. We are anxious to talk to the dr in San Fran and question him about surgery and the potential risks. We have a lot of "history" we have to review with him -- the risks of nerve damage, severe scoliosis, paralysis, etc...

Notwithstanding the utter anguish of last week, the week had it's great moments. Ryan's 5th birthday was just awesome. I think my favorite moment was watching him wake up, look himself over with a grin, shake his head and say, "Yep, I'm bigger!" Priceless!! He had a great day, and really a great weekend. The CURE family picnic was great fun, and we loved seeing our friends, Scott and Leigh Ann Martin and meeting brave little Carter who is battling Ewing's Sarcoma (see www.caringbridge.org/ga/cartermartin) and meeting big brother Candler. Ryan's made a new "best friend" since Carter generously shared his new Pokemon cards with Ryan. Wow!

Today was Ryan's birthday party. We had a great time playing putt putt at Funtasia, even in the July heat!

I was rocking Brandon a little while ago and holding on tight. I prayed that God will heal his little body and will lead us in our decision making. We are aware of how totally unqualified we are to be making the decision we know are right around the bend. Please pray that we will find peace in these decisions and that we can put the urgency of all of this behind us and get on with our lives.

Thanks for checking in and for caring about our journey.
Love,
Kristin, Mike, "5 year old" Ryan, and Brandon

Monday, July 7, 2003 11:25 PM EDT

We still await word from San Francisco about when Brandon will be seen. The scheduler just returned from vacation today, so we're hoping to have a real date this week. We understand that the doctor wants Brandon to be seen by their neurosurgeon to assess all of the risks of surgery as well as to determine how difficult surgery will become from an anatomical standpoint as Brandon's body grows. We know that the neurosurgeon in Atlanta will not do this surgery as he feels it is far too risky and too likely to cause spinal cord compression. We will be interested in this surgeon's opinion, although, knowing what we do, it's hard to believe it could be different. But our minds are open.

We also know that several new scans will be done, and Brandon will have to be sedated for all of them. I dread the procedures (of course, this coming from one who used to dread taking the kids for vaccinations!). But I know they are necessary, and I am relieved we will have the information these tests and scans will provide.

While we waited last week, I became aware of important medical information just coming out of a summer conference on neuroblastoma. Some of the information was alarming to me as it applies to Brandon's case. I've always believed deep down that, in the end, Brandon will be ok and will not have to suffer through chemo and surgery. Maybe that's a form of denial, a coping mechanism. With the new medical information on top of the discussions I've had with the dr in San Francisco, for the first time, my confidence in our happy ending was badly shaken. By the end of the weekend, I felt like I was completely and quietly coming unraveled. I watched the boys play, laughing and having fun, but felt on the inside like the worry and anguish were suffocating me. The weight of 2 years of the stress seems like it's crashing down on my shoulders. I desperately just want this nightmare to be "over". I'm totally worn out by the emotional rollercoaster of the past 2 years. I want to hold on to Brandon as tight as I can and never let him go. I want to keep him safe and make him well.

But those of you who know Brandon know that I could never hold him tight and never let him go anyway. He would squirm out of my arms in a split second -- what a character!

We did have a great 4th of July. The boys decorated their wagon and paraded through the neighborhood with the other kids. It was a ball, and there were lots of festivities at the pool and with friends. Brandon can't stop talking about "Nu Nu" and his fireworks (our friend, Newton, who put on his own very impressive fireworks show), and Ryan wants to know when his daddy can compete in the next "belly flop" contest.

Mike is spending the week in San Antonio for work. As much as we miss him, his timing is probably great. I'm far too busy with work, the boys, the dogs, the house, etc. by myself to wallow too much. I just want to get on with this. Let's get to San Francisco and deal with the issues.

Ryan turns FIVE on Friday, and I think he asks about every 30 mintues how many more days until his birthday. He is SO excited. I absolutely cannot believe he is almost five and am reminded how fast time is passing. We'll do the obligatory Chuck E Cheese birthday dinner and have his party on Sunday. Saturday will be a great day spent at CURE's annual family picnic.

Thanks for all the prayers and support. And thanks for caring about our journey.
Much love,
Kristin, Mike, Ryan and Brandon

Monday, June 30, 2003 8:54 PM CDT

Now that we've decided to make the trip west, I suppose it's time to hurry up and wait a little while. Tis the season for summer vacations, and it seems that all the doctors Brandon needs to see will not be in the same place at the same time until early August, at the earliest. We have strongly requested that they NOT ask us to come out to San Francisco in late August since Ryan will be transitioning to a new school with all new peers, new teachers, new everything. We do not want his transition to be made any more difficult by our need to be away. We want to be here with him, celebrating his new beginnings. We are so blessed with Ryan. He's such a sweet child -- he's so special. While he knows that his brother has cancer, he could hardly understand the weight of that word. Although, I suspect Ryan understands more than we think. A few weeks ago, Ryan wouldn't drink from Brandon's water bottle b/c he "doesn't want to get cancer." Then about a week later, driving home one day and completely out of the blue, he asked, "Mommy, does Brandon's cancer mean he's going to die?" I told him that I hope not and that Brandon has to go to see so many special doctors so that they can keep him well. He seemed satisfied with that answer...I wish I could forget the question.

We are always mindful of the blessings that have resulted from this difficult circumstance. We have learned so much, and in many ways, I know my life has really been redirected. We cling to the blessings, to the times that we truly feel God's hand leading us, to the important, life-changing lessons we continue to learn from this. I wouldn't give back any of that. But I sure do wish all these lessons could've been learned some other way.

Throughout the last 21 months, I have been haunted by one question in particular. If the experts think that children are often born with neuroblastoma but aren't diagnosed until later when they begin to experience symptoms (when usually their cancer has spread aggressively), how do they know that Brandon isn't one of THOSE children? Brandon's tumor was found in utero during an ultrasound. We wouldn't know about it but for that ultrasound. So had we never had the ultrasound, how do we know that we wouldn't have learned of his tumor the way most other families do -- when he starts experiencing symptoms b/c the cancer cells become unstable and start to spread? Since it does not look like his tumor is going away on its own, as we'd all hoped, how do we know it isn't this other kind of neuroblastoma, just sitting and waiting for the right day?

The doctors here differ in their response when asked that question. Some reassure us that it won't happen (in my humble opinion, they have no data to support this conclusion) while others admit that little is known about what is likely to happen. Doctors at other institutions across the country also seem to differ with their thoughts on this. Dr. Matthay in California told me that in 80% of the cases like Brandon's, the children do ok. But in 20% of the cases, the tumors do exactly as I fear -- sit in wait for some period of time and then, for some unknown reason one day, just start to take off. And of those 20%, only 40% live 5 years or longer. Not great statistics from my seat.

Dr. Matthay's experience is what's taking us to San Francisco. She feels like we don't have enough information about Brandon's tumor to guess (it's still too much of a guess!) what it's going to do. So she's going to try to find out more pieces of the puzzle, I believe, in hopes of being able to recognize if and when the benefits of intervention begin to outweigh the risks. Of course, we all hope that never happens. I for one can't imagine letting anyone take my very active, happy, care free little boy and do surgery that could paralyze him, or give him toxic chemotherapy if I don't know FOR SURE it's necessary. But the true difficulty of this situation is that there simply is no black and white. It's all gray. We may never know FOR SURE what approach is the right approach.

In the weeks since I created this web page, 2 of my special friends, one of whom has a son fighting cancer right now, told me not to doubt our decisions. "Make the best decisions you can make with the information you have today, and don't look back." Maybe if I say it over and over again, I'll find a way to do it. I know it's true, but how do you do it? How do you overcome the doubt and fear and second guessing? It may be the hardest part of this for me. I once told someone that it takes me about 5 minutes to second guess what I decided 5 minutes ago. Without the freedom from this doubt and fear, there is no peace. But I have no idea how to make a decision and not look back, particularly when the decision is for my very dependent child.

Of course, this is all complicated by our experiences over the last 21 months -- constant difficulties with scans, errors with results, all of which I have had to discover and resolve on my own. It often feels like no one but us is paying any attention to Brandon, and I have thought a little too seriously about throwing in the towel on my legal career and going to medical school so I can take care of him myself. At least then, I'd know that someone was paying some attention. It's hard to trust and have any level of confidence given our experiences.

This is what makes jumping back into this (consulting with a new doctor, more scans and new opinions) so difficult. Sometimes when we're in a period of "rest", i.e. in between scans and clinic appointments, we can try really hard to forget this problem exists. We carry on just like any other busy, happy family. And when the next scan period rolls around, it smacks me in the face. The reality of it all, not to mention the difficulty we always seem to have with the "process" itself, is so traumatizing each time. Before I talked to the dr at City of Hope and he suggested that we consult with Dr. Matthay, we were in one of these "rest" periods. Mike and I wondered if we really wanted to "open up the can of worms." But, as someone so delicately reminded me, the can of worms exists one way or another.

Maybe God is taking us to this doctor BECAUSE I've always had such deep and intense anxiety over the issue I described above. Maybe He's taking us to get some more answers to these questions that haunt me every single day on some level. Maybe we will come away with some level of peace. And if we don't, maybe at least I'll learn some important lessons about how to live with the uncertainty.

Thanks for caring about our journey.
Much love,
Kristin, Mike, Ryan and Brandon

Wednesday, June 25, 2003 10:11 PM CDT

Since so many people have asked us "why San Francisco?" and "why now?", I thought I'd try to answer those questions here. It's a long story (you know me, isn't everything a long story?!), so before I go there, I'll give the short answer: the referral came from a doctor I met at the City of Hope in Southern California. He says this doctor has the "most concentrated brain power of any neuroblastoma specialist" and that she has access to unpublished data that our doctors here probably don't know about. He put me in touch with her, and she wants to see Brandon. That's the short story.

The longer story goes something like this: As the result of a telephone call this spring from a long time family friend, we participated in May of this year for the first time in an event called Lauren's Run. Lauren's Run is an incredible event -- It's a run for kids raising money to help other kids who are battling cancer. It was started 11 years ago, in honor of a little girl named Lauren Zagoria from Atlanta who lost her life to neuroblastoma, by her parents, Janis and Marvin Zagoria. In 2001, neuroblastoma claimed the life of another little girl named Lauren Kochman, also of Atlanta, and her parents, Heather and Gil Kochman, joined the event as co-chairs. This is truly an awesome event. These wonderful families have channelled their grief in such a positive way -- to help other children like ours, battling the same disease that took the lives of their beautiful girls. All the money that is raised by Lauren's Run (in excess of $2 million to date) goes toward pediatric cancer research at the City of Hope.

After the race in May, at which Brandon was singled out and recognized, the folks in the Atlanta office of City of Hope sent me a bunch of literature about what they were doing with the Lauren's Run money, and I was absolutely floored. The progress they're making with pediatric cancer research at City of Hope and TREATMENTS not only for neuroblastoma but also adult cancers is remarkable. I spent time talking with the office here as well as the moms of the 2 Laurens, and for the first time in my life, I truly felt "called" to be a part of this event, and to join the effort to raise money to help fund this amazing research. It is incredibly promising. And its promise is truly something we can all have hope in since virtually every family is affected by cancer in one way or another. The advances are transferrable to adult cancers and potentially other diseases like diabetes and HIV. I only hope they HURRY!

I recently was lucky enough to have the opportunity to talk with the doctor at City of Hope who heads up the research program, and after discussing Brandon's case, he really encouraged me to talk with the doctor in San Francisco. I've talked with so many doctors at this point that talking to someone else and getting yet another opinion to confuse me further was not necessarily something I was excited about. When I asked him if it was really necessary, he responded, "Well, I think you deserve the opportunity to talk to a REAL expert in this field. Don't you think you deserve that opportunity?" Well, yeah, actually, I do think so...

I sent all of Brandon's records and scans to Dr. Matthay in California. She strongly believes another critical scan, called an MIBG scan (nuclear medicine scan) needs to be done. Her clinical nurse specialist told me tonight, "Not only are you in an impossible situation, but you're there without a full deck."

So we'll go off to San Francisco in search of the "missing cards." Maybe we are doing what our doctor here thinks, i.e. flying across the country in search of answers that don't exist. But we weren't looking for another doctor with another opinion, and this just kind of fell from the clouds right into our laps. I may be crazy (ok, I admit it, I'm DEFINITELY crazy at this point), but I honestly feel like this one is coming straight from God -- He brought us into Lauren's Run which led to the contact who is getting us to this doctor. We just have to go.

In the end, I suppose I expect that she will still conclude that surgery isn't really an option and that we don't have a choice but to continue to wait and watch and, of course, worry. But we just have to go and find out for sure. And if that is what happens, well, at least we'll know that ALL the tests we've been practically begging for have been done, that SOMEONE has finally paid a little attention to our sweet child (maybe THAT'S why he's so loud!?!?), and maybe, just maybe, we'll finally be able to sleep at night. Well, I doubt that, but it's nice to dream.

We know we can't do this without all of you. It's been such an incredibly difficult journey so far. Instead of getting easier, in some ways, it's become more difficult. Maybe it's because with each passing month, the weight of the worry gets a little heavier. But having caring friends who understand that this isn't something we can just lock in the closet and pretend doesn't exist (although we'd like to) and who understand that this is going to be with us, and PAINFULLY with us, for a long, long time, helps us get through the tough days. Thankfully, most of our days are pretty happy, because God gave us the most beautiful, fun boys in the world. But man do we have our moments!

Thanks for checking in. We'll let you know as our plans to head West become firm.
Love,
Kristin, Mike, Ryan and Brandon

Saturday, June 21, 2003 9:56 PM CDT

Hello, friends. We have created this web page as a way to keep you all informed as to what's going on in Brandon's fight against neuroblastoma. It feels kind of funny to type those words, as I know many of you must think, "What fight?" We are so blessed and so thankful that Brandon continues to thrive and is such a healthy and happy (and did I mention ACTIVE???) 21 month old. It's difficult to believe there could be anything wrong with his health by looking at him, watching him try to literally climb trees and otherwise keep up with his big brother. (My mom said a few weeks ago, "I think he thinks he's 5!). He's absolutely hilarious and fills our house with laughter and NOISE!

But the knowledge of what sits in Brandon's body never goes away, notwithstanding our most fervent wishes. I imagine that most of you reading this know our story:

Our journey into the world of childhood cancer began in August 2001, when an ultrasound done during my pregnancy revealed a mass near our baby's spine. No one knew what it was or how it would affect the his health. For three long weeks we waited until, on September 13, 2001, our son Brandon was born. He was beautiful and healthy. We were convinced that nothing was wrong with him. I remember thinking that it was all a big mistake and that the tumor wasn't really there at all.

Just a few weeks later, our real nightmare began. Brandon had his first MRI and our doctor delivered the news that not only was the tumor real, it was neuroblastoma, one of the most aggressive and often deadly form of childhood cancers. We were devastated. Looking at our beautiful baby, I couldn’t believe it was true. I will never forget that night. I remember watching him sleep and asking over and over, "How can babies be born with cancer? What kind of world is this?"

I wonder if we've gotten a real sound night's sleep since. We have become painfully aware of how little is known about infantile neuroblastoma. Sometimes it regresses on its own with no intervention, so we were urged in the beginning to “wait and see” if we would be lucky. While we were hopeful, we were scared to death. As I read everything I could find on the disease, I became consumed with fear with the possibility that we were making the wrong decision by giving this nasty cancer time to progress. Were we endangering Brandon's life? That question still absolutely haunts me today.

Brandon has continued to have frequent scans, which have been largely “inconclusive” There has been little agreement among doctors about much of anything, including what his tumor is doing -- is it bigger, smaller, the same??? We do believe that it is somewhat smaller than it was initially, but it has not regressed and gone away as we have always hoped and prayed it would do.

We have consulted with "experts" across the country. The opinions have differed drastically. This has not allowed us to sleep very easily at night. If they can't agree, how can we know what to do for our child? All we want is what's best for him. But how do we know what that is when the experts don't seem to agree on anything -- Maybe they don't know either.

We feel like God has recently taken our hands and is leading us to San Francisco to a doctor named Dr. Kate Matthay. She is "world-renowned" in the field of neuroblastoma, and she has expressed grave concerns that Brandon is approaching age 2, his tumor remains, and certain critical tests have not been done. She had validated all the fears I have harbored for 21 months, and I am scared to death. We are really looking to God to guide us. We will have a very difficult time making any decisions at this point with all that's gone before coupled with our wealth of knowledge as to how devastating this disease can be.

We ask for your prayers as we entrust our child's care to this expert, and, more than that, we ask for your prayers that God will guide the researchers toward a cure for this terrible, terrible disease called cancer.

Much love,
Kristin, Mike, Ryan and Brandon

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