Thursday, August 8, 2013

The Why

January 21, 2009 was a long time ago.

It's been 4 1/2 years since Brady's diagnosis, but it feels more like 10 years.

I think it has more to do with the fact that we have been busy helping 4 babies grow into kids than anything else, but nonetheless, it seems like ages ago.

There are days when I am tired and I start wondering if we should continue raising money for pediatric cancer causes. I am embarrassed to admit that, but there are days when homework, t ball schedules, illness, and just the ordinary challenges of parenting convince me that I don't have the energy for anything else. I begin to wonder...why?

But then a catch a glimpse of a picture that sits on a shelf in my living room. In the picture, a smiley-faced boy about 20 months old stares back at me with a bald head. Although you can't see it in the picture, under his footy pajamas are two tubes that stick out of his chest awaiting the next round of chemotherapy. When I see that picture I can literally feel my heart break as I remember being THAT mom holding THAT child.

That is WHY.

Sometimes it is not the limits of my own time and energy that make me question the small efforts we make in this fight. Sometimes I just start to wonder if what we try and do really makes a difference. Our goal this year is to hit $10,000 in total monies raised in the past 5 years. That sounds like a ton of money, but in actuality, $10,000 only funds approximately 200 hours of research. Is that enough to make a difference?

But then I read my email for the day. Each week I hear of a child (some weeks 2, 3, or more) who have lost their battle with Neuroblastoma. I read about families in other countries who are desperately trying to fund a trip to the US to meet with a doctor who might be able to save their child. I read about families who have lost babies, Kindergarteners, and teenagers to slow, agonizing deaths because of cancer. I read about families who have been financially devastated, whose faith has been shattered, and marriages that have ended because of the devastation cancer causes.

And I am reminded...This is WHY.

When I see Brady running on the soccer field, writing his name on top of his homework paper, and chasing his brother across the yard, I am reminded of the miracles that have brought us to this place. He is a survivor, and we are so humbly thankful for that. But just like 2/3 of all pediatric cancer survivors, he deals with long term side effects from his treatment. He cannot sweat out of half of his upper body and face which means he gets hot (and stinky!) faster than other kids. He is at increased risk of scoliosis and other spine issues in years to come because of his radical surgeries. And then there is "the spot" that we continue to monitor.

And then I know it. This is WHY.

Please know that we understand that there are hundreds and hundreds of causes that need your support. Please know that the prayers you so willingly say on our behalf mean more than any financial contribution you can make.

But if you feel led to do so, please help us by supporting our stand this year. It is our 5th Annual Alex's Stand and we are hoping to make at least $1,650 in order to hit that $10,000. Details about how you can help can be found on my Facebook page or below.

Williams Family 5th Annual Alex's Lemonade Stand
September 1st and 2nd, 2013 at the Oakfield Labor Days in the Park Celebration

We cannot do this without the amazing support of our friends, family,
and community. Here is how you can help:

1. We need volunteers to work at the stand! Working is easy and a great
opportunity for kids and families to get involved. Let me know if you can
cover one of the shifts below:
Sunday September 1st

Monday September 2nd
*Our family has been asked to help judge the parade this year! I am really
in need of some great volunteers to help before/during/after the parade!*
5:00-7:00 (take down-muscles needed!)

2. Help us fund the supplies needed to have our stand!
--Donate a Walmart gift card (approximately $80 needed to purchase
ice and baking supplies)
--Buy a large container of Country Time Lemonade (yellow) at
BJs for $6.99. We need approximately 8 of these. Let me know if you
can help in this area. Lemonade can be dropped off on my back porch
or I can pick it up from you:)
--We also need approximately $70 in supplies from Batavia Restaurant
Supplies (cups and boxes for baked goods). If you would like to make a
donation toward these supplies, you can write a check to Megan
Williams or better yet, come shopping with me:)
-$150 has already been spent on application fees and health department
certification. THANK YOU FOR YOUR HELP with our up front costs!
Your donation toward supplies will multiply into a GREAT BIG
DONATION to Alex's!

3. Make a donation directly to our Alex's page. This donation is
tax deductible and will count toward our total. Follow this link:

4. Join our baking team! Every year we bake hundreds of lemon cookies,
lemon bars, and lemon poppy seed muffins to sell. This is always a fun time
and we are generally done in less than 4 hours. Our baking day will most
likely be Saturday August 31st, later in the day. Details to come.

Thank you friends, family, and neighbors for the love and support
you continue to show Brady. Let's all come together again and
do something for the many, many kids still in the fight.

Galations 6:9
 Let us not become weary in doing good,
for at the proper time we will reap a harvest if
we do not give up.

With hope,

Saturday, April 6, 2013

Tell Me About Miracles

Sometimes when you least expect it, God blesses you with a moment so powerful, so unforgettable that it takes your breath away. In those moments there is no way a person on this earth could convince you that the Holy Spirit isn't as present in the room as the oxygen you breath.

I had a moment like that this evening.

Tonight looked like any other Saturday night in our busy home. Matt was upstairs bathing the kids while I was in the basement piecing together 4 outfits for them to wear to church tomorrow morning. I pulled a few dress shirts and dresses from the ironing mountain  pile and opened up the ironing board. I began my task and just as I did I heard the sound of a basketball bouncing on the concrete floor.

I looked up to see my soon-to-be six year old Brady who said, "Hey mom, watcha doin?"

"I'm ironing something for you to wear to church tomorrow buddy. You are going to be super handsome!"

"Hey mom, watch me dribble! I'm better than Michael Jordan!" he said as he rapidly switched hands back and forth to bounce the ball.

"Michael Jordan, huh? Maybe you will be someday, but for today, you are a miracle!"

"What do you mean a miracle? Because I'm dribbling?"

And so it began. It started like other conversations that we have had over the past 4 years. As a parent to a young cancer survivor, I'm challenged as to how and when I should "spill the beans" about the whole cancer thing to my innocent child. I liken it an adoptive child's knowledge of how he comes to be part of his adoptive family. I think experts agree that the concept of adoption should always be part of a child's life story, but perhaps the details should be explained over time as the child matures. This is the same sort of philosophy Matt and I have used with Brady so far.

"You are a miracle Brady because you are dribbling that ball. And 4 years ago today you were a very sick boy who was far from home having surgery."

"Oh, I remember that story, about my scars. So what happened that day that was a miracle, mom?" he asked still dribbling.

I  told the story of April 6, 2009. The day the skies poured rain and we walked him from the
Ronald Mc Donald house in Manhattan to the hospital where the best Neuroblastoma surgeon in the world was waiting. I told him a few details like that, but mostly I told him about the miracles.

"You had an opertaion to take the rest of the cancer out of your body. The doctor told us that you would have to go to a different hospital after your surgery to a very special place (ICU). You would have to stay there for a few weeks at least and that we wouldn't be able to talk to you or see you awake for a while. But there were hundreds and hundreds of people who prayed, Brady."

"So did that happen mom?"

"No it didn't! God heard the prayers! You didn't have to go to a different hospital. You didn't need a special breathing machine, and you woke up very quickly. And the coolest part of the story? We brought you home 5 DAYS LATER! It was a miracle!"

dribble.dribble.dribble....Then he stopped. He jumped up in my office chair, basket ball in hand and said, "Tell me about the other miracles God has done for me."

My heart pounded. The tears came. Could there be a more precious moment in time for a mom? My thoughts raced, "Oh God, how you have redeemed this terrible darkness in our past. This moment, this time with my child, I thank you for showing me the beauty you have created from what was so evil."

"Well buddy. There have been a lot of miracles. You are a triplet! That's a miracle!"

"So Eli and Cara are miracles too?" he asked with a scrunched nose. "Absolutely.And Allie, too" I said.

I went on to tell Brady that he was a baby something wasn't right. He wasn't walking like his brother and sister and he was upset a lot. He listened as he held that basketball, he listened with such a focus. I kept ironing to keep myself from sobbing as I told him how no one could figure out what was wrong. I told him that God gave me a strong feeling that we needed to keep searching for the reason that he wasn't walking. God told my heart that something was very wrong. The way God speaks to mothers, deep in their soul, that is miraculous.

I could have told him about the insurance issues we had leading up to his diagnosis. Our requests to scan his back had been denied multiple times by our insurance. Miraculously we had to change our insurance just weeks before his scheduled brain scan. And miraculously, the new insurance agreed to scan his back where doctors would find a raging tumor. These aren't details for a 5 year old boy, but certainly will knock his socks off someday.

His face sort of settled on top of the basketball as I told him that he came home just before Easter and within a few weeks, he was walking! After he learned to walk, he learned to run, then jump. With intensive physical therapy he learned to ride a bike, and to climb! One miracle followed another until we just learned to expect them!

"And so now I can do this mom?" More dribbling.

"That's right Brady boy!" I replied as the tears fell onto a wrinkled Sunday dress on the ironing board.

"It sounds just like the story in the bible mom. Jesus healed the blind man and made it so that he can see! It is a bad thing not to be able to see. You can't see your birthday cake, or your presents, or even yourself!"

"That is bad. And yes, it is just like that! God healed your body so that you could walk, and run...and dribble!"

"Well, what would have happened if he didn't heal me?" my very logical boy asked.

Do I?

Don't I?

Is it time? Is it okay to talk "what ifs" with your 5 year old?

A peace that is indescribable came over me and I said, "Well, the cancer in your body would have kept growing."

"Would it have come out of my eyeballs? Gross!"

"No, but it would have grown so big that your body would not have been able to work."

"You mean, I would have died????????"

"I don't know sweetie. But what I DO know is that you are here right now. And you are healthy! God healed you! And you are a miracle!!!"

A few seconds passed. Wheels turned in that precious little head.

"Okay mom! Bye!"  And off he went. Up to the bathtub.

As the ball rolled across the floor toward me, I listened to his feet go effortlessly up the stairs.
I fell to my knees.

 Tears poured.

God was there.

Gratitude, love, and everything amazing overwhelmed me.

I spent a few minutes there on my basement floor. The contrast of my yucky, dirty basement floor and the beauty of what had happened was incredible.

God does his best work in the messiest places I think.

After the kids were tucked in bed, and before my husband and I settled down to watch the big game, I looked up the story of Jesus healing the blind man.

John 9:1-3
As he went along he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"

"Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him."

Jesus goes on to heal that blind man, which is the part of the story that was very familiar to me. But this other part, from verse 3, I had forgotten about.

"This happened so that the works of God might be displayed in him."

The works of God have been displayed. Miracles on display. Miracles not to be forgotten, but to be explained to our children through the years. Miracles that have happened not because we are more special than anyone else, but they happened so that God's handiwork could be evident to those around us.

This, this, this is what it is all about.

What a night.

Sunday, January 20, 2013

It's Been Four Years

      Tomorrow is the 4 year anniversary of Brady's Neuroblastoma diagnosis. There are so many dark memories of that day and those that followed. It's would be so easy to dwell on that aspect of things. And truthfully, there are moments when I do. But this January 21st, I am choosing to focus on the greatness of my God. He has seen us through those dark days of diagnosis, surgery, chemo, more surgery, and healing. And for reasons I hope to one day understand, he has restored our family and blessed us beyond measure.
       As the mom of a survivor, it is so hard to fully "accept" that my son is alive and well. Some call it survivor's guilt, I just recognize it as an intense awareness that for some, the fear that I carried for so long has become a reality. That some must walk the path of life after losing their precious child breaks my heart into a million pieces. But my trust in a Savior that promises that he works all things together for our good allows me to continue to mourn with those who have lost, while still praising God for Brady's healing. What a delicate balance that is.
    I sat here tonight and read through the notebooks I used during the time of Brady's illness. I had one where I kept medical notes, phone numbers, and questions I had for doctors. The other notebook is where I kept lists of cards that were sent to us, meals that were made, fundraisers that were held, and donations that were given. I am in awe, even four years later, at the amazingly generous people that God put in our life during that time. I have pages and pages of names of people who supported us. I read the cards again and just cried. We NEVER felt alone. Thank you if you were one of the hundreds who prayed, gave from your own family's money, took time to write a note or make a meal, or showed that you cared in some other way. Matt and I are forever challenged to give more generously and to step out and help those in need.
     I also came across some notes that I had written for the time I spoke at the Genesee Cancer Assistance Festival of Hope. One of the last things I said was, "I like to sit and think about years from now, when Matt and I watch Eli, Cara, and Brady graduate from high school. On that day I am sure that I will be reminded of his battle with cancer. But all of those years from now, I pray that I can look back on his journey and feel proud that my son was a warrior against cancer. It is my hope that God will continue to use Brady's life and story to inspire hope in others for many years to come."
      Yes, yes, yes! I still feel this way. Brady is just a 5 year old boy. But, his little life is a testimony! It is always my prayer that through his story we can point to Jesus. Our hope is in him, and we trust that he will continue to use Brady's life to bring people into a closer relationship with him! So today we celebrate how far God has brought us as a family.

Those who have read the blog for years will probably remember these pictures!

(warning: some images are graphic!)

The first time I held Brady in the ICU after his spinal surgery (Jan2009), the day he was taken off the ventilator.
 The ladies from Angels of Mercy praying over Brady at a benefit in his honor. I thought, and still do, that he was so handsome with a bald head!

                               Adjusting to life with a Broviac catheter for chemotherapy.

                           At Memorial Sloan Kettering (remember those bunny ears?)
                                                                just before his 2nd surgery.


                                       Recovering after 2nd surgery, while still recovering from the first!
Learning to walk, ride, and get stronger through months of physical therapy.
Committing as a family to help raise money for pediatric cancer research and to raise awareness!
These 4 blessings are the light of our life. They are as close as can be and Matt and I couldn't love them any more than we do! 

                                    I can't wait to see where the next four years will take us!
(photo courtesy of Kristen Hamm Photography)
Jeremiah 29:11
 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Wednesday, January 2, 2013

Depends on How You Slice It

Brady had his scan today to follow up on October's developments. As always, he handled the process like a brave boy. He walked down to the MRI room with a smile, allowed the anesthesia team to put the mask over his face, and fell asleep like a good boy. He was under for about 2 hours and awoke quite groggy, but rather contently. His first request was for a cookie, followed by his second and third requests...cookie and cookie, respectively. I emailed the doctor when we got home this afternoon and asked for results as soon as they were available. I wasn't sure if the oncologist would call us with only a preliminary report available today since last time the final report revealed that the spot had indeed changed. But alas, our doctor who always seems to be working, called me at 8pm. His words were that, "the report looks good. The spot looks the same, if not possibly a bit smaller. It literally could depend on how you slice it,or how the image is taken. I am taking this as a good omen for the new year." We meet with him next Thursday for our follow up appointment. He will go over the final report and hopefully make some sense out of all of this. This tumor, or "the spot" as we call it, is one strange mystery. It stays the same for years, then it strangely grows, now it is the same again, or perhaps smaller. What will it do next???!? Matt and I are sure that the power of prayer is at work in Brady's life. What we can't make sense of is just as it should be in the eyes of God. There is so much peace in knowing and trusting in that. Thank you if you are someone who lifts Brady up in your prayers. Thank you if you are someone who offers kind words of encouragement to us. Knowing that we have so many who continue to support Brady is such a blessing. />