More Blessings to Share

We have made a little bit more progress in putting together a plan for Brady's spine. Our pediatrician helped us out and called to speak with the orthopedic doctor that we will be seeing in March. He reviewed Brady's XRAYs before talking with her, and his impressions were that the curve may not be as progressed as the doctor we saw originally thought. As frustrating as this may sound, it really isn't all that significant given that both doctors agree that it will very likely get worse. I guess there is a lot of room for interpretation when reading the XRAYs. I don't get it, but I'll take his word for it. The new doctor also said that he is very glad we made the appointment to come and see him in March rather than wait until July as was originally suggested. He wants to redo XRAYs and discuss options with us then.

In the meantime Matt and I are continuing to reach out to doctors, some even outside of the United States, and try and see what the options are. I won't bore you with specifics, the gist of it is that there isn't a tried and true method for treating a spinal deformity like Brady's. So, we have to figure out the option that shows the most promise...and then we'll step up the prayers!

Tonight I wanted to share another email I received from someone I've never met. She is a fellow triplet mom who belongs to the same online community of Triplet Moms that I do. Her name is Kim and this is what she wrote:

I found out about Brady quite by accident. I did not know about the struggles he was experiencing with walking and I did not know about the CP diagnosis and the concern that your family had over it. I just happened to check the triplet connection that day and saw a post by you. I cant remember exactly what it said but it directed me to Brady's blog. So I went. Brady had just been diagnosed with cancer. From that day forward, I think I checked the blog at least once a day especially when he was undergoing treatments and surgery. Then I can honestly say I checked the blog several times a day.

Brady Boy's journey has changed the way I look at God. Before there was no possibility of God for me. I would not say that I am religious, but I am leaning more toward believing now, than not. At one point, I prayed to God, telling him that if he cured Brady of cancer, I would give God a chance. Well, I know that he's not really considered "cured" until 5 years pass but he doesn't have cancer now and that is good enough for me.

Brady's journey has also helped me to appreciate my kids more during the rough days that we sometimes encounter. I try to step back and tell myself that many people would give anything to be dealing with a frustrating toddler because that would mean their child was still here. I realize that my kids may not always be here. Anything can happen at any time.

I have fully embraced Brady over the past year. I feel a connection to this little boy and I have never met him. He is special to me. I cant put my finger on why. Of course he is brave and all that but he really didn't have a choice. And still every day I check the blog to see what is going on with the family.

Brady you are such a hero and you have touched so many lives!

Thanks Kim for your prayers and your friendship!

Click below to see where we were one year ago

http://stepsforbrady.blogspot.com/2009/01/hope.html

The Day That Was

Well my friends, the day has come and gone. I thought a lot about things today, lots of reflecting, a lot of "where were we this time last year", but in the end it was just another day! Hearing from so many of you in the past few weeks has given me a great perspective heading into today. Matt called me from work today and told me that he just felt grateful. I second that!!!

One of the biggest blessings in the past year has definitely been the countless ways our friends and family have supported us. Do you remember that we had dinner delivered to our home 4 nights a week for 4 months! We do, it was a tremendous blessing to our family. Do you remember the fundraisers that were put together that helped us to pay our bills and pay for expenses when Matt was missing so much work? We do! I'm so grateful for the hundreds of cards of support we received for months...sometimes reading them was the only joy in my day. There were friends that came from hundreds of miles away to help out. Perfect strangers sent us care packages to help bring a smile to all of the kids. I tried to keep up with thank you cards throughout the whole process...writing 10-15 a day at times. I hope I didn't forget anyone, but am sure that I did.

So...to all of you that did something to help our family during the worst of times...

THANK YOU FROM THE BOTTOM OF OUR HEARTS!!!

I'm going to keep sharing some of the emails I've received for the January 21st project. My goal is to get a digital scrapbook made in the next month or so, and of course I'll share it with you all when it is done.

Here is a great email I received from someone I've never met, but she touched my heart just the same...

My step-sister e-mailed me and asked me to log onto this blog and pray for some kid named Brady. Yeah - right - I have enough to deal with in my life without adding praying to it. For some unknown reason - I did log on and started to read...and pray (for the first time in a very long time). I started to log on to the blog every morning before I started work and felt as though I was a part of everything that was happening. I would find myself praying while driving, asking God to watch over your family and to help you accept whatever He deemed was necessary. I have a husband who has Alzheimer's, I work two jobs and I have more stress in my life than I would like, but because of Brady and your blog, I am learning to let go and let God. If I have a bad day, I log on and scroll through and read of your courage and belief and know I can keep going. Thank you for sharing your pain and joys, and your incredible belief.
Sincerely,
Kathy V.
Albany, NY


Thanks again Kathy for your email and for your prayers even though you are dealing with so much in your own life. I'm so glad that Brady's story gave you a chance to pray...

The Project

My plan for January 21st was to cut and paste a few stories that people sent to me and somehow shed light upon the good that has come from all of this. Never did I think I'd be so humbled by what I'd receive from friends, family, and perfect strangers.

This whole Steps for Brady has been going on for a year. It all started because I needed to write, to think out loud, to record, to remember, and to reach out for prayers. In return our family has been supported by the comments of faithful readers, encouraged during hard times, and now through this project we have been shown that this whole experience is so much more meaningful than a blog about Brady. The true impact of the past year extends beyond our family and into the hearts of those who have prayed. It is a God-thing...for sure.

I've received somewhere around 25 emails. It's been a busy few days and I've spent a lot of my free time returning emails and of course working on getting answers to Brady's spine issues. I want to share some of what I've received, but am realizing that to share all of it here would be too much. I can't wait to put all of the messages into a keepsake book for our family. And over the next few days I'm going to include bits and pieces of the wonderful messages we've received. I really admire all of you who courageously wrote to us in very personal and honest ways. I'm praying that the stories I'll be sharing

will now touch the lives of someone else who reads them. Isn't it amazing the way God keeps the blessings going on and on and on and on.....

To start off the Jan21st project, I want to share some words written to me by a very good friend of mine. She herself is a cancer survivor, and what she wrote is different than anything I've ever considered when thinking about cancer. After I read this, Matt and I literally sat speechless and overwhelmed with emotion. Amazing stuff...

You can’t experience cancer and not be changed.

You may change physically, sometimes emotionally, and frequently, spiritually.

Sometimes it’s not a good change but I believe, more often, it is very good.

How can you not appreciate the little things when you’ve faced your greatest fear?

How can you not feel more compassionate and caring and concerned when others are suffering? How can you not be overwhelmed by the goodness of people?

How can you bemoan the experience when it provided the chance to see the face of God?
If you have been touched by cancer, you have been given the opportunity to truly know what it means to live and be alive.

If you have not been touched, can you really feel the magnitude of LIFE?
Make a list. Write down all the positives and all the negatives of the experience.

I have a feeling I know which side will fill the fastest….

Now, do you really wish this never happened to you?

See? I told you...remarkable words for sure. The only thing that complicated this for me was the reality that it is Brady who had cancer, not me. It is Brady who has to deal with the long term complications. But...and here is my big revelation for the day...my prayer is that Brady will get to a point in his life and be able to read this and say, "Yes God, I get it, I understand. This trial in my life has been for Your glory!"

That is what the January 21st project is all about...stay tuned!

Well, the week is here. Honestly it seems like eons ago when Brady was diagnosed with cancer. I guess it is because we have lived an awful lot of life since then. This week has kind of been this dark spot on my calendar...I know it has been coming, but have just wanted to avoid it. You might think, what is the big deal? It's just another day? Why the drama lady?

For me I think a lot of the difficult emotions from that day and the ones that followed are brought to the surface at certain times. When I go to Strong Hospital for Brady's scans every three months, when I walk by "the room" where we were told the word cancer, when I sit in the same rocking chair in the MRI recovery area as I held him in for hours as we waited to find out what we would face next...there are just painful emotions attached to those places. I guess the same is true for the upcoming week on the calendar. Those emotions are just attached to January 21st and beyond.

That is why I came up with the idea for the January 21st project. I wanted to somehow dispel some of those feelings and replace them with something positive. By sharing the many ways in which Brady's story has touched others, I am hopefully that our family will try and remember the good that has come out of this terrible experience. With just 4 days to go, I hope that if you still want to contribute your thoughts, you will email me at mwilliams91@rochester.rr.com. Some have told me how they heard about Brady and why they felt led to pray for him. Others have shared that praying for Brady has renewed their relationship with God. It has been wonderful to "meet" people whom I didn't even know where reading. I feel like we have a bunch of new friends out there who are on our team cheering for Brady right along with us!

I'm really looking forward to sharing all of the uplifting stories that have been sent to us. I'm praying that they bless your heart as much as they have mine.

Explanation of Brady's Spine

Oh bloggy friends! You sure know how to pick me up when I am down. Thank you for all of your kind words, encouragement, perspective, promises to pray, and emails. We obviously aren't alone in our disappointment, but greater than that, we aren't alone in our hope and trust that God still reigns and will see us through.

Today was a down day for me. I woke up and the stress and sadness hit me like a ton of bricks, along with a killer headache. I was glad to have Grandma Sandy here to help keep us all going:) Our home improvement trend continued today with a very necessary repair. We had our sewer and water lines from the house to the street replaced. This involved heavy machinery, a 10-12 foot massive hole in our front yard, a lovely dirt and snow mound, and several burly men (1 with a cigar) in the yard. The kids were almost as excited about all of this as they were on Christmas. Hopefully our plumbing problems are a thing of the past. Can't wait to see the yard in the spring!

One reader asked me to explain how Brady's surgery has caused the spinal deformity which is a very good, and often asked question. I tried to have Matt (Mr. Very-Wise-in-Regards-to-Human-Anatomy) explain it to me (Mrs. Very-Clueless-As-I-Barely-Passed-All-Science-Classes). Needless to say, I have turned to Google to share what I've learned:

Here is a diagram of the thoracic spine. Brady's surgery on Jan21st, 2009 was on T2-T7. The tumor started in his right chest wall and had grown into his spinal column. It was intertwining itself around his spinal cord and compressing it almost completely.


The surgery that was performed was called a laminectomy. The surgeon made an incision directly over the spine, and entered the spinal column by removing the lamina from each of the vertebrae from T2-T7. This is not a terribly uncommon surgery for adults with spine problems, but usually one or two levels are removed, not 5. Here is a diagram of the lamina. I think of lamina as the walls around the spine that keep it straight and supported as it grows.

So, with five of these "supports" missing from Brady's spine, as it grows, it is bending and curving without a structure to keep it straight. Here is a picture of a kyphotic spine. Brady's "hump" is more on the right side, the side where his surgery was performed.

That is my version of Brady's spinal issues. He is also at risk for a significant scoliosis, but so far, that curve is not as severe. Matt and I are diving into research and scouring the internet for information. It won't surprise you that we aren't just accepting the "there is nothing we can do" response. This may turn out to be true, but with a ton of prayer, lots of reading, and consulting as many other professionals as we can, we are trusting that God will lead us to an answer if there is one out there!

There is just one week to go until Brady's 1 year anniversary. I didn't realize this when I started it, but the January 21st project has given me so much encouragement, beyond what I thought I needed. Imagine how all of the amazing stories, testimonies, and pictures will help Brady stay strong and never to give up hope when he reads them some day!

Time to Tackle Another Issue

First I need to say "Sorry" as I realize that this blog has been lacking pictures lately. I don't know, I guess once the family left town and the Christmas tree came down, I forgot to keep up with taking pictures:( I will get the camera out this week...promise!

Tomorrow is Cara's 3 month post-op appointment with the eye specialist. If you remember she had eye surgery in October to hopefully correct the head tilting she had been doing since about 1 year of age. We were very pleased to see a big improvement right after the surgery and in the month of November. Unfortunately, the head titling has slowly become prominent again. The fact that we saw am improvement right way confirms that this is not just a bad habit. There is something wrong with her vision that leads her to tilt and turn her head when looking into the distance. She only wants to use her right eye.

So tomorrow we go back to the eye doctor to discuss this. Ughh...I really hate the whole "mystery diagnosis" game. I'm praying that he has an explanation for this and a plan to make it better. I do remember him telling me that sometimes the surgery needs to be repeated. Double ughh...Please join us in praying for a resolution to this problem. These are her only eyes for the rest of her life and I really want to get to the bottom of this in the least invasive way possible.

The highlight of the day will be after her appointment. We will be doing "girly things" as Cara calls them. We are going to the mall for a bit and out to lunch. She's so excited, little does she know that I'm even more excited! I LOVE giving her all the one on one attention she deserves and that is hard to come by around here!

Remember...we would love to hear from you as we approach Brady's 1 year cancer anniversary. Click here to read about the January 21st project.

Amazing Stuff

So the January 21st project is off to a great start! I have only received a few emails, but the stories I've been reading have been are nothing short of amazing. If you ever doubted God's ability to turn life's tragedies into good, you won't after reading some of these messages. I'm so happy that Brady will be able to see how God used his life to reach out to others, people we may never meet face to face, and touch their hearts. Truly amazing stuff! There is still a week and a half left until Jan21st, so please consider emailing me at mwilliams91@rochester.rr.com and being a part of the project.

Of course I would love to hear from many, many more! I guess I always thought people were reading that we didn't know, but I'm so happy to know that those people are still reading and have really come to care about our family. We feel so blessed to be able to share the story of how cancer has affected our family with others. My biggest goal through blogging is to show God's love and share our testimony with others.

Another cold weekend has gone by in western NY. Now we settle in and wait for spring. I don't mind winter as much as others. I'm not a fan of the hot and humid days of summer, so snuggling up for a few cold months doesn't bother me at all.

Now if I can just figure out how to keep 4 kids entertained inside the house all day!!??!?

Mommy's Day Out

Ahhh...a day all to myself. I felt a little couped up after this week as I only left the house for Brady's appointment, an endoscopy, and a trip to the grocery store. Two wonderful friends of mine each called me and I got to spend the morning with one friend and an afternoon with another. Shopping, lunch, more shopping, and afternoon tea, what could be better?

Sweet, wonderful, kind and loving Matt was home with the cherubs all day. If I keep up all of this sweet talking I'm hoping I can do this again sometime:) He does this without complaint, and has nothing but great things to say when I get home. I'm blessed.

The delightful hugs and kisses I got when I came home where just as wonderful as the time away!

Now to enjoy the rest of the weekend...
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I would love to hear from you in regards to the January 21st project. I'm trying to compile thoughts, feelings, and stories from those who have supported Brady through this journey. I've heard from a few, but would love to hear from many more:)

Vaseline Boy!

Oh Eli! I have to write this all down so that someday I can tell you how silly and quirky you were as a toddler. It all started last night...

Grandpa was here for a visit and was in the nursery as we got everyone settled down for bed. I had put some lotion on Brady's cheeks because his skin is so dry. He put up a huge fuss about it, so Grandpa was pretending to put lotion on his face and then onto some of Brady and Eli's stuffed animals in their cribs. I guess this idea peaked Eli's imagination. That coupled with the fact that we had fingerpainted earlier in the day led to Eli deciding that he should grab a container of Vaseline off of the nearby changing table and bring it into his crib after we left the room at bedtime.

Somewhere between the hours of 8pm and 11:30pm, Eli did just that. He got the Vaseline, opened it, and proceeded to spread it all over, everywhere. It was all over his face, his hair, his Snuffleupagus, his Elmo, his stuffed dog, little Snuffy, mickey mouse, his sheets, his blankets, his pillow, and about 8 rungs of his crib. I had just dug that dumb container of Vaseline out of the medicine cabinet last week to protect their cheeks when we went sledding. I left it in there to put on their chapped lips. Little did I know...

We decided to let him just sleep and we would clean it up in the morning. And what a mess it was to clean up. Vaseline just doesn't wipe off and it completely stained his sheet. He thinks the whole thing is very funny. I keep calling him Vaseline Boy and he does this stinker face and laughs.

Another funny thing about Eli these days are his out-of-the-blue revelations about the world around him. A few weeks ago, and now every few days since, he just said in the most astonished voice, "Allie can't talk! She can't!" What a funny boy.

We are hunkering down in the cold and snow for a pretty quiet weekend.

If you didn't read about the January 21st project, you can click here to find out how you can participate. I'm really excited to hear from more of you and to share your stories on the blog. I'm sure others will enjoy reading others' thoughts for a change! Please keep your emails mwilliams91@rochester.rr.com and comments coming! Any insights or relections as to how Brady's story impacted you are most welcome! I'm also hoping to have some pictures of those who prayed for Brady or helped our famil in some way. The book will become a treasure for our family for sure:)

The January 21st Project

I've got this idea...

Two weeks from today is the one-year anniversary of Brady's diagnosis and his first surgery. January 21st sticks out in my mind like a huge sore thumb this year and probably will for the rest of my life.

After all, it was a bad day.

As this day has been approaching on the calendar, I've been thinking of a meaningful way to mark the day as to hopefully displace some of our bad memories.

So, I starting thinking of ideas. I'm a girl who likes to come up with big ideas. About 90% of them don't ever amount to anything...but I keep dreaming them up anyway. Like the time I thought, "I think we should have this big, huge party this summer to celebrate the end of Brady's treatment. We'll call it the BRADY BASH!" And then the time I had this idea to sell lemonade... Okay so those were the good ideas, but trust me people I've had plenty of silly ones that were downright impossible!

Back to my point. How do we mark this tough day in our family's history?

I came up with the idea called the January 21st.

I've been thinking a lot lately about little man Brady and how someday I will have to tell him all about this time in his life. He’ll have questions about the scars on his body and I will be answering them the best I can. Of course I’ll have the blog to refer to, the pictures, and even the cards that were sent.

But I want him to know more.

I want Brady, Eli, Cara, and Allie to understand that through Brady’s illness, people’s lives were touched. I want them to understand that God took this terrible situation and used it for His purpose. At a time in their lives when they may not yet understand the ripple effect that God’s love can have, I want them to learn that the story of a little boy with cancer truly impacted those who prayed for him and supported his family.

This is where you come in!

My idea is to put together a scrapbook with pictures and thoughts from those who have followed Brady’s story. On January 21 I would love to share some of them on the blog as way to commemorate Brady’s cancer anniversary, but also as a way to keep the testimony of his story alive.

If you are willing, I would love to have anyone who has been impacted by Brady to email me and share how his story impacted you.

Maybe you are someone who has prayed for Brady. I would love to have pictures of those who have prayed for him, maybe even a picture of our prayer warriors holding up a sign with his name, or saying “We pray for Brady!”

There may be some of you out there who have donated to a specific charity, reached out to volunteer, or just changed the way you view life’s ups and downs. Whatever your thoughts, no matter how small they may seem, would be a wonderful contribution to this project.

We have around 250 readers a day and I’m hoping to hear from many of you! I pray that gathering all of these stories will bless our blog readers, provide further healing for our family, and be an amazing testimony of God’s never-ending love for all of us.

Thank you for your help with this project.

Please email me directly at mwilliams91@rochester.rr.com or leave a comment on the blog. If you do not want your story or picture shared publicly, please let me know.