Thursday, April 30, 2009

First PT Appointment and Blog Contest!!!!

After a little bit of chaos this morning, Brady and I arrived in Henrietta for his first PT appointment at exactly 8:30am. At the last minute before leaving I remembered that Dr. L had given me a letter saying Brady was cleared for PT. Long story short, I couldn't find the letter and it took me 15 minutes to not find it. Then I forgot my gas tank was empty! After a quick stop for gas we were on our way. We actually went to an Al Sigl Center that houses center based programs for children with disabilities. We met with Linda a wonderful and kind PT who worked with us for close to 2 hours. She didn't know much about Brady other than he was suspected of having CP at one point, that we later found out it was cancer, and that he had two surgeries. I think she was quite surprised to see our hero Brady crawling, standing (he didn't attempt walking), and cruising around like a champ! I have to say that it has been a while since I have told "our story" to someone from the beginning. Doing so caused me to really reflect on the scope of the past three months while driving home. As I looked in the rear view mirror at his sweet, sleeping face, I couldn't help but tear up as I thought about what my child has endured. All the pain, scary moments, new faces...yet he still trusts me, he still loves to explore his world, he still giggles. God is so good to have protected his innocence despite all that has happened.

Anyway, back to PT. It looks like he will have two sessions a week for 30 minutes each. She wasn't even sure he would qualify given how well he is doing, but after scoring the test, he will qualify. I'm glad to have a specific time set aside to focus on catching Brady up! He deserves that one on one time.

On a lighter note, I have made it to the top ten in the Mother of All Bloggers Contest!!! The top ten was chosen by a panel of judges. The next part of the contest is from now until May 6th. The winner will be chosen by people who go to the website and VOTE!!! I don't believe that you need to be a member of momlogic to vote. You can either:
1. Go to the Mother of All Bloggers icon to the right, click on it, and then find the Steps for Brady logo and vote.
2. Or go to and vote that way!

Please pass this info on to anyone that you think would be willing to vote! I'm so excited to think of all who will be reading about Brady and learning about NB! Thanks for all of your help in getting me this far in the contest!

Wednesday, April 29, 2009

Step by Step

Brady did a little more walkin' today!! He certainly picks and chooses when he will do it. He will ONLY walk on the carpeted play room which makes things tricky because that is the only carpet in our house! I think the soft surface gives him a little more stability and some cushion when he falls.

I'm so glad so many of you enjoyed the video yesterday. Matt worked really hard to get it online. I'm trying to get the kids on tape singing so be watching for that in the next few days.

Tomorrow Brady and I will leave at 7:30 for PT. I'm praying for him to build a good relationship with the PT. We are praying every day that the scans (hopefully in the next few weeks) will show no new disease. We are praying that soon Brady can have surgery to take out his Broviac. I changed his dressing tonight and he was in pain. His skin is getting very sensitive and washing the area burns. He was itching at the site a lot afterwards and it was bothering him so much. We can't wait to have it out so Brady can enjoy everything this summer!!!

Keep the prayers coming for our hero Brady!!

Tuesday, April 28, 2009

Brady Walkin'

Matt is uploading a video as we speak of Brady taking some steps today! Two different times today he got in the mood to walk! He was having a great time walking back and forth between grandma and I this afternoon. Later tonight he walked to grandpa and Matt got in on tape! The cutest is that Brady kept saying "Brady walkin!"

Brady has his PT evaluation scheduled for Thursday at 8:30. We are going to CP of Rochester which has a pediatric outpatient clinic for physical therapy. I don't know too much more about the facility, but it has been highly recommended to us. Please be praying that Brady will get over his fear of new people and feel comfortable during this appointment. I think we will be going two times a week. It is about 50 minutes each way, so this is a big committment. I'm really excited to see Brady soar!!!

Check back later for the great video!

Sorry about the delay - long story, big headache.


Monday, April 27, 2009

Catching Up Monday

Isn't this weather crazy? Those that know me know that I totally don't enjoy the heat, so I'm not all that excited about our little heat wave. We did spend some time outside after dinner tonight and it was quite lovely because it had cooled off a little! You have to love Western New York!

I called Sloan today to see if more test results had come back. I'm not sure who called me back, but whoever it was was kind of short with me. She told me that they had given us the results last week when we were there. Yes, we did get some results (sizes of what was removed and the make up of the tumor), however, I explained to her that we were anxiously awaiting news of the histology results. Like I explained before, more than likely the tests will show the same results that were done in January, placing Brady in the intermediate risk category. However, we have heard that in rare cases testing of large portions of the tumor reveal that in fact the disease is high risk. She told me that Brady's case will most likely be discussed at the Tumor Board tomorrow and that someone will call me, although she doesn't think the results will be back by tomorrow. Ughh...

I also touched based with Strong to see when we can get the MRI and CAT scans scheduled. Our fabulous NP Laurie who works with our Dr. Asselin, our oncologist, will be calling me back regarding scheduling the tests.

Here's a cute story about our hero Brady: While we are outside tonight, Matt showed the kids the new sand box! They each kind of stood around the outside playing with the sand. He finally told them that it was okay to get in the sand box. Our Brady climbed right in and started digging around! Cara got in after about 15 minutes, and poor Eli, he never got in even after 30 minutes! As cautious as Brady is with people, he really is more of a risk taker than Eli and Cara. I love to see him enjoying life and doing new things! Go Brady...

Sunday, April 26, 2009

Back to Work

We had a busy day!!! The whole gang made it to church this morning and then grandma took Eli, Cara, and Allie home. Matt, Brady, and I drove to Webster for the Angels of Mercy Spaghetti Dinner. It was a great time and we are so thankful to this organization for donating a portion of their proceeds to benefit Brady. Thank you to all of our friends and family who came to the event as well! Brady had a great time eating spaghetti and cake:)

Here are two pictures from the benefit today. The "angels" at Angels of Mercy prayed over Brady:

Tomorrow it is back to business around here. I have several calls to make regarding some insurance issues and I need to touch base with the PT clinic to set up Brady's eval. Most importantly I need to call Sloan to see if the rest of the tests are back from Brady's surgery. We are continually praying that the results of the biology studies will still place Brady in the intermediate risk category. I also have to call Strong to set up a schedule for Brady's scans.

Since we have been home it is so easy to forget about the cancer world. Yes we have the daily care of Brady's Broviac and the constant reminders when looking at his scars. But we are home, no appointments for a while, and I guess I should feel really content. I just don't. I am struggling with this whole "monster under the bed" feeling that at any moment it will come crawling out and attack us once again. The parents who are in the monitoring phase call it "scanxiety"...all of the anxiety and fear that is wrapped up in the scanning and waiting phase. So I'm looking to God's word for strength and wisdom as we enter this next phase. I'm praying for courage and the ability to cherish each day despite the uncertain future. Thanks for letting me vent:)

Saturday, April 25, 2009

More Birthday Memories

We woke us this morning to the many reminders that we had a great party here last night. Cards and gifts were strewn all over the house! The kids had a great time exploring their new toys and eating leftover cake and cupcakes! Tomorrow is another busy then off to Webster for the Angels of Mercy Spaghetti Dinner.

Some great Brady news: Today he stood up completely on his own. Up until now he pulls himself to stand using a table or something close by, then will let go and stand for a while. He wanted to use his new T ball set, so Matt told him he had to stand to play T ball. So he just pushed up from the ground, planted one foot, then the other, and stood there! He can even bend to pick up the bat and ball without holding on to anything! He is learning to take a swing with his bat! Way to go Brady:)

Here are a few more pictures:

Our fabulous cakes dropped off by a neighbor that were a total surprise:) Thanks Kim!

Allison is sitting up all on her own now!

I love this one! Cara is admiring her painted toe nails while sitting in the afternoon sun.

Silly Brady with his sunglasses on!

Eli and his new Snuffleupagus!

Friday, April 24, 2009

Happy Birthday!

I just love living in our small town! In the past week alone I've had a dear neighbor drop off bread fresh from the oven, the local florist help me fill up one last birthday balloon with helium and refuse to take any payment, and a fellow triplet mom drop off three surprise amazing birthday cakes that she made for my kids! We are so blessed by the support of our community:)

The kids had a wonderful birthday!!! What a joy to see the three of them together celebrating two years!!! They looked adorable in the outfits my mom had embroidered with their names. They received some wonderful gifts and loved the Sesame Street decorations:) We even got to spend an hour or so playing outside with everyone after dessert!

I spent many moments today just thanking God for these wonderful memories! How richly we have been blessed by our 4 wonderful children!!! I continue to stand in awe of the miracles God has done in our lives to allow us to all be together on this day...

Here are a few pictures from the party:

Eli, Mommy, and his new trike!

Cara in her party dress

Brady STANDING up next to his new T ball set

Thursday, April 23, 2009

Turning 2

Just after midnight tonight, my babies turn 2! I'm sad, I'm happy, I'm scared, I'm relieved. AAAHHH!!!

We are having a small party tomorrow night and just trying to soak up all the fun that having three toddlers brings!

For those among you who are sentimental...

This is me, 2 years and 1 week ago at 33 weeks pregnant with triplets...

This is the first picture of me holding all three babies while they were in the NICU about a week after they were born...

One year ago at their first birthday party...

And a picture from today...looking out the window at the world!

I wanted to add this picture I took of Brady's back tonight. The darker scar running down his spine is from his January surgery. On the right side you can see his incision from his recent surgery. The other marks are scars from various drainage tubes. His chest tube scar isn't visible in the picture, it is under his right arm. I have to say that tonight was the first good look that I got of his back since this last surgery. I gasped and just teared up at the sight of my poor baby. This is just another reminder of how amazingly brave Brady is!

I will be sure to share some pictures of the birthday party tomorrow!!!

Wednesday, April 22, 2009

There and Home Again in 25 hours

Home again.

The trip went off quite well! We made it to where we needed to be on each leg of the trip on time and all 3 of us survived the day! First off, I know you are wondering how "flying corporate" was. I tell ya, it's the only way to fly:) Think...driving up to a small scenic airport, waiting in a nice room with fresh coffee, walking out as the sun rises and boarding a clean spacious plane that seats about 20, large leather seats with at least 3 times the leg room, and a smooth 45 minute flight. No check in, no taking your shoes off and being herded through metal detectors, no delays! It was just fabulous and we are incredibly grateful to the kind people from Corporate Angels for arranging the flight and for the Corning Jet that donated the seats.

We were taken by a "air bus" from Morristown NJ to Manhattan. We grabbed a cab from the drop off point at Madison and 59th to Sloan. We only had to wait a few minutes before meeting with Dr. Laquaglia. Here is a summary from that meeting:
1. Brady's dressings were taken off. His incisions look swollen, but good.
2. All test results aren't back yet, but what has come back shows that what was taken out of the chest was a neuroblastoma/ganglioneuroma mass (translation= both active and mature cells). What was taken out of the spine was tested and was gangliorneuroma (that is good news!)
3. He recommends following a wait and see approach from here on out. This will involve MRIs, blood, urine tests at 3 month intervals. He asked if we wanted to do scans at Sloan or back at Strong. We are thinking of doing them at Strong unless something unusual shows up on them, at which point we will certainly opt for a 2nd opinion at Sloan.

Our conclusion about our Sloan experience is this: We are glad we went there for Brady's surgery. From the research we have read and parents we have talked to, Dr. L is undeniable the best for this type of surgery. However, we are not sold on Sloan doctors to be Brady's oncologists. We fully respect their clinical trials, their cutting edge approach, and their vast experience treating NB. Our issue is that not one doctor took the time to read about Brady before stepping into the room with us. Each doctor gave us opinions based on 2-3 minute question/answer period at the beginning of our appointments. Often times the doctors were flipping through Brady's info on the computer while we were talking. Yes they are busy, but for us the "little fish in a big pond" feeling made us both somewhat uneasy. We are coming to the conclusion that it may be best to have Brady seen at Strong, and use Sloan as a consult if Brady has an unusual scan or relapse.

Since we had come all the way to NYC, we asked to have a brief meeting with someone from the oncology group. We were told we would just meet with a "fellow" since everyone in NB was busy. Imagine our surprise when we walked into the room and Dr. Cheung was standing there. He is the head of the NB department at Sloan and his name is associated with countless studies of NB! He did a brief "background" discussion with us as he hadn't looked through Brady's file. His outlook was much more cautious than Dr. L's. I heard the words "hopefully" "most of the time" and "should" many times in our discussion. Here is a summary:
1. Most of the time in cases like Brady's, surgery is an effective means to stop the cancer from spreading.
2. Hopefully Brady will not have any "late effects" from the chemo he received. Remember, Sloan advised us not to do chemo about 15 hours before we were due to start it at Strong. Examples of late effects are higher risk of another type of cancer and sterility.
3. Brady's tumor involved his spine and Dr. Cheung felt that in cases like this, he needs to be watched more closely b/c of potential neurologic damage if the tumor in his spine grows again.
4. The most shocking thing he told us was this: Apparently, chemotherapy in cases like Brady's can actually cause the tumor to become more aggressive! We were shocked by this as NO ONE told us this piece of info. Quite the contrary we were told that often times Stage III tumors don't shrink with chemo, but the chemistry of the tumor changes. They become more mature (ganglioneuroma), therefore less dangerous.
5. He agrees with the suggestion of Dr. L to follow up with scans every 3 months.

So, a lot of info to digest from today. If you are still reading, thanks for hanging in there! I really like to write about all the details while they are fresh in my mind. I need to have it recorded in my own words and this blog is a great place to do it (but I know the medical stuff is a bit tedious to read!)

Brady was a great sport throughout this whole day. Imagine our little boy hanging in there for; 4 hours in the car, 2 hours on a bus, 2 hours on jets, 3 cab rides, and 2 doctors appointments! All in one day on not a lot of sleep. We did get to walk around Macy's after our appointments, but our Brady boy slept the whole time:) Glad to be home, let the birthday party planning begin!

Tuesday, April 21, 2009

Our Sloan Adventure...Take 2

I thought I would post this afternoon during naps since we are leaving when Matt gets home from work. Hopefully we will be on the road to Elmira by 8pm. We are staying at a hotel about 10 miles from the airport. Thanks to our friends Karen and Keith who graciously arranged a hotel room for us on them! We have to be at the airport at 6:30am to make our 7am corporate flight. We will be meeting with Dr. L sometime during the day to check Brady's surgical site and chest tube site. Both look great to me, the dressing on the chest tube incision just started coming off. We are hoping to ask more questions of Dr. L as to what his suggestion would be for future scans and possibly find out results of the histology tests on the tumor that was removed. Dr. L is a surgeon, not oncologist, so we are going to take his opinion then discuss our game plan with our oncologist here at Strong. We are praying that we can get scans scheduled in May and that they will show either no remaining cancer, or that the remaining tumor is stable. Then Brady will be able to have his Broviac out! My heart leaps at the thought... Matt and I talk daily about how freeing that day will be for all of us. Certainly a huge Brady Bash is in the works for this summer...all will be invited:)

I wanted to share some GREAT news with all of you. Most of you know that my mom has survived Non-Hodgkins Lymphoma two times in the last 6 years. She battled it a second time while I was pregnant with the triplets. She had to have a life saving stem cell transplant and the odds were against her that it would work. It was quite a dramatic time in our lives as I was on bedrest on the 3rd floor at Strong and she was in an isolated transplant unit on the 8th floor fighting for her life. Her goal was to be out of the hospital by the time I had my babies. My goal was to stay pregnant long enough for her to achieve her goal. God's gracious hand was at work in both our lives...she was discharged to go home on a Sunday, I had my babies that Tuesday, and my mom was right there! Fast forward two just had a check up with her oncologist. She has made it to the two year, post-transplant milestone which means she is officially in REMISSION! I'm just elated for her and can't wait to celebrate that milestone with Brady! We won't be able to say we beat this cancer for 5 years, but I'm praying every day to see a picture of Brady and his grandma on his 5 year, cancer-free anniversary!!!

You won't hear from me until tomorrow night as I won't be at a computer until we get home. I'm sure it will be an adventure and I'll have some good stories to tell! Please be praying for a smooth, safe trip!

Monday, April 20, 2009

My Mom Logic

So, we all know I have entered a blog contest sponsored by the site Mom Logic. Many of you were kind enough to nominate me, so my next job is to blog about my concept of what "mom logic" is. Quite honestly, I think I'm in over my head here. There is a whole world of blogging moms I never knew existed. Their blogs are incredible, their computer skills awe inspiring, and many have elements on their blog that I don't even understand. I guess I'm totally clueless, but the good news is, I do have a blog, so I have a chance:) Without further ado, here is my Mom Logic entry:

I think I gave up on the idea of motherhood being logical a while back. You see, life was following a pretty logical, predictable course for me. I fell in love, married my high school sweetheart, bought a house, started a career, and a few years later got pregnant.

That is the end of my logical story...

34 weeks and 3 babies later I found myself in the most chaotic state of motherhood that I could ever have imagined. This certainly wasn't my "white picket fence" version of what my life should be. Visions of quiet moments blissfully snuggling my baby to sleep, proudly taking my baby out to the grocery store with me, and happily recording every little memory down in a baby book were quickly replaced with the reality of raising triplets. Life became a routine blur through which I moved like a automated robot. If it weren't for several cups of coffee a day and the support of my husband and family, surely I would never have survived.

But I did.

We began to get into a groove around here. Three babies, it's not that bad. The unpredictable newborns turned into delightful babies who gave my husband and I days full of exhausting, yet wonderful adventure. We were approaching their first birthday and felt like we had conquered the world and I began thinking about maybe going back to work. Yeah that's it, I'll go back to work. Seems the logical thing to do...

Then I got pregnant.

You've heard the stories about the surprise baby that many couples who at one point struggled with infertility have later in life? Well, the stories are true! I found myself at a most-illogical point in motherhood. I had 4 babies in 18 months. I'll spare you the details of my terrible pregnancy nausea and the adventures of caring for 3 babies while carrying your 4th. I can tell you that this part of the story ends with an amazingly delicious 9lb baby girl who is the delight of our lives. All was well with the Williams family again until the most illogical thing of all happened.

My son was diagnosed with cancer.

I still can't wrap my head around this one. How can 21 month old boy who is perfect in every way have cancer? My logic failed me once again as I looked at my life and just couldn't imagine stacking one more stressor onto the pile our family was carrying. We are now 3 months from Brady's diagnosis, and guess what? We are all still here. I wish I could tell you that I have finally been able to make sense of all of what has happened since I've become a mother. Certainly I have no way of explaining the "whys" of my life, but I have come to a full understanding of the "hows."

So many people tell me, "God won't give you more than you can handle." My answer now is without a doubt, He has. I can't handle the pain of facing my own child's mortality. I can't handle letting him go into the operating room not knowing if he will come back to me. I can't handle being separated from my other three children as we take our sick son to another city to seek treatment. I can't, but with God, I can.

Logic, no...

With faith....YES!

For me the only sense I can make of my life is that God has a plan for me, for my family, for my children. He has promised not to leave me, that I'll never walk alone. Will my life be without pain, of course not. Is God using every happening in my life to His glory, I pray that He is! My faithful blog readers can tell you that this 3 month blogging journey has been a wild ride. Most days I'm all over the place with emotion, but I pray that every day I can show that this mom is imperfect, yet faithful, and that is the most logical lesson I can share.

Sunday, April 19, 2009

The Sunday Report

Well, it looks like I have another day to procrastinate writing my post for the Mom Logic contest. They extended the deadline until Tuesday, so I'm going to write my post tomorrow night.

So for tonight you get my regular Williams family update:) All is well today. The kids are getting outside a lot more these days which is great! The only downside is that they seem to hit a wall by 6:30 pm each night. There is a great deal of crying and whining going on here between 6:30 and bedtime at 7:45!! I guess the fresh air is just wiping them out. Brady's surgical dressings are still intact. I'm wondering if they will take them off on Wednesday or continue to wait for them to fall off. He doesn't seem to be in any pain now. He continues to travel around behind his trusty "Brady cart." Matt and I have been cracking up about something he said the other day. He loves to say "tiny _____" For example, when playing with playdoh he rolls it into "tiny balls" or he will see a "tiny bird." The other day he rubbed his head and said "tiny hair!" Ha!!!!

Our plans are still in place for our trip to NYC Wednesday. I'm just praying that our very busy day goes off without a hitch. Any slight delay will throw the whole day off, so we'll see! I guess I should pack some extra things just in case (especially diapers if you remember our last airline delay!)

The coming weekend is very busy! Eli, Cara, and Brady turn 2 on Friday and Sunday is our 6th anniversary, my mother in law's birthday, I'm singing in church, and in the afternoon is the Angel's of Mercy spaghetti dinner to benefit Brady. Honestly though, I LOVE being this kind of busy!

Saturday, April 18, 2009

Reorganizing a Bit

What great weather we have had these last few days. It has been wonderful to get the kids outside to enjoy spring! Although putting shoes, hats, and coats on 4 kids isn't always the easiest, one we are outside, it is worth it! Brady is SO much more independent outside this year! We took his favorite walking toy outside on the driveway and he happily pushed it all over the whole time. Imagine his excitement that he is doing just what Eli and Cara are doing!!! I'm such a proud momma to see the three of them toddling around together. We are working on keeping them away from the end of the driveway. So far the only one testing the waters (meaning willing to risk her life by running into the road) is dear, sweet, naughty Cara:)

I'm trying to reorganize my blog a little. I want parents who come here to find out more about neuroblastoma to be able to more easily find the info they are looking for. I have been to many NB blogs and sometimes have spent hours going back and trying to read about specific parts of their treatment. Hopefully by posting links to specific posts it will help people find information. I've also posted a link to Neuroblastoma facts that is VERY informative.

Tomorrow my post will be written specifically for the Mother of All Bloggers contest. It is sponsored by the Mom Logic web forum, so the topic of my post needs to be about what the phrase "Mom Logic" means in my own world of mothering. There is a lot of room for interpretation here, so stay tuned for how I figure out a way to explain how Brady's journey has influenced by vies of motherhood. God bless and have a terrific Sunday!

Friday, April 17, 2009

One Week Until the Big 2!

Can you believe it? My 3 babies will be 2 in just 1 week! I thought the first year of their life would be the hardest year of my life. Boy was I wrong! Sure, changing 21 diapers, washing 18 bottles, and doing LOADS of laundry was exhausting, but nothing could have prepared us for this past year. Isn't it funny in life how you think, "Nothing could be more difficult than what I'm doing right now! I have the hardest life of anyone I know!" Then...BAM! Another one of life's valleys comes and knocks you right on your whiny behind!!! I feel like we have lived a lifetime in the last 4 months. Life before cancer invaded our family seems like a distant memory. BUT, I won't let my fear take over this great occasion. I have my 4 amazing kids with me today, right now, and in one week Eli, Cara, and Brady will celebrate 2 years of life:) We have a small family party planned (Sesame Street of course)! There will be Eli's favorite (pizza), Cara's favorite (milk), and Brady's favorite (cupcakes).

No news yet from the PT clinic. I called yesterday and left a message with the coordinator. We are hoping to start Brady's service the week after next. We also haven't heard back from Sloan regarding any reports from the tumor they took out. I'm expecting that we will have to keep calling them every few days. Maybe when we are there next week they will know something. We are still planning on driving to Elmira Tuesday evening, spending the night in a hotel, then leaving at 7am via corporate jet from the Elmira airport. We will arrive in NJ, get a ride to Manhattan in a van that the Corporate Angels provide (about an hour ride), have our quick follow up with Dr. L sometime during the day, then get back to NJ for a 5pm flight to Elmira and drive the 2 hours home. Sounds like a fun day huh? I'm still cracking up about the dress code! I just keep thinking, "Well at least the whiny two year old eating cheezits, drinking juice, and putting stickers all over the seats is wearing khakis!" Ha!

Enjoy a few pictures from the last week! By the way, I only need 3 more nominations to enter the Mother of All Bloggers contest. Thank you to those who have taken the time to nominate me. If you would still like to help me out, follow the directions under yesterday's post. Thanks:)

Thursday, April 16, 2009

The important things first...Brady continues to be on the road to a great recovery! I opted to not have the home nurse come today and instead took on changing his Broviac dressing myself. I used to have the nurse do it because she had to come for blood draws anyway. Since Brady doesn't need his blood drawn right now, I figured I would do the dressing change. I have only done it 2 or 3 times before so I'm always nervous. I'm not the best at keeping a sterile field:( Matt has to hold Brady down as I do it becuase he just detests the whole process. The hardest part for him is pulling off the old dressing. I think his skin is starting to break down a little, so I know it feels raw. Then I have to clean the area and he just screams, "ouch!" Totally heartbreaking, I hate doing it, but it has to be done. We made it through, and hopefully if the scans show things are stable, he can have the surgery to take the Broviac out! Won't that be a great day!

Another update: Our little friend Nathaniel made it through his surgery in 5 hours. I haven't gotten a recent update, but sounds like things went smoothly, and like Brady the main tumor was removed.

On a lighter note...I've entered a blogging contest. The grandprize is a laptop computer (woo-hoo!) and some free blog publicity. It's an exciting opportunity to share Brady's story, our faith, and raise awareness about NB. Entering is kind of tricky, but I only need 10 nominations to take part (the more the better though). I need the nominations by Sunday night!

Here are the steps:
1. Go to (this is my profile page)
2. Scroll down to Comment Wall.
3. Leave me a comment that says something like "I nominate your blog for the Mother of all Bloggers Contest." You can add your own additional comments as well. I'm trying to focus on the fact that my blog has a heart and a cause!
4. I'm pretty sure you have to join MomLogic in order to leave a comment. I'm new to the site, but it seems like a cool online community of moms.

I appreciate your help and support!

Wednesday, April 15, 2009

Please Pray for Our Friends

Not too much to report today. We had another day spending time with daddy. I got to go to dinner with my best bud which is always a treat:)

Since I don't have an awful lot to say tonight about Brady (who by the way continues to do great!), I want to ask for prayer for 3 specific people I met in NY. Please pray for these children and their families:

Ben: He was our amazing roomate for Brady's 3 1/2 day recovery on the pediatric unit. He is in his early 20's and has Ewing's Sarcoma. He is a Christian and he had the most genuine, caring, compassionate spirit of any young man I've ever met. He was quite sick from the chemo he was receiving, but constantly worrying about how he was bothering Brady (which he never was!). He had this cancer in his midteens, but beat it. Now he has relasped. His doctors in NC told him there was nothing they could do to fight the tumors throughout his pelvis, other than amputate his entire lower body. His father found a doctor at Sloan who could take out the massive tumor and offer him a good prognosis using chemotherapy. Please pray for Ben, a person in the prime of his life fighting this terrible disease. He has some orthapedic issues as well because of the cancer, and we are praying for complete healing for Ben. He has SO much to offer the world!

Eli: Eli is a 5 year old little boy from Iowa. I met his dad Aaron in the online world right after Brady's diagnosis and he has been a great friend to us every since. Eli has been battling Stage IV Neuroblastoma for almost two years. He and his dad spend many many weeks away from home in order to seek treatment at Sloan. Eli has endured so much in the way of treatment, chemo, radiation, surgeries...He has a contagious, enegergetic spirit. Please pray that that the treatment he is receiving will provide complete healing for Eli.

Nathaniel: Nathaniel is an 17 month old boy from California. I also met his mom Gillian in the online world as he and Brady has SO many similarities. He also has Stage III NB with spinal involvement. He had an emergency laminectomy on the day of his diagnosis because the tumor was compressing his spinal cord, just like Brady's. He and his parents are now in NYC awaiting surgery with Dr. Laquaglia tomorrow morning. We are praying for Nathaniel's surgery to be a success and that the surgery will be the final step in his treatment!

Thank you friends for praying for others fighting this fight. Our trip to NY really opened my eyes to a whole world of suffering children and families. I have not been able to stop thinking about these children and others that we met. It is obvious that this experience has changed me forever. I'm certain that we want to make a difference in the world of neuroblastoma somehow, someday. I'm praying that in time God will show us how we can help other families.

Tuesday, April 14, 2009

We're Flying Corporate:)

Well, Matt spent a lot of time today trying to coordinate our travel to NYC for our follow up appointment. It boiled down to saving time, or saving money. We opted to save money:) We will be taking advantage of a Corporate Angels flight which means we will be using donated seats on a corporate jet. We will drive down to Elmira (about 2 hours away) on Tuesday evening, spend the night at a hotel, and then leave from the Elmira airport at 7am Wednesday morning. The flight flies into NJ, about an hour from Manhattan, but they will provide a van into the city. We will go right to Sloan, wait for an appt with Dr. L, and then go back to NJ to catch the return flight at 5:15 pm back to Elmira and drive home. Talk about a whirlwind trip! But the way we look at it is, we will only pay for one night in a hotel and meals on Wednesday, not bad! Can you believe they told us we have to wear business casual on the jet? Ha! I'll follow anyone's rules for a free flight. I just have to come up with a business casual outfit for Brady---I guess Elmo sweatshirts don't count:)

Brady continues to feel great. He has only had 2 doses of motrin today! He is sleeping so well and eating cookies like a champ! Go Brady!

Monday, April 13, 2009

Back in the Swing of Things

We had a great family day today. We were all in our pajamas until 11 or so...definitely a great day:) Matt isn't going back to work until Thursday, so I'm looking forward to a lot of "lazy days" around here (ha! lazy days with 4 kids)

I had a few calls to make regarding insurance and setting up appointments. We have our follow up appt with Dr. Laquaglia on April 22nd. That means we will probably fly down that morning, see him sometime in the afternoon (again, no specific appt time), and hopefully fly back that night. It is tough to stay just one night at Ronald because you have to clean all sheets and towels before you go. We also looked into Corporate Angels (free flights on corporate planes.) There are flights that day, but leaving from Elmira, which is two hours from here. Not sure what we will decide to do yet. We have to figure out if the money saved by using a free flight is worth the extra 4 hours of driving time with a toddler:)

I also called to see if the pathology reports were available from the tumor that they took out during surgery. I'm struggling now trying to figure out who is our "go to" person as far as Brady's cancer treatment. We were hoping to make more of a connection with a doctor at Sloan, but really our trip focused primarily on the surgery. We did speak briefly with a member of the oncology team on Friday before we left, Dr. Modak. He was very kind, informative, and seemed to really understand our concerns. I called his office today to see if he could contact us with the results, but didn't hear back. It's obvious that we have to stay on top of things now. No one at Sloan has our name on their "to do" list. We also called our oncologist here at Strong just to touch base with her.

We are still rejoicing over Brady's progress. Today was another day of exploration and fun for him. The only difference we notice is that he gets more tired before naptime and bedtime than usual..can you imagine how much healing is going on in that little body? Tomorrow we are going to call CP of Rochester to set up Brady's first PT appointment with them. We certainly have a lot of work to do to get him caught up, and it seems like Brady is ready to get going!

Sunday, April 12, 2009

The Best Easter Ever!

Today was one of the happiest days the Williams family has ever had. We decided that Brady was well enough to go to church, so all 6 of us did! He did amazing and never complained of pain at all! He even played in the nursery (with grandma close by his side just in case!) After church we came home and the kids got a quick nap. My mom and mother in law had planned Easter dinner since we weren't supposed to be home. We had a wonderful dinner with all the grandparents, my brother, and his family. It was awesome to see all 6 cousins (all under 2 1/2 remember!) playing together. Brady toddled around the house behind his walking toys all day! He climbed up the slide, went down the slide, and giggled and laughed.

Happy Easter to all!
Romans 6:8-11
Now if we died with Christ, we believe that we will also live with him. For we know that since Christ was raised from the dead, he cannot die again; death no longer has mastery over him. The death he died, he died to sin once for all; but the life he lives, he lives to God. In the same way, count yourselves dead to sin but alive to God in Christ Jesus.

Saturday, April 11, 2009

Happy Easter!

We wanted to take this chance to wish everyone a Happy Easter! We look forward to being together to celebrate Resurrection Sunday and give thanks with our family for the miracles God has performed in our lives. We pray these pictures will remind you of God's provision for our family. They show Brady before surgery, in the days after, a picture with Dr. Laquaglia, and a few since we have been home. We got a surprise call today from the Easter bunny who wanted to come and visit us! The kids were just in awe and we had a wonderful time! THANK YOU EASTER BUNNY! Brady of course was the least afraid, he snuggled right up to that bunny and never really let go! Precious memories for sure. Brady is stunning us with his recovery. Other than being tired a few times, he played today like any other day. He walked behind a push toy for over an hour! At one point this morning he stood up next to me, let go of my shoulder, and just started dancing! Imagine that we were supposed to be in the hospital for at least another week or two!

As far as what is next, we have to go back to NYC for a quick surgical follow up in 2 weeks. Then we will repeat the CAT scans in 4-6 weeks. We are not sure if we will do those locally, or at Sloan. The NB doctor we spoke to on Friday told us that in most cases like Brady's, no further treatment will be necessary! If that is the case, we would then be in a monitoring phase where scans every few months would be required. So, the waiting and journey continue. For today, let us all look to God and be in awe of His grace and goodness! Happy Easter!

Friday, April 10, 2009

Friday updates

Well today will prove to be an adventure. Brady had to have an XRAY today to see if the small air pocket in his lung had cleared up (very common after chest tube). If not they can't clear us to fly. Yes we have considered driving and still are. I'm not sure how he will do strapped in a carseat for that long given where his incisions are. We'll have to see what the doctors think is best. Brady is a little grouchy today...seems to be tired and I'm sure it isn't easy coming off of the stronger pain meds. We are working very hard to find the right combination of oral meds that make his comfortable. I'll update more when we have a plan. By the way...angel flight is a no go for this short of notice.

2:30 We are officially discharged. Brady's chest x-ray was normal so he is cleared to fly. We found a flight home tonight. It will be so great to be back. We met with one of the oncologists. The plan right now is to come back for a post-surgical visit with Dr. L in two weeks and do new scans in 4 weeks. Right now there is no plans for additional treatment. The scans will help determine that. Sometimes when the primary tumor is removed, the small part that was left dies. We also received the urine HVA/VMA (normal substances that increase with neuroblastoma). Before the surgery, Brady's levels were in the 120's/140's, after surgery they were both less than 20. Not quite in normal range, but close. We're going to let Brady nap here for a while before we leave the hospital (he's out cold).

9:30pm Just wanted to let you all know we are home safe and sound. Quite an adventure today, that is for sure. Brady, our little trooper, endured it all so well. All six Williams' together again...I have so much to say thank you to God for tonight, I just hope I can stay awake long enough:)

Thursday, April 9, 2009

Our Little Miracle!

I have to share this news even though it isn't a sure thing. We may be able to leave the hospital TOMORROW! Dr. L came by and wants Brady off of Tordol and just taking Tylenol to see how he does. If he tolerates the pain well, we will be discharged tomorrow!!!!! We are elated and continue to be in awe of how quickly Brady is recovering. Can you imagine, he will be home within 6 days of his surgery...UNBELIEVABLE! Our God is so good...
Now we just have to research some flights for Easter weekend:( We have to clean our own sheets and towels at the Ronald before we go, so if we do get discharged tomorrow, I'm thinking of an afternoon flight on Saturday. We are just so thrilled:)

Thursday Reports

11:15 am Brady had a good night last night after a rough day. He woke up happy and ready to play with daddy! Unfortunately he needed to have his surgical, chest tube, and Broviac dressing all changed. That equaled about 45 minutes of us holding him down and him screaming. Ughh... But now he is all cleaned up and the dressing on his surgical site should be able to stay on until it falls off. He is now just on a regular dose of Tordol for pain. We can give him Tylenol in addition as needed. His appetite is good as well. After the dressing changes we took him for a wheelchair ride and down to the playroom for PT. He stood holding on to a chair and even bent down to pick up a toy from the floor. What a big boy! Everyone is pleased with his progress. I'm going to ask what the plan is as far as going home. I also want to discuss the cancer treatment and what comes next. Since we have been here we haven't even heard the word cancer, we have only been discussing the surgery. I guess I just need to know where we go from here. That's all for now, I will update later today. We are missing everyone so much...

5:30 Brady had a great afternoon. His pain seems to be really well controlled (just on doses of Tordol). He spent a big part of his day disconnected from the Broviac line. We were able to take walks and play in the playroom. He also had great sessions with PT and OT today. He continues standing holding on to the chair, bend to pick things up, and sit independently. Everyone is saying that his recovery is remarkable. Right now we are visitng with Katie who is married to my cousin. They live in's so nice to see a familiar face. Tomorrow a friend of mine from Jackson school is going to meet me for breakfast as she is in town visiting her daughter.

We asked one of the doctors when she thought we would go home. She told us she would give us a better idea tomorrow. We are still waiting to hear from the oncology team.

Wednesday, April 8, 2009



10:30 AM Good morning all! Sorry I didn't post until now. I went back to the Ronald again last night (thank you to my sweet hubby) and didn't feel like carrying the computer bag all that way. Brady had a good night. Matt had him propped to his left side so that the swelling on his right side could go down. It seems to have gone down and even his eye looks better. He ate a good breakfast. We are waiting for the okay from Dr. L to remove the chest tube. This is a tough thing for Brady to have to endure, so we are praying that it is as quick as possible. They will also remove the catheter at that time, so he will be free from tubes (other than his Broviac). We are expecting a visit from the Easter bunny sometime this morning (of course I'll take pictures)...

11:40AM We just had our Easter bunny visit. We woke Brady from a dead sleep just so he could meet the bunny. It was a huge brown bunny and it came walking around the curtain. Brady just stared at it. The bunny was very gentle and started touching Brady's nose and cheeks. Brady just stuck out his little chin and nose so the bunny could pet him. It was so precious. When the bunny would stop, Brady would stick out his chin again to get the bunny to keep petting him. We got him to put his ears on too! Now he is back to sleep:)

1:25pm The chest tube and catheter are out. It was awful, I'm not going to lie. Brady screamed throughout and we had to hold him down. They can't sedate him to do it because he has to breate deeply while it comes out, so crying is a good thing during the procedure. Add this to the list of things children (and mommies) shouldn't have to endure! Brady is down for an XRAY now. Hopefully now that all the tubes are out he can play. The only thing left is the hydration that is going in through his tubies. We are encouraging him to eat/drink more so that can come out soon.

7:30 Brady has had a rough afternoon. He is very out of sorts and agitated. They stopped the major pain meds and have him on doses of Tordol (sp?). That wasn't cutting it so we added Oxicodone orally. He seems to be a little better now. We unhooked him for a while and took him on a wheelchair ride through the unit. We stopped by the playroom and tried to encourage him to sit and play. He really wasn't interested so we will try again tomorrow. There are great occupational and physically therapists here who are attempting to working with him each day. Please be praying for Brady's comfort and for no infection.

Tuesday, April 7, 2009

Good Morning!


8AM Good morning friends and family! We hope that you are still rejoicing this morning after what we are SURE was God's miraculous hand at work during the surgery. Just think, Brady is supposed to be on a ventilator right now in an ICU and he is breathing on his own!!! Amen, Amen, Amen!!! This obviously will shorten his recovery time and give Matt and I so much precious time with him awake!

I came back to the Ronald last night at about 9:30pm. They were still waiting to put Brady into a room, but he was resting comfortably. My wonderful hubby can sleep pretty much anywhere, so he stayed last night. I just got word that Brady did pretty well all night. He would wake up here and there asking for "mommy or daddy" but Matt said he was pretty easily soothed back to sleep. We are hoping to hear more from the doctors today.

Areas for prayer as we continue on:
1. Praise!!! Thank you Jesus for showing us Your awesome power and exceeding all expectation in regards to the surgery. Thank you for guiding the surgeons and for making it possible to remove even part of the spinal tumor.
2. Pray that Brady's pain will be well managed as they want him to try and move around today.
3. Pray that Brady will still free of infection and any other post surgical complications.
4. We continue to pray for complete healing from cancer. There will be tests upcoming and we know that our journey is not over. Certainly we pray with the full belief that God can make anything possible!

Matt and I can't tell you the peace that we had yesterday during the surgery. Knowing that SO many are praying is a powerful feeling and God certainly was faithful in easing our burden as we continually laid them down to Him. Thank you all for being right here with us even though so far away:)

11AM I put two pictures up of Brady at the top of this post. The first is from right now. You can see the chest tube coming out on the left. He is also getting a blood transfusion which you can see coming in on the right. He is resting comfortably and they are hoping to get him up when his lunch arrives. He has had a few crackers and some juice. When he wakes up he comments on what he sees and is very aware. Matt just took a walk back to the Ronald to shower and change. He's hoping to get back before the Dr. L stops in.

5:30 What an afternoon. We got transferred up to the regular pediatric unit on the 9th floor. Within 5 minutes of being in the room I realized our "roommate" was not a mentally stable person. Let's just say we are in a new room now and apparently not the first people to be moved out of that person's room. Our new roommate is very nice, our room is very comfortable, and we feel much better about things. Brady has been up and down today. He is in pain when we have to move him or change his dressing. It is hard to pick him up as usual because his incision is on his side, so putting your hands under his arm to hold him is painful. An area of prayer is for Brady's right eye. It appears swollen and saggy a little. One risk of this type of surgery is Horner's Syndrome which can affect your eye. We just have to kind of wait and watch it. This syndrome isn't a major deal, but also doesn't always resolve on it's own. Dr. L came in and saw Brady and told us that the chest tube and catheter will likely come out tomorrow. He also said we might be able to get home by the end of the week. My heart jumped at the thought of celebrating Easter will all 4 of my little bunnies together:)

Monday, April 6, 2009

Surgery Updates

I will be updating under this post throughout the day. Please keep checking back and scrolling down for latest updates.

10:30 am We arrived at 8am and have been waiting since then. Brady is hooked up to IV fluids through his Broviac. We knew that Dr. L had one case before us, but I guess now there are 2 before us. So, more waiting. We are now down in the surgical waiting area. The 2nd case is in the OR and they will let us know when it will be 30 more minutes. Brady is in good spirits despite not being able to eat or drink this morning. He has been playing with one tub of Playdoh for 2 1/2 hours now:) We were so blessed as we awoke this morning knowing that there were already those praying for us. The prayer chain is filled right up, with 3 and 4 people praying at certain times. I will update once he goes in...
By the way, Brady is wearing his bunny ears and hospital gown!

Noon update: Brady was just taken back to surgery. He did so well waiting all morning, but then at about 11am he started to get very upset. He didn't understand why I wouldn't give him a snack. It was very heartbreaking and frustrating at the same time that we had to be here so early. Matt took a walk in the pouring rain back to the Ronald to bring Brady's stroller and stuff back. We have a pager and are expecting updates every 2 hours. The first hour of surgery will involve hooking up the stimulators that will be used to test nerve function during the operation. Prayers needed!!! I feel peace but already am missing my sweet boy so very much. It was hard to hold him and hear his little voice and know I wouldn't again for a while. As I sit and watch the rain pour I just keep singing the chorus "Let it rain, let it rain.
Open the floodgates of Heaven, Let it rain."

1:50 We just got our first update. Sounds like they just began the actual surgery. The first hour was getting the stimulators set up.

3:45 Just got our second update. Brady is doing fine and stable. The person on the phone said "Dr. L has started the approach." To which I said "what does that mean specifically he is doing." She answered "it means he is doing whatever he told you he was going to do." That is our update. She also said that the neurosurgeon is going to come in and take a look at the spine. We are praying for the possibility that he might be able to access the spinal section.

5:10 Big surprise. Apparently surgery is almost over. Right now we are waiting to speak to the surgeon.

5:27 Miracle on 68th street!!!! Praise God!!!!!!!!!! Just spoke with Dr. L. Surgery was successful. The large tumor in his chest is completely removed. More amazingly, Dr. Bilsky the neurosurgeon was able to remove part of the tumor in Brady's spine. No way to know if he got all of the spinal tumor because of the angle they were working with, but it is a miracle he got any at all. An even bigger miracle...they are NOT going to transfer Brady to the intensive care unit...they are going to try and remove the ventilator and have him breathe on his own. That means he can recover in the regular unit here on the 9th floor. The doctor even said his chest tube could come out as early as tomorrow. This is a MIRACLE indeed! We are over the moon and can't wait to see him. Please keep praying, but know that our prayers have been answered!!!!!

8:45pm Still in recovery with Brady. He is hooked up too many tubes and monitors. He is breathing on his own. Obviously in pain and swollen, but otherwise looks just beautiful! We are stuck here until a bed opens up on the 9th floor. No complaints from this mommy and daddy!! "Every blessing You pour out I'll turn back to praise!"

Sunday, April 5, 2009

Dear Brady

Dear Brady,

Tonight I decided to write to you my sweet little boy. It is my prayer that someday you will read these words and understand how much your daddy and I love you. Every day for the past few months I have opened my eyes in the morning only to realize that you are still sick, and my heart breaks with the start of each day. You don't deserve this sweet Brady. You are a perfect, precious little boy and I couldn't love you more than I do! I love your squeaky voice, your chubby fingers, your silly giggle, and your beautiful blue eyes. Nothing makes me happier than watching you and your brother and sisters play. They love you too Brady, you are such good friends! I wish that I could go back and time and somehow change what has happened. I still don't understand why YOU have to suffer with this disease. I do want you to know sweet Brady that your life has changed me. Your struggle has made me a better mommy and a better person. I KNOW that I have grown closer to God because of you. I wish it didn't have to be because of you being sick, but God is blessing so many people through your life. God has been working in your life throughout all of this. You are an amazing miracle. No mommy has ever been prouder of their little boy than I am of you. I thank God for the two years He has given me with you my sweet Brady, and I'm praying every minute that we will have many years to come to love and laugh together.

I love you with all my heart my brave boy,

I will be updating as often as possible tomorrow. We are going to arrive at the hospital at 7:30, surgery sometime in the later morning and lasting the rest of the day, possibly into evening. We are expecting updates from the OR every 2 hours or so. Your prayers are our source of strength right now. THANK YOU for standing by us!

Saturday, April 4, 2009

Preparing for Battle

We are just getting home from my Aunt's 80th birthday party. Just Matt and I went and we were glad to go and be with our family. We always feel encouraged to be surrounded by their love and uplifted by their faithful prayers. The prayer chain is in the works...if you are wanting to pray, please just pick a 30 minute block and leave your time in the comment section under this blog if you haven't already. It doesn't matter if that time slot is already taken, isn't it an amazing thought to think of all who will be united in prayer on Monday! I am going to keep a list going and will keep it with me Monday...

We are busy packing up again tonight and just trying to hold it together. So many dark thoughts are creeping in my mind in these hours before we leave and I'm praying for God to keep me focused. I'm not sure how to let my baby go into an operating room again, this time for a life threatening operation. I don't know how to sit for hours wondering if he will make it. I don't know how to be hundreds of miles from home and without my friends and family at my side.

Enough of what I don't know...what I do know is that my God is holding us in His arms every step. His grace has carried me this far and all I know how to do is continue to look to Him for every breath that I need. All I know is that when you reach the end of your rope, the only thing you can do is fall into the arms of He that loves you more than any other. That is really all we can do in these next days.

My heart is full with the love and prayers of all of you...thank you for falling in love with our Brady and caring enough to pray for him.

Micah 7:8
Though I have fallen, I will rise.
Though I sit in darkness, the Lord will be my light.

With love,
edited to add: Our flight leaves at 1pm. Also, I keep forgetting to mention, Brady has been standing and taking 2-4 steps then falling laughing into our arms. Steps for Brady...a dream come true:)

Friday, April 3, 2009

Our Adventure Home

In true Williams fashion, our trip home was not without some unexpected events. We left the city at 4:15 and didn't get to the airport until 5:30. We took a lovely tour of Queens to get to JFK to avoid rush hour traffic I think. We had plenty of time though because when we got the gate for our 6:30 flight the plane wasn't even there yet. We were delayed an hour. In the meantime we realized that a container of bubbles in the diaper bad had leaked and soaked through the 5 diapers I had packed. Of course Brady had diarrhea again (I guess this is common after having a CT with contrast). Matt salvaged one diaper and wipes and changed him. He had pjs on which now had poop on them, so I told Matt to put him in the extra outfit I had packed. Oops! We had the outfit, but no extra shoes and socks since he had footed pjs on to begin with I had packed the shoes/socks and that bag was checked. So we put his jeans on over his pooped on pjs. Then we boarded a plane with no diapers and wipes. Once on the plane we learned that we would have to wait for an hour on the runway to take off. It was getting late, Brady was tired, dirty, and wanted to drink. Of course we were leery to give him too much because, well, you know! As the plane began to take off Matt leaned over and told me that he forgot the keys to the car back at the Ronald. So we would have no way to get into the car once we got to the airport. I snuck a text message to my mom as we were taking off to come and get us. We finally did make it home, cleaned up poor Brady, and put him to bed. What a day he had!

We are busily trying to unpack and then repack for Sunday. It is wonderful to see the kids, I'm just kissing and hugging on them until they push me away! We both agree that we just want to get on with things now. We fully understand the seriousness of this surgery, the difficult recovery, and how the journey won't end afterwards...but we know that this is a HUGE hurdle that needs to be jumped over. We just want to get to the other side.

On a lighter note, here are some fun facts from our trip:

1. A one way plane ticket to NYC from Buffalo = $42
A 30 minute carriage ride in Central Park = $40 (including tip--well worth it)
A one way cab ride from JFK to Manhattan = $60 (including tax, tolls, and tip)
How is this possible?

2. You can get some of the freshest, most delicious fruit on the street in Manhattan.

3. Our walk from the Ronald to the hospital is a lovely 10-12 minute walk through a very safe part of town. There are many upscale apartments and hospitals along the way. We are able to stop at a very nice deli/store and get coffee and breakfast on the way.

4. On Thursday on our walk back from Central Park I saw the actress that played Amy's mom on Everybody Loves Raymond (her name is Georgia Engel--she was also on the Mary Tyler Moore Show). She crossed Park Avenue right in front of us. I always LOVED her character on that show!

5. You can no longer get a cup of coffee on an airplane but the two guys across from us could get Jack and Coke. Somehow just not fair:)

6. Every building we were in was at least 85 degrees! At one point, Matt actually reached over and adjusted a thermostat while in a meeting with a doctor. No one else seemed as hot as us everywhere we went!

7. And finally, to my car seat critics...we did not see ONE carseat while in NYC, not one. We were at the airport 2 times, all throughout the city, and did not spot ONE single carseat.

Thank you to everyone who has been calling, emailing, leaving comments, and most importantly PRAYING!!! A dear friend has set up a prayer chain for Monday, with people signing up to pray for 30 minutes throughout the day. If you are willing to pray, please leave a comment with your name and time you can pray and I will add you to the list. Maybe I will make a post regarding the prayer chain and update it as more people sign up! God bless...

Thursday, April 2, 2009

A Better Day

We arrived our appointments at 9am. We waited from 9 until 10:45 and then got to see Dr. Laquaglia in between his two surgeries for the day. He basically just started describing the surgery. Within the first minute I heard his say "major, life-threatening surgery." That is the scary part... He will be accessing the tumor from Brady's right side, without having to collapse his lung. The tumor encompasses Brady's aorta as well many nerves to the spine. For that reason they will be monitoring his neural activity with stimulators throughout the procedure. There is a risk for paralysis, but Dr. L said that he has never had it happen. He does about 100 of these types of surgeries a year, 10 of which are chest tumors, and 5 of those ten are like Brady's. The neurosurgeon will come in during the surgery to see if there is anything he can do to get to the small portion left in the spine, but it is not likely. Dr. L said that the small part in the spinal column could just kind of shrivel up at some point after surgery, we might have to do another surgery, or they could decide to just leave it there and watch it. We were very satisfied with this meeting. Although it is obvious just how busy this doctor is, he was kind and patient, answering all of our questions despite the fact that he was on his way back into the operating room. I told him that we have many people praying for him. He said, "Have them pray for Brady, not me." I laughed and told him that we pray for Brady and everyone of "his team."

After that meeting we went and had lunch and then got a call on my cell that the neurologist was "waiting for us." Imagine that, we kept them waiting..ha! She was a very nice doctor who just wanted to assess Brady's functioning before the surgery.

After that appointment we decided to walk to Central Park and do the carriage ride. It was a long walk (of course I didn't have sneakers) but a beautiful day! Brady loved riding in the carriage and had fun saying "Hi lady" or "Hi dude" to the people walking by. His bunny ears on top of the baseball hat got him many smiles:) We are now back in the room getting ready to pack up and head to the airport. I'm going to do Brady's flush, dressing change, and get him ready for bed here so we can just pop him into bed when we get home. He is an amazing boy and we have really enjoyed our special time with him.

Wednesday, April 1, 2009

Tough Day

I can't really tell you all how frustrating today has been. All optimism left me hours ago, and I guess I'm just downright tired, grumpy, and discouraged.

Here was our day:
8am Arrived at Sloan at which time we were supposed to start giving Brady contrast to drink for his CAT scan
8:00-9:30 Waiting
9:30 Finally got contrast, Brady wouldn't drink it. They had to put a tube down his nose into his stomach and put in all 8 oz of contrast/juice. Then pulled tube out.
9:30-11:30 We were told the scan would be delayed because you have to wait 2 hours after contrast. We also learned that because the scan was delayed, that we wouldn't be able to meet with Dr. Laquaglia today because he needed the scan first, and he was headed to surgery.
12:00 Finally had the scan. It lasted about 15 minutes. Brady woke up really well and was starving. Keep in mind he hadn't had any food all day.
12:00-4:30 We waited for 4 1/2 hours to meet with the oncologist (Dr. Kramer) and the neurosurgeon.
4:30 Met with Dr. Kramer (the oncologist). We have waited weeks for this appointment. It lasted about 10 minutes. Brady was tired, we were tired, Brady was grouchy. She basically told us that with his type/stage of tumor that it would be treated with surgery. We felt rushed, didn't have time to ask a lot of questions, and honestly were really let down about this meeting. She was very nice though...She ordered a 24 hour urine collection. They put a urine bag with a huge tube/bag attached to collect Brady's urine until tomorrow morning. He was VERY upset/tired...still no nap.
5:00 We met with Dr. Bilsky the neurosurgeon. He told us that he WOULD NOT be participating in the surgery to remove the part of the tumor left in the spine. He explained that because Dr. Laquaglia's part of the surgery will be very long/involved (removing the large tumor in Brady's chest) and because he will be going in from the front, that to have to flip Brady and go in to remove the spinal part would be too much surgery at this point. This was a big let down for us. This means we will not get the full-resection that we hoped for. Brady will come home with that part of the tumor in his spine. We aren't sure if they will just leave that part and watch it, or if they will test what is taken out of his chest and then determine if it is aggressive enough to warrant going back in.

6:30 pm Back to the Ronald where Brady promptly had diarrhea and we had to take off the urine once again we won't have his HVA VMA levels. We had pizza in the basement with many of the other families. There are so many people here, so many children suffering. I'm not sure if I will ever be able to fully describe how hard it is to see what we are seeing here...please be praying for all of these families.

So, today we accomplished a CAT scan and two brief meetings in 9 hours. Matt and I are discouraged I guess and maybe had too high of expectations about today. We are meeting with Dr. L at 9am(I'll believe it when I see it) and a neurologist at 10am to assess Brady's motor skills right now.

Brady was a very good boy considering. He wore his bunny ears throughout the day and of course everyone thought he was adorable. Our flight home tomorrow is in the early evening which will put us home kind of late. I will try and update tomorrow after our appts, but we are hoping to do a carriage ride in Central Park before we go.

Pray for me to have restored optimism...His joy comes in the morning!