Good Morning!

I"LL BE UPDATING HERE THROUGHOUT TUESDAY. SCROLL DOWN FOR UPDATES!

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:)

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!"

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,
Mommy


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!

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,
Megan
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:)

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...

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.

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 bag...so 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!