Tuesday, March 31, 2009

We Made It

After all the hassle, all the phone calls...we are HERE! We arrived at 2pm and got to the Ronald House by 3pm. Brady did great on the airplane and fell asleep in the cab (too cute!) His first impression when we got out of the cab was to say "beep" in repsonse to all of the car horn's honking. He then quickly noticed all of the pigeons and people walking their dogs.

The Ronald House is on East 73rd between York and First Avenue. Our room is bare, but very livable. We had to go and get some basic necessities (paper towels, kleenex, antibacterial wipes) so we took a walk South towards Sloan. We had dinner at a little diner and then found a very well equipped pharmacy. We came back to the Ronald and played in their basement playroom which Brady enjoyed a lot! Right now I am sitting in the window area of our room looking up at the tall buildings rising all around us...quite a contrast from home!

Some EXCITING NEWS! In the last few days Brady has been enjoying standing on his own more and more. He will do it for 3-10 seconds at a time and then fall forward laughing. I have been encouraging him to try and take steps and just a few minutes ago he took two solid steps before falling! He insists on wearing bunny ears while doing this, but we'll take it! It really stinks that now we are headed into another surgery and I'm sure he will regress a little again. But, I'm so glad he is gaining confidence!

My frustration with getting times for our appointments tomorrow continues. We have to be at the hospital at 8am for an 11am CAT scan. They told me he needs to drink contrast (that should go over well) before the scan. Of course he can't eat or drink in the morning. I guess we don't have appointments with Dr. Laquaglia, the oncologist, or the spinal surgeon. Apparently we will have to just sit and wait for them to be available. We have no choice, that is what we have to do.

Please be praying tonight for:
1. Brady to have an easy time with the anesthesia tomorrow for the CAT scan. Last time he had that strange fever the night after his test and we were in the hospital for 3 days.
2. That Brady will stay content throughout the long day tomorrow as we wait to talk to the doctors.
3. Pray for our parents at home caring for Eli, Cara, and Allie. Having full time duty of 2 two year olds and a 5 month old is not easy!

I feel so far away tonight, but I'm so glad we can all keep in touch through the blog. Until tomorrow...

Monday, March 30, 2009

Very busy tonight packing...but I wanted to share two uplifting messages I got today. The first is from a friend of my mom's named Vanessa:

I just wanted to pass on a note i got from a friend of mine....Megan you
may know that i graduated from Liberty University in Lynchburg Virginia.
Our chancellor was the late Dr. Jerry Falwell.
> > During my time at LU, I was a classmate of Dr. Falwells youngest son -
Jonathan. When Dr. Falwell passed away, Jonathan assumed the Senior Pastor
roll at Thomas Road Baptist Church. Like his father, Jonathan is a prayer
warrior. He understands the awesome power of prayer and the need to take
our burdens and our joys to the feet of the throne.
> > All this said, I immediately sent a note and a picture of Brady to him.
He called me the minute he opened the note, and asked detailed questions
regarding Brady and your struggle. He took the picture to the congregation
of TRBC and the students at LU last Wednesday during prayer service. The
congregation of TRBC numbers over 50,000 and the on campus students at LU is
closed to 10,000. The throne room was filled with Brady that night and i
know that many will continue to pray for you and check out your blog.
> > He asked my to pass on his personal email to you and was in hopes that
you would feel free to email him any urgent and detailed pray request that
you would be willing to share. He is a father and told me his heart breaks
for Brady and his family.

The second message came from a reader of the blog:
I pray for Brady daily. I found the following on someone else's website, and thought you would appreciate it. "We also received a tentative date for Caitlin’s reversal surgery!! It was sooner than we thought it would be: February 25th. The wonderful Dr. LaQuaglia will be her surgeon. I have told some of you this story about him, but for the others out there, it is quite beautiful. It was Christmas Eve 2007 - a week since Caitlin’s diagnosis - and I couldn’t sleep. I met another insomniac mom, Carlina, in the hospital pantry in the wee hours of the morning, we exchanged stories, and she was able to tell me where the closest Catholic Church was so I could attend services. She also told me that she came to Sloan all the way from Texas with her 1-year-old child because of Dr. LaQuaglia, the chief pediatric surgeon. At the time, I had never heard of him (and obviously didn’t know how well I would get to know him when Caitlin required emergency surgery a couple of weeks later!) She told me that she often went to pray and saw Dr. LaQuaglia there early one morning with the priest after mass. She questioned the priest afterwards and he confirmed that it was indeed Dr. LaQuaglia and that he came each morning to get his hands blessed before going to work to perform surgery on the children. I caught my breath at the thought - how beautiful. As the weeks went by, Caitlin suddenly needed emergency surgery. It didn’t even dawn on me at the time that the man explaining all the risks to Mike & I was the same doctor. It wasn’t until after everything was over and we were thanking him profusely, that he raised his hands up and said ‘Hey, it’s not me’ and looked up to the heavens. Suddenly, the pieces connected and I exclaimed, ‘You’re the doctor that gets his hands blessed every morning, aren’t you?’ He just looked at me and one of the nurses said to him, ‘They’re on to you! They heard about you.’ Since then, I have heard time and time again about families who come specifically to Sloan so that Dr. LaQuaglia can be the surgeon who operates on their child. I was told of a family from Costa Rica (I think….) who didn’t speak much English, but could communicate that they were in NY for ‘God’s Surgeon’. Talk about pressure. But we can’t think of anyone else that we would want operating on Caitlin, can you?!?"

I'm holding fast tonight to God's promises and believing with my whole heart in the power of prayer...

Sunday, March 29, 2009

Family Time

We had a great night together with my brother and his family. Together with their two girls we had 6 kids under 2 1/2 in the house...party!!! It's so sweet to see the way they love and play with each other. Times like this remind me that time with family is such a precious gift. We probably won't all be together for quite some time and that breaks my heart. Hopefully our next get-together will be a 2nd birthday party for the triplets :)

I have a ton of packing and organizing to do tomorrow. I have all of the insurance documents in order so I think we are all set. In two more nights I'll be writing to you all from Manhattan...

I continue to pray daily for Dr. Laquaglia the surgeon who will be operating on Brady. From everyone I have talked to he is a wonderfully humble man. He is able to operate on tumors that other doctors call inoperable and often do complete removals. He performs several of these surgeries a week, offering a chance at a cure for these children. I'm so thankful that God has opened the doors necessary to get us to Sloan and to Dr. Laquaglia. I'm actually looking forward to meeting him and hearing his plan.

Saturday, March 28, 2009

The Best I Can

Not an awful lot to report today. We continue to get ready for Tuesday's trip. Just a reminder we are leaving Tues, coming home Thursday evening. We will be home Friday and Saturday, then leave again Sunday. Surgery is Monday, no scheduled time yet.

I feel a little overwhelmed lately be the responsibility of sharing my family's life with everyone who reads our blog. Certainly we are in awe of the number of people who have read about Brady's story and we are humbled by how many are praying! I guess I just want everyone to know that in my imperfection I might now always write clearly, might now always explain things in the right way, and might not always do things the way other's think I should. I'm just a mom who is doing the absolute best she can right now. I said this when I first started writing and I'll say it again, I'm blogging to tell the story of my precious son Brady who has cancer. I've since realized that by sharing the story of this difficult journey, I'm also sharing our faith. It is my prayer that I'm bringing glory to God through this blog, despite my imperfections.

I appreciate more than words can say those of you who are willing to continue to stand by us, pray for us, and support us with encouragement as we travel this road. Brady is worth it all...

Friday, March 27, 2009

Joshua 1:9

"Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go."

I'm feeling so terrified and so discouraged today. The world of cancer is a scary, unpredictable one. It is agonizing to have your child be in the middle of such a world. My heart has never felt so broken, but still I can feel that hope somewhere inside.

Thank you God for the truth in Your word. Thank you for this verse. Please make me the strongest most courageous mom I can be. I trust that You will be with me wherever I go...You'll be with me as I kiss my sweet babies goodbye, You'll be with me as I hold Brady on the airplane knowing where we are going, You'll be with me as I walk to the hospital with him on April 6th, and You'll be with me as I sit and wait during his surgery. Thank you for your promises, and thank you that they are true for me, for Brady, and for everyone who trusts in You. Amen

Thursday, March 26, 2009

Ironing out the Details

Today was another day of planning and preparation. Brady had his last visit with our home nurse (until after we get back) and she helped me plan what supplies we will need to bring with us. The medicine that we flush his tubies with has to be refrigerated and the access cap has a needle on it, so I'm thinking we need to check the supplies in our luggage.

Tonight I worked on a schedule for who will be with Eli, Cara, and Allie while we are gone. We are SO thankful for our parents, family, and friends who are helping in this area. We have also worked it out so that my mom can fly down and be with me when Matt flies home. Then his parents will come down and be with him for a few days when he goes back to NYC. I used my "teacher skills" to work out this complicated arrangement!

Please be praying for God's protection over Brady even right now. He is acting moody these days and his appetite is sometimes off. We are always worried that the cancer is spreading somewhere in his body...As much as we don't want to leave home, we just need to get to NYC and get this tumor out!

Wednesday, March 25, 2009

Answering Your Questions

Today has been another day of insurance headaches. Here is the bottom line at least how I understand it today: The doctors we are seeing at Sloan DO participate in our insurance, however we have to seek prior authorization for procedures done on an out-patient basis because we are technically traveling "out of network" for treatment. Once Brady is in the hospital, all care will be covered without having to do this process. So, for all appointments and tests next week I have had to call separately to our oncologist at Strong and request that they will out a form documenting medically necessity for whatever the procedure and then send it to the insurance. The insurance company then approves it and sends the approval on to Sloan. My suggestion? Once a child gets a cancer diagnosis, someone should authorize all treatment, scans, and tests that bring that child closer to a cure. There would be no reason to want frivolous testing done on your child, so it seems this system would be cost effective for everyone involved. Why should we all waste so much time calling, faxing, and filling out paperwork when it is ridiculously obvious that my child is sick and needs this treatment to live. Sorry, I needed to get that out to a willing audience:)

I also found out that Brady will need CT scans done under anesthesia while we are there next week. Apparently they want areas done that weren't done at Strong on Mar6th. So, we are squeezing three appointments and CT scans into our 1 1/2 days of time available. It is going to be difficult to have Brady with us, probably grouchy and tired from anesthesia and be able to focus during these appointments. We both want to be at all appointments, so we will have to make it work!

Now to answer the questions posted yesterday:
1. Any news on getting approved to see our "doctor of choice?"
I think I answered this one above. Things are falling into place, but this is still an area for prayer.

2. How are the other triplets handling Brady being sick?
Eli and Cara are handling things so well. The toughest part for them has been the times when Matt, Brady, and I have been away. Our parents help out a lot which is wonderful, but also it is confusing to them to have so many adults in charge! Cara certainly pays attention when Brady is getting his tubies flushed or dressing changed. She doesn't like when he cries and will come next to me and pretend to cry herself. Eli is quite oblivious to everything going on, he is a happy-go-lucky type kid. Other than that they treat each other much the same as always. Brady is actually starting to bully Eli a little. He loves to wrestle, Eli doesn't, so Brady crawls around after Eli and tries to tackle him. Eli justs runs the other way!

3. How long will the surgery be?
We won't know this until after the surgery! I think Dr. L will give us an estimate next week, but I have heard that his answer will be "it takes as long as it needs to." From other parents I have spoken with, Dr. L is meticulous during surgery and peels away cells one by one to make sure that he gets all he can. His goal is always a complete resection (removal) of the tumor. I have heard some surgeries that have lasted only 3 hours, some as long as 12.

4. Is Brady's hair falling out now that it is buzzed?
Actually we think Brady's hair is starting to grow back in. He never lost his eyelashes which made mommy so happy! It seems as though he has some new fuzz coming in on that cute head of his. I'm not sure how long it takes to come back fully after chemo.

5. Will he need more chemo after surgery?
The goal of surgery is to achieve NED (no evidence of disease) status. We will have to repeat the MIBG scan after surgery to see if any NB lights up. If not, then we achieved NED, if so, then we decide what to do next. We will have to rely on the advice of the doctors at Sloan and our own research to decide what to do next. We are always prayerfully considering the best path to take. NB is an unpredictable and scary disease. Relapse is VERY common even after achieving NED. We are willing to be more aggressive with treatment now in order to hopefully lessen the chance of relapse. That might include more chemo.

Thank you to all who submitted questions. If you ever have more, please feel free to ask. We hope to raise awareness about NB through Brady's story and want everyone to learn as much as possible about this disease.

Tuesday, March 24, 2009

Anyone Have Questions?

I thought I would surprise all of our faithful followers and post mid day today. Frankly I'm too tired today and hope by 8pm that I'm curled up on the couch maybe watching American Idol.

Allie is going to be just fine! Thank you Lord!!! She does have a ventricular septal defect, 3 small holes in her heart. However, the doctor assured me they are very common and that it will resolve on its own. We will check it again in 1 year. Allie was an amazing baby throughout the 2 hour appointment. They did lots of tests and she even had to lay still for 30-40 minutes for an ultrasound. She actually just drifted off to sleep and I got to lay next to her. Everyone in the office agreed she is a dream baby!

Many people tell me that they don't know how to leave comments on the blog. I wanted to give instructions on how to do so because I thought it might be neat for people to be able to ask us questions today if they have them. I realize from talking with friends and family that people have many questions about Brady and his treatment. So today is "Tuesday question day" ask away and I will post the answers in the blog for tomorrow. Here are directions for how to leave a comment:
1. Under this post you will see small writing. On the right side you will see "# comments" for example "5 comments." Click on that.
2. A new screen will open with the post and then comments already written underneath. Scroll down.
3. You can type a comment in the white box. Write you name in the white box after your comment.
4. In the small white box under the comment box it will say "select profile." The easiest way to do this is to scroll down and choose "anonymous." If you remember to write you name in the comment box I'll know who you are.
5. Then just click Publish Comment and your comment will be posted.

I look forward to answering any questions:) Please keep praying that God will continue to open doors to get us to NYC...just one week away...

Monday, March 23, 2009

Another Manic Monday

I was quickly zapped back into the "cancer world" today. I had my list of phone calls to make, but was going to wait until naptime so that I could hear the person on the other end of the phone (ever try talking on the phone with 3 two year olds and an infant in the background?) The calls started coming in by about 10:30. To start the day I found out that we need to continue to get authorization for each appointment we have at Sloan. We already got authorized for one office visit with the surgeon, but now we needed to get it for the neurosurgeon who is going the spinal part of the surgery as well as the oncologist who will meet with us. I had to call Strong so that our oncologist could fill out the form and fax it to the insurance company, who can then send a letter of approval to Sloan. Then I got a call from my wonderful case manager (thanks for staying on top of things Priscilla!) who told me that Dr. LaQuaglia doesn't participate in my insurance...I held back the tears and just thought to myself "nothing is stopping us at this point!!!" I found out that we need to have a letter sent to the insurance company explaining why we have to seek treatment at Sloan rather than doing treatment locally. This isn't exactly true though, I'm sure there are plenty of surgeons who would do the surgery in Buffalo or Rochester. HOWEVER, we want the best. When you go to buy a computer, or a car, you research different brands, and decide which one is the "best" one you can afford and you go with that one. Obviously when it comes to allowing someone to operate on our child, we are only going to allow the best possible surgeon to do so. Through much research it became clear that Dr. LaQuaglia is the best. So I called his office to see if he could write a letter to the insurance company justifying why HE needed to do the surgery. Apparently they have dealt with this type of thing before, so we are praying that we will get approval. If not, at least we will have a week to appeal.

Other news of the day is that we secured a room at the Ronald in NYC. We have a room reserved for a month and can extend our stay if we need to (or shorten it!) I also called JetBlue and registered Brady as a "lap child" for our flights. Can you believe that he is free on the way down because he is under 2, but his birthday is April 24, so we will have to buy him a ticket home!!! Ha!

Allie's appointment is tomorrow morning at 9am at the Strong Pediatric Cardiologist. I'm praying for an "in and out" type appointment. If anything is wrong I plan on checking myself into the mental health ward:)

I've always loved the month of April. Matt and I got engaged in April and I knew we should get married in April too, so we did! 3 years later we had our precious triplets in April. Now this major surgery and life-changing trip will happen in this month. I'm praying that God continues to pour out his blessings in this month of my life.

Sunday, March 22, 2009

Date Day

Today was a great day! I brought Eli and Cara with me to church this morning. Daddy stayed home with Brady and Allie. After church we of course had to come home and watch the Syracuse game and then Matt and I went out on a date! Of course that means a little shopping and dinner to us old married people. It was a nice time for us just to talk without the kids' noise in the background (although I love their noise!) We figured it will be a while before we get to go out again:( The kids got to spend some quality time with Grandma and Grandpa...a great day all around.

Tomorrow I have many phone calls to catch up on. I have to get in touch with the social worker at Sloan about staying at the Ronald, our insurance company, the airline, and the cardiologist where we are taking Allie on Tuesday morning. Another busy week begins...

We continue to hear from people from all over the world who are being touched by Brady's story. Praise God for letting His goodness shine even in this difficult circumstance...

Saturday, March 21, 2009

And the Rug Raffle Winner Is....

Us! Woo-hoo! Our wonderful friends at the Floorstore in Canandaigua
(http://www.floorstore2000inc.com) organized a rug raffle with proceeds benefiting our family. The winning ticket was drawn tonight and the person whose name was drawn asked that the prize be given to us!!! Thank you to our "rug angel" and to Matt and Michelle for helping raise money for our family! We have been talking about getting a new area rug in our living room for a long time, but it is one of those "wants" not really a "need." After 4 kids spitting up on the poor old thing, I'm looking forward to saying "buh-bye" to it for good! What a blessing...

Not too much news to report today. I booked our plane tickets last night. We fly to NYC Tues Mar31st and fly back Thurs April 2nd. We will be home for Friday and Saturday and then fly back down on Sunday April 5th. I didn't book return flights because we just don't know when that will be.

By the way...we have a lovely purple rug that is available first come, first served, free of charge:)

Friday, March 20, 2009

We Have An Appointment

At 4:15 today we got the call we have been waiting for! Sloan called with both a consult appointment and a surgery date. The pit in my stomach hit an all new level as I wrote the dates down on my calendar. We will meet with the oncology team and the surgeon Dr. Laquaglia on Wednesday April 1st (also a meeting with a neurosurgeon either Wed or Thurs). Brady's surgery will be Monday April 6th. Our plan right now is to fly down Tues March 31st and hopefully get a room at the Ronald (we will find out about that next week). Wednesday will be a day of appointments and possibly one appointment on Thursday. Then we will fly back Thursday later in the day. We thought it will be worthwhile to be home Friday and Saturday. Then Sunday later in the day we will fly back and be there for surgery Monday. From that point we will take it day by day. Matt and I plan on being there while Brady is recovering in intensive care. After that, one of us will fly home for a few days and then we will switch. Whoever stays with Brady will have to stay in the hospital until the other person returns.

So there is the plan. I'm going to work on researching some flights tonight. There are a ton of details to work out...what to bring, what not to bring. Several of my online triplet mommy friends have told me that people don't use car seats when traveling by taxi in the city!!??! I'm not sure if that applies to rides to and from the airport as well...it seems crazy! If that is the case we won't have to bring one. Of course we will have the stroller and everything Brady will need for 3 weeks or so.

Obviously there are many areas for prayer right now. My soul can find peace when I think of all of our friends and family faithfully lifting our names up to the Lord. Please continue to pray:
1. For Dr. Laquaglia the surgeon who will be performing this very serious surgery. He is the best there is, but we know who will be guiding his hands as he operates on our precious boy.

2. For Brady as he enjoys a few weeks at home and then a few scary weeks once we are in NYC. We continually pray for his complete healing. We continually pray for God to bring him comfort and security even when he hurts.

3. For Matt and I as we make plans to split our family. This situation saddens me so greatly...please pray for peace in this area.

4. For our parents, family, and friends who will be helping care of Eli, Cara, and Allie when we are away.

I also wanted to let you know that the Brady Bracelets are in! If you would like to sell some at your place of work, church, or community event, please email my brother Andy at stepsforbrady@gmail.com

Thursday, March 19, 2009

The Plan is There is No Plan

No news yet on when our appointment will be. I called this afternoon, frustrated because I hadn't heard from them. I got the same old answer...they are working on their schedule still and as soon as they know, we will know. I guess because we are doing the consult and surgery in the same trip, there is a lot more coordination that has to take place. So we wait...

Not too much else going on today. I ran some errands and got the kids some things for Easter. Even though we all won't be together, I want the kids to look their best for church on Easter Sunday morning:)

I'm really hoping to maybe hear from Sloan tomorrow, or else the weekend will be here again. Please continue to pray for our Brady. We are praying that the tumor is stable during this waiting period...

Wednesday, March 18, 2009

Psalm 55:22/update video

Here is the Brady video:

Psalm 55:22

"Cast your burden upon the LORD and He will sustain you; He will never allow the righteous to be shaken."

I read this verse, one I've read several times before, a few days ago in a devotional. It has been stuck in my head ever since. The first part of the verse is something I'm learning to do more and more everyday. All of the trials, all of the worry, all of the anxiety...I'm working so hard every day just to lay it all down to Him. And He is sustaining me! Am I the picture of perfect peace? Definitely not. But I am being sustained. The 2nd part of the verse talks about "the righteous not being shaken." I certainly feel like I've been turned upside down and shaken! But, I'm still going to cling to the hope that God will see us through this...I'm praying that God will sustain my faith, that it won't be shaken.

In the past week it is almost like life is "normal" again (as normal as life can be with 4 kids under 2!) Brady seems so healthy...he is gaining new skills, new words, he laughs, he gets mad, he tackles his brother. It's very sad for me to think of plucking him once again out of his home and taking him to a place where they are going to "make him sick." I know the surgery is going to try and get rid of the tumor, but the risks of a surgery like this are very real, the setbacks are disheartening. So, there I go again with those burdens...please be praying that I can just keep surrendering them to He that has faithfully sustained me so far. Thanks for bearing with me through that little "therapeutic release!"

Sloan did call today and told me that the team had reviewed Brady's information. They are trying to set up a time for him to come for consult/surgery. The office kind of put us on "red alert" that it would probably be the week after next, but it could possibly be next week. Hopefully we will hear from them tomorrow.
The preliminary report for Cara's MRI looked good, now they go through it with a fine-toothed comb.

Matt is working on uploading some great video. I will update later...(Brady stood unassisted today for over a minute!!!)

Tuesday, March 17, 2009

The Storm Rolls On

The day started off with a bang. The hospital called to tell me that Cara needed a recent physical before they could do the MRI. I knew we were in trouble because she hadn't been to the doctor since October. I called the new pediatrician's office and she was amazingly accommodating. She told me they would fit Cara in at 11:15. So, instead of Matt taking her, I packed her up and took her to the doctor for the physical then on to the hospital for the MRI. Matt wasn't due home from work until 11:15, so he took Allie to the doctor at 1pm.

Cara was scheduled for 1pm...she didn't even go in until 2:30. So the poor thing hadn't eaten since 7pm last night and she missed her nap time. She was VERY good though, charming everyone she could find of course. I got to go with her as they put her under anesthesia and she did fine. She was done at about 3:45. She woke up really grouchy and tried to pull out her IV (that's my girl!) She cried most of the way home, but after a few minutes home she was fine. The radiologist came out, and knowing our situation, she looked at me and told me there was nothing "catastrophic" viewable on the scan. We won't get the details until tomorrow, but I can live with nothing catastrophic until then.

On to Allie...unfortunately today we found she has a heart murmur. The doctor detected what she thinks is a ventricular septal defect, basically a hole in the lining between the lower chambers of the heart. Most of the time these will correct themselves without incident. However, she did want us to see a pediatric cardiology specialist. So, off we go to another specialist next Tuesday. Other than that, she is the picture of health, a real butterball (92% in height & weight). She is the first Williams baby to make the normal growth curve by 4 months...go Allie!

I know you are probably thinking "what next?" Yes, I think that way too...A LOT! It's really easy to get stuck in the "why me" way of thinking, I do it at least 5 times a day!!! I'm trying, trying so very hard, to focus on the hope that I have in my faith. One of my new favorite songs:
"Our Hope Endures" by Natalie Grant

You would think only so much can go wrong
Calamity only strikes once
And you assume this one has suffered her share
Life will be kinder from here
Oh, but sometimes the sun stays hidden for years
Sometimes the sky rains night after night
When will it clear?

But our Hope endures the worst of conditions
It's more than our optimism
Let the earth quake
Our Hope is unchanged

I just have no doubt that God is right there with us, everyday giving us strength, putting wonderful people in our lives, and brining so many people together in prayer!

Nothing from Sloan today. I'm planning on calling tomorrow to check on progress. Thank you for your prayers today:)

Monday, March 16, 2009

Sunny Days

More fun in the sun today. We spent a few hours outside today after nap time. Grandma Sandy and I took the kids out and played in the driveway and for a walk...so fun!

I just got a call from our oncologist, just to check in. She spoke with Dr. Laquaglia's office today and they have received everything they need. Just think, in the next few days they will be looking at all of the reports about my Brady. I feel like it is a part of him down there. It makes this whole next step so real. I know that phone is going to ring in the next few days and they will tell us when we need to be there. I'm struggling when I look at him, he seems so healthy and happy. I'm trying so hard to focus on this surgery as a huge blessing...it will hopefully get most of this cancer out of his body. It is tough though to think about taking your innocent child away from home, knowing that he will be in pain, knowing how hard it was to watch him in the days immediately following the last surgery.

We finally decided on a plan for tomorrow. I was dragging my feet in "picking" which appointment I would go to. Matt is going to take Cara, I'm taking Allie. I HATE that I won't be there with Cara, but I know she will be in the safe comforting arms of her daddy. I think Matt knows that I need a break from the stress of all of these procedures. Keep Cara in your prayers as she can't eat anything all day, and can only drink until 10:30. Her scan isn't until 1pm. So instead I go with my precious baby for her 4 month shots:( I'm actually looking forward to the first appointment with our new pediatrician, and to see how much our butterball weighs!

We are so thankful for everyone's continued prayer and support of our family! God is reaching out to so many through Brady's life. I'm so proud to be his mom:)

Sunday, March 15, 2009

Sunday the Way it Should Be

Yes we all made it to church...yay! Several people commented that we were even early. I just loved seeing the 6 six of us sitting there together, well at least for the first 25 minutes. The kids love the praise music and have fun pointing out all of the people they know at church. Thanks to everyone who helped us get in, get out, and everyone who helped hold someone...it takes a village right?

After the kids' nap, we went for walk outside. Matt pulled the triplets in their choo choo wagon and I pushed Allie in the stroller. It felt so normal that I let my mind forget about cancer for a while. Our town has a great new walking path that is all paved. In order to get there you have to go over a small wooden bridge...we call it Brady's bridge. The kids, especially Brady, love nothing more than going over the bridge...FAST! I sat back with Allie and just soaked in the moment as I listened to their giggles and squeals. As soon as Matt crossed over, Brady would start saying "more bridge!" In my heart I just wanted to stay in that park forever.

Our goal for this week is to get an appointment at Sloan. A few parents have told us that they only got 3-4 days notice for an appointment, so we are expecting they could tell us to be there as early as Mar 24th (they only have Tues appts). Cara's MRI is Tuesday and so is Allie's 4th month appointment.

Saturday, March 14, 2009

Happy Birthday to Poppa!

Tonight we celebrated Grandpa Ron's (aka Poppa) birthday at our house. Thanks Deb R. for the delicious turkey dinner (how nice to entertain but not have to cook!) The kids had a great time playing in our basement playroom. It's great to see Brady doing new things with ease and doing things he did before but with more confidence. Sliding down the play slide was always hard for him because he lacked balance to stay uright as he went down. He is still tentative, but can certainly go down and not fall back as he slides! Tonight he was marching in his crib while hanging on to the rail (and giggling of course!)

I wanted to share with you about a family we met at Strong on the day of Brady's last CT/MRI. Our favorite nurses, Nancy and Sharon, told us while we were waiting that another child was suspected of having NB at Strong (counting us that is 3 kids in a month!) She asked us if we would be willing to speak with them because their son had the next appt for an MRI...of course we would! They are a wonderful couple and their beautiful baby Trey is believed to have NB in his chest. He is about 7 months old (I think) and has the most gorgeous brown eyes:) They were right where we were the week we found out about Brady, my heart broke to think that two other parents were feeling what Matt and I felt when we learned the news. Trey is having surgery on Tuesday, we might even see them because one of us will be there with Cara that day. This surgery will begin the whole process of identifying the risk category and that is a difficult and scary time. PLEASE remember this family in your prayers. The statistics are in their favor...a diagnosis before 18 months is generally quite favorable.

Hopefully tomorrow I will have a good report about our church outing:) Well, hopefully we will at least make it there and not be too disruptive!

Friday, March 13, 2009

An MRI for Cara

Cara's appointment with the eye specialist went well today. Remember we were bringing her there because for a year now she has tipped her head (almost 45 degrees) to her left side when looking at things in the distance. I brought several pictures to show the doctor of her doing this and he was quite surprised at the severity of the tilt. He did an eye exam and noted that her right eye is moving in an upward and out pattern. This is consistent with 4th nerve palsy (what I had googled and suspected it was). The problem is that last time he noted this happening with the other eye, so he hasn't established a clear pattern. He wanted to wait three more months. He knew by my facial expression that I was upset by that suggestion. I calmly and politely explained our life in the last two months and told him why I was no longer comfortable with a "wait and see" approach when it came to diagnosing problems. He was VERY kind and understanding and he instantly told me that he would order an MRI to rule out something more serious. I asked him "what is the worst thing it could be?" and he told me "a brain tumor, but don't worry, it isn't." He said that the MRI will most likely show nothing but it will give me peace of mind. At that point we will watch it for three more months and see if the right eye continues to show that upward, outward movement. Once a pattern is established and if the head tilt continues, he will be confident that it is 4th nerve palsy, and then a surgery will be necessary to correct. This I can handle... So we called our favorite MRI nurses Sharon and Nancy at Strong and told them that we will probably only be in town next week and if they could squeeze us in that would be great. They got a cancellation, so Cara will have her MRI on Tuesday. Just like both of Brady's MRIs, she will be under general anesthesia (yuck). Unfortunately the appt is the same day as Allie's 4 month appt. Allie really needs to get her 4 month shots, and we can't reschedule due to Brady's surgery coming up...SO, Matt will take Allie and I will take Cara or vice versa. By the way, Cara was darling throughout the appointment...she was flirting with an older man in the hallway saying "Hi guy! Cara, pretty!" What a nut...

The only word from the insurance company was that we will only be able to get approval one step at a time for now. That means we have our first appt at Sloan approved, from there, the doctor at Sloan will have to document medical necessity for the surgery (uh, it's a tumor??!!??) and then we will submit it "urgently" while in NYC. Sounds like more of a headache, but this is the way the world on insurance works.

Matt is trying to upload a video right now of Brady doing some walking while holding onto grandma today. He is so much more coordinated and quick with his movements. It seems all that is lacking is a little strength and balance. We did cancel our PT appt for next week as we have way too much going on. It didn't seem logical to go to one appt and then have to take a break while we are in NYC. We will start up as soon as we are home again. UPDATE: CLICK BELOW TO SEE THE BRADY VIDEO!!

Something to pray about: We are going to try our best to get all 6 Williams TOGETHER in church on Sunday morning. This is so important to me as I don't know when we will be able to do this again. Be praying that God blesses our hearts and that we have a wonderful time worshiping together with our church family.


Thursday, March 12, 2009

Taking a Deep Breath

Another day, another series of frustrating phone calls. I'm talking to several nice, well-meaning people every day. However, progress is slow and I can't believe that in the year 2009 when a child has cancer, that it can be this difficult to get an appointment and to get your insurance to cover it. Here is the news from today:
1. Sloan received the fax (2 times actually) of all Brady's records.
2. The CT scans and MRIs are in the mail on their way to Sloan.
3. The pathology dept is preparing slides to be sent to Sloan.
4. Our insurance company has only approved a "2nd opinion consult" at Sloan. This is enough to get us an appointment, but that is it. This is an obstacle, but I have our case manager (who is wonderful)working on it.

Sloan will not pass Brady's info on to the medical team until they have the pathology slides in their hands. Hopefully, they will be in the mail tomorrow. The office staff at Sloan loves hearing from me everyday I'm sure, I think that is why they finally caved and told me that March 24th might be a possbility for an appt if everything is in order.

Brady is down to needing bloodwork only on Thursdays. He continues to be brave and adorable throughout the whole process. I'm calling Strong tomorrow to inquire about the catecholamine results that we still don't have.

Please be praying:
1. For Cara and her appointment with the eye specialist tomorrow. We are praying that whatever is wrong will be easily fixable. Pray that she will tolerate the exam well and I will be able to clearly articulate what is going on.

2. For me, as I'm really struggling with anxiety and worry right now. The details of how to keep our family going while existing in two different places is overwhelming. There are so many small details to think about as far as being in NYC, living in a hospital, traveling back and forth, arranging help at home...My heart is heavy as I know what is coming for Brady. It was excruciating to watch him endure the last surgery/recovery, my "mommy heart" is breaking at the thought of it.

3. For our parents who continue to bear a lot of the "burden" of helping us with the kids. Keep in mind that we still are attempting to raise 4 kids under 2, that alone is an exhausting job. We are in the midst of the "terrible 2s" and trust me, the grandparents put up with a lot! We praise God for them, but need you to pray for them as well.

God is truly revealing himself to us through the tremendous blessing we have everyday in our friends and family. It is impossible to deny the awesome power of God when we look at all He has done for us!

Wednesday, March 11, 2009

I need a secretary!

What exactly happened today? Days are passing by one by one, and we don't seem to be getting anywhere!!! I called Sloan this morning to see if they received the fax yet, they hadn't. They told me that they already had called Strong and that they were working on it. Seriously, how hard is it!!!! Short of driving the papers to NYC myself (which I did consider) I decided to take a deep breath and focus on the insurance stuff. I spoke with the insurance person at Sloan who told me approval through our insurance was pending. He gave me a reference number and told me that the insurance company would be calling. Given that very few things ever go according to plan around here, I decided to call my case worker and check up on what the rep at Sloan had told me. Come to find out the reference number he gave me was a number related to a claim from one of Brady's stays at Strong...huh? The case worker was stumped as to how/why he gave me that number. She gave me a link to the authorization form that needs to be filled out and I immediately called Strong and our wonderful NP is on the job. She is fantastic and when she says things will happen, they do. Progress today?....I guess a little, but I feel no closer to Sloan than I did yesterday. It's funny to want to go somewhere so badly, yet the thought of actually going there scares me beyond belief. It's weird because the last time Matt and I have been on a trip is when we went to NYC with friends when we were first married, before kids! Needless to say, this doesn't feel like a vacation!

So, faithful friends, please keep this process in your prayers. I just keep praying that God will continue to open the doors necessary to get Brady to NYC. I'm starting to pray daily for the surgeon, Dr. Laquaglia. I have heard that he is a man of faith and that he gives all the glory to God for what he is able to do surgically. Hopefully tomorrow will bring news of some progress! One more thing, Brady has an appointment next Wednesday at CP of Rochester to start physical therapy. We are hoping to get in a few sessions before we go.

Tuesday, March 10, 2009

One Step Forward, Half a Step Back

Sorry for the late post. I had a chance to have dinner with my best friend...how wonderful!

Here is the latest. The oncologist called us back this morning. She is on her way out of town, but wanted to give us the info she has received from Sloan in more detail. Basically, she told me that she faxed all reports to them (about 325 pages!) and that I needed to call Dr. Laquaglia's office to talk about insurance. I called them during nap time and it was quite frustrating. They told me they have never heard of Brady or spoken to our oncologist...huh??? She also said they hadn't received any fax in regard to Brady. She went through the whole song and dance about what paperwork they would need to even have a chance at an appointment. I reiterated that I knew what they needed because our doctor had called there yesterday and since passed the info on to us. I also told them that our doctor had spoken with someone who told them that late March might be a possibility for surgery. I hung up with them and instantly called the NP at the oncologist's office. She is SO fabulous and got right on it. They re-faxed everything and had no explanation for why Dr. L's office claims to know nothing about Brady. All I know is that they will know quite a bit about Brady by the end of the week because I will be calling daily. Here we go again, advocate, advocate! The secretary did tell me that late March could still work if we can get things together quickly. That is an area for prayer!

I'm in touch with a wonderful case manager at our insurance who has been a great help. She is helping us with the details of making sure things are covered and approved ahead of time.

We continue to rack our brains as to how this whole scenario in NYC will play out. There is just no way to predict how long we will be there and all of the details. We are also in touch with a few families who have walked this road before. We've met one family in cyber world who spends a lot of time at Sloan and to whom I've been able to ask a lot of practical questions. Please pray for this family...their son Eli has Stage IV NB and his battle is much more involved than Brady's and he is a true warrior. There are so many children fighting this fight. My heart aches every day thinking of families who spend months apart in order to seek treatment at Sloan.

Brady is doing great! I gave him his "sink bath" which involves taping up the tubies and being careful not to get the site wet. After his bath I flushed both lines. No tears from my brave boy! He has come so far...my heart bursts with pride at how amazing he is:)

Monday, March 9, 2009

Finally a Reply from Sloan!

Update: Brady's blood counts are back up, with the exception of his platelets. He doesn't need the GCSF shot anymore...horay! Still waiting for a call back from the doctor to discuss her conversation with Sloan...thinking she might call tonight.

I asked over the weekend for prayer regarding a response from Sloan. Prayers are answered! Our oncologist called this morning to tell us that she heard back from their office. The next step is to organize paperwork, scans, and insurance information. Apparently their doctors want all of Brady's info in a certain format. This process will take a few days, then all info will be sent down there. Our doctor asked what Dr. Laquaglia's surgical schedule looks like in the coming weeks. The office person thought maybe the end of March would be a possibility. So I'm setting my sights on about 3 weeks from now. Matt had asked the doctor how she thought the surgeons would access the tumor. Our doctor thought maybe it would involve collapsing Brady's lung in order to get at the mass in his chest. Then of course a neurosurgeon would need to be involved to get the remaining tumor out of his spine. This leads me to think that our trip will be at least a few weeks.
Of course worries about travel arrangements, time away from home, and organizing help with the kids comes to my mind. I have emailed a group called Corporate Angels who "donate" extra seats on corporate jets to cancer patients who need to fly to places for their treatment. They can only work on getting you seats a week or so in advance, so we have to make other arrangements with a commercial airline once we get an appointment. Then we contact them and see if there are seats available through their organization. Matt and I are thinking that we will both go down with Brady and stay until his surgery is complete. Then we will take turns flying home to be with the kids for as long as he needs to recover.

I know that with prayer these specific needs and concerns will be taken care of. We serve an awesome God, and as my new favorite praise song says, "He can move the mountains!"

I'll update later if we get any more info, we are waiting on catecholamine and blood work results!

Sunday, March 8, 2009

Quiet Sunday

Not too much to report today. Brady had a great night and all 4 Williams survived the time change. They all slept in an hour later and then we just pretended it was a normal day. Brady is eating and playing wonderfully today.

Matt has tomorrow off as we are supposed to go to a follow up appointment with the oncologist tomorrow. I'm not sure if we still need to go since we spoke to her in the hospital. I'm going to call her tomorrow. We also are anxious to get the catecholamine results.

Allie needs a 4 month appointment with our new pediatrician this week. We LOVE our new doctor already. She came by to visit Brady both days were in the hospital this last time. What a great impression that made!

Cara has an appointment Friday with an eye specialist. We are concerned that she tips her head very far to one side when looking at things in the distance. It is as though she is trying to use only her right eye. I took her back in October and the doctor wanted to wait and watch it for 6 months. Well, here we are 6 months later and it is still a problem. I've been googling lately about it and think it sounds a little bit like 4th nerve palsy. I know doctors just love it when parents do a google-diagnosis, but hey---I've learned to be assertive. I've read that an MRI is often ordered in cases like this and that makes Matt and I so very nervous. Please be praying for this upcoming appointment.

Our biggest goal this week is to make contact with Sloan. I'm praying that by the end of the week we will have a plan.

Saturday, March 7, 2009


Hooooray! We are home! Labs came back negative for infection so we were discharged at 6:30pm. I guess the fever must have been some sort of reaction to anesthesia. I'm going to get a list of the meds that were given and try to figure out what was different this time. Brady's blood counts are coming back up, not normal yet, but no longer neutropenic. The results of HVA VMA were not in yet, so we will probably have to wait until Monday (remember those levels will tell us if the amount of cancer cells are decreasing). We have an appointment Monday with the oncologist that was supposed to be to go over results of the scans. Since we already did that in the hospital, I'm going to call Monday morning to see if we still need to come in. Our next goal is to get this tumor out, which means we need to get Sloan to return our calls and emails. That is an area for prayer!

I wanted to share a picture with you of our three monkeys (the 4th monkey was sleeping soundly in her swing). It warmed mommy's heart to see her four "babies" back where they all belong! Also I included a picture of Brady saying his prayers:)

Friday, March 6, 2009

Some more news

It's Matt reporting live from the hospital. I talked to the oncologist for quite a while earlier today. The conclusion is that even though the tumor did not shrink, there is a lot we don't know about the effects of chemo. The good news remains that all the studies on Brady's tumor are favorable. She said sometimes this type of tumor does not respond a whole lot to chemo because there is less aggressive cancer cell in the tumor. The fact that the catechomalamine levels in his urine went down indicates that there is less neuroblastoma. One really weird thing that this cancer can do in response to chemo is change from cancerous neuroblastoma cells to benign ganglioneuorma cells which are harmless. Of course all of this is speculation without another biopsy which probably wouldn't be until surgery. There is still a "finger" of neuroblastoma in the spine which isn't compressing the cord. We are still waiting to hear from Sloan Kettering. The oncologist has called and emailed them but hasn't heard back.

Brady continues to be amazing and sweet. He seems to be almost used to being in the hospital. Brady took a two hour nap this afternoon and contently played with playdoh on the mat in his room for most of the day. I was able to take him for a walk as long as he wore a mask. He cooperated without any problem (maybe it was the Micky Mouse on it). Brady absolutely loved the walk and kept me going for almost an hour. He loves to tell his daddy "fast fast" followed by his silly giggle. There is a lot of animals painted on the walls that Brady loves to talk about.

Brady's blood work today was good and bad. His overall white cell counts were up, but his neutrophil counts remained the same which puts him at high risk for infection. Hopefully we will get the urine results tomorrow.

Our sweet little boy fell asleep at his normal bedtime tonight (watching winnie the pooh) and slept right through his 8:30 vital sign check. Hopefully no one will bother him for the rest of the night, if they do I'll probably kick them out.

Thanks again to all of our prayer warriors.

Friday Morning Report

We didn't make it to a room until about 1:30am. We are not in the usual wing, so we aren't with the other cancer patients. Of course everything had to be repeated once we got here. You must know how important it is to get an accurate weight, height, and head circumference on a child at 1:30, especially when all of those had been done 3 times in the last two days. Momma bear was not happy!
Brady got some good sleep so I was happy.

The plan right now is to be here at least 48 hours (Friday and Saturday). He has to be without fever and infection throughout that time in order to go home. He continues to get antibiotics as well.

I'm hoping to speak with our oncologist today and get some more insight as to the MRI and CAT scan results. We need to make the most of our trip here for sure.

Matt is on his way up right now. We'll spend some time together and then I'll head home for the night.

Thursday, March 5, 2009


We are here for 2 days at least. Brady's counts are low and is at high risk for infection. We will not be able to have visitors during this time at the hospital, which makes us sad:( They won't know if he has an infection or not for a few days, but are doing antibiotics as a precaution. We should be in a room by midnight. The attending doctor mentioned the possibility of 5ths Disease (sounds way worse than it is) given his "slapped face" appearance.

Thanks for holding us up in prayer...

Calling our Prayer Warriors!

Well friends...not so good news tonight. Brady spiked a fever before dinner. It was hovering between 102-103 for a quite a while even with Tylenol. We called the oncologist and she said we needed to head to the ER. It is possible that Brady is neutropenic, so any infection is a big deal. We are here in the ER...got in right away since Brady is a cancer patient. He had blood drawn and we are waiting for results. His face is really flushed as well so the doctor thinks it could possibly be a reaction to the anesthesia. We are probably going to be moved upstairs to a room (private of course) and will be here overnight most likely.

I'm want to let you all know some disappointing news about the CT/MRI results as well. It looks as though the tumor in Brady's chest has not changed. It hasn't gotten bigger, but more disappointingly hasn't shrunk either. There is less swelling in the spinal area and the cord isn't compressed, but that could have been as a result of surgery, not chemo. The doctor wasn't completely discourged though because since his HVA and VMA levels did drop, that means the amount of neuroblastoma cells are fewer. So, it is possible that although the tumor didn't shrink, it could have "changed." Sometimes NB tumors will mature with chemo, which means they become benign, but don't shrink. There is no way to know if this is the case until we can get in there and biospy it. All the more reason that we need to get to Sloan. Our oncologist is emailing them yet again tomorrow, along with new scans.

I talked with God the whole way here. I told him of my disappointment, my broken heart. I told him how hard it is for us to leave our three healthy, happy children home living their normal life. I shared with him my anger that this cancer is still in my sweet Brady. I'm trusting him to give me that hope again that has sustained me for the last 1 1/2 months.

Please be praying:
For Brady's sweet spirit to continue being a blessing to all of us. He is amazing!
For the doctor's at Sloan to respond to us ASAP and make Brady a priority even though he isn't a Stage IV kid whom they deal with primarily.
For our parents and Eli, Cara, and Allie at home.
For God to heal my broken heart and restore my hope so that I can be strong for Brady.

A Rough Day

We were right on time for our 8:30 appt today. Of course there were major delays once we got there. Brady was scheduled for a CT, then MRI. The MRI people decided that since Brady had another scan first that they would put someone in the MRI in the meantime. Well, the CT people wouldn't start their scan until the MRI was open. SO, we didn't even start until 11:30. Brady couldn't have food or drink, so the poor kid hadn't eaten since 7:30 last night. Matt and I were livid that once again, we are left waiting just because someone messed up. Our nurses Sharon and Nancy were with us the whole time. They are SO FABULOUS! They work in the MRI department and were with us the day of his diagnosis. They really go out of their way to put a smile on your face, but at the same time get things done! When I was having a heated "discussion" with the MRI lady, Nancy and Sharon were in the background saying "Mmm Hmm, Yep, that's right" under their breath. Ha!

I went with Brady back into the CT room and was with him as he went under anesthesia. They used his Broviac and it was under within seconds of giving him the medication. By about 1pm he was back in the room with us. He was very sleepy at first and didn't want to wake up. When he finally did he was full of rage and inconsolable. I told the nurses that this was very unlike him, even the two times he has been under anesthesia weren't like that. They feel he had a reaction to Versed, a medication that he hasn't had before. Apparently this anesthesia team used this mediation to keep him sedated while being transferred from one test to another. Our nurses said that this med wasn't necessary and next time we should ask for a specific pediatric team. Who knew? Brady just thrashed and screamed all the way to the car and all the way home. He finally settled down as we got closer to the house. Poor sweetie...totally not himself.

He has settled down now and finally ate some cookies and pudding. We are hoping to hear from our oncologist tonight with some results. I'll update later either way.

Wednesday, March 4, 2009

Wacky Wednesday

Brady and I headed to Strong at 8:30 this morning for his 9:30 appointment. When we arrived to the clinic they drew his blood through his Broviac (no tears!) and then we had to wait an hour for it to come back. The clinic is a series of small rooms with glass doors (similar to an ER) staffed by nurses. They also had a playroom where we decided to hang out and wait for results. Brady had fun playing with the train table and tearing through a huge pile of books. Then two volunteers came in wearing "Better Day Buddies" tshirts. They are volunteers who come to the clinic to lead crafts and just try and make the kids smile. How fun! It happened to be "Wacky Wednesday" today. They gave us a Dr. Seuss book with that title and then we made wacky hats. I think I loved it more than Brady! This organization is all volunteer/donation led and I just kept thanking them for being there.

We headed back to our room to start the transfusion at 11am. They just hooked up one of his "tubies" to an IV pole with one bag of red blood cells. The transfusion took 2 1/2 hours. In that time we played, sang songs, watched Elmo, and ate cookies (Brady sternly refused the mac n cheese they offered him....NOOOOO!) At his usual nap time (1pm) Brady curled up on my lap and began biting his blankie as always. Within minutes he was out and stayed asleep for 1 1/2 hours. He couldn't feel my tears hitting his sweet little bald head as he slept. I just kept crying thinking about how proud I was of him. In those quiet moments I often think to myself, "How did we get here?" From our room I could see into two rooms nearby. In one room was a teenage girl with cancer who did not look well. She was so weak that she had to be in a wheelchair and it broke my heart to think of her being sick during such a fun time in her life. In another room there was a young couple who had a baby not more than 5 months old who was getting a transfusion. As I held my precious boy feeling sorry for myself, I thought about how everyone there has a story, a difficult one, but we are all in the same boat. We are all there, praying for miracles...

We were home by 3:30 and the afternoon/evening was very chaotic. Lots of whining and crying among all 4 Williams children. Matt and I are exhausted, as always, and trying to come up with a game plan for tomorrow. Our appointment got moved up to 8:30which means we leave here at 7:30. Although earlier, I'm glad to have it bumped up as Brady can't eat or drink before anesthesia. We won't get results before we leave, but hopefully will hear from the doctor in the evening.

Please join us in praying for:
-Those administering anesthesia...pray that Brady is safe and sound during both scans
-Brady's comfort and sense of security throughout the day.
-Strength for Matt and I as we sit and wait in the same waiting room that we were in when we got the devastating news of Brady's cancer. I'm not looking forward to going back there.

God bless all of you who continue to stand by us and pray for us!!!

Tuesday, March 3, 2009

Brady the Brave

I've never been so proud of my boy! So today we had the "dreaded bath", Broviac flush, and his GCSF shot. Brady hates his bath because we have to put his Broviac tubes into a sandwich bag, tape it to his chest, then lay him down with his head hanging over the sink to wash his hair. We can't get his Broviac site or his back surgery site wet. Then we sit him in two inches of water and attempt to clean him as best as we can. WELL!!! Today he went through the whole process without a tear. He and I just talked and I was able to talk him down as he became upset. Then I did his Broviac flush before I got him dressed. We talked about each thing I was doing, and he got to choose which tube I flushed first. Now he is getting so keen to things that he watches to make sure the bubbles from the syringe don't go past his caps. Still no crying! Then after dinner Grandma was all set to do his shot. Grandpa was holding him and I was in the other room. All of a sudden I hear "All done!" He never cried! This certainly isn't commonplace, but maybe he is starting to understand that most of his discomfort is short lived.

Brady and I will be at the hospital at 9:30 for his first ever transfusion. We will be there for 3-4 hours. Still racking my brain as to how to occupy him for that long. He isn't a big tv watcher...I guess I will rely on my arsenal of snacks!!! One of our followers asked about donating blood in Brady's honor...LOVE THAT IDEA! I actually have thought about organizing a blood drive in Brady's name sometime in the future. Blood transfusions are a common part of a cancer patient's treatment.

Still no word from Sloan about a potential appointment. I keep calling our oncologist, but she hasn't heard from them.

As far as physical therapy for Brady, we found out some great news today! Our county Early Intervention Program will pay for Brady's physical therapy even if we go to Rochester for it. We are looking into an outpatient clinic that focuses on children, they even have aquatic therapy. It will mean driving there 2-3 times a week, but we are totally willing to do that! Our insurance would have covered 30 visits, but with a $40 copay. To have this expense out of our mind is a huge blessing!

Please pray for our safe travel tomorrow. Please continue to pray for Brady's healing. Other parents of NB children have been on my mind lately too. There are SO many children suffering with this disease, many of whom have Stage IV with a much more bleak prognosis than Brady. Please say a prayer for those who are suffering far more than we are.

Monday, March 2, 2009

Brady needs a Transfusion

Brady had blood drawn today (like every Monday and Thursday). I called for results at about 4:30pm and everything looked okay except for his hematocrit (red blood cells) which is 23. That means he will need a blood transfusion. The NP is going to set it up for Wednesday in the outpatient clinic. It will involve some initial bloodwork, the transfusion, and then some additional test afterwards. I guess the process is 3-4 hours (sounds like fun with an almost-two-year-old!) We will be back in Rochester the next morning (Thursday) for his CT and MRI under general anesthesia. We haven't heard from the oncologist as to whether or not she has heard back from Sloan Kettering. I'm thinking next week might involve us just being home, then possibly NYC the week after? We'll see...

I can't say how difficult it is to live day by day like this. The funny thing is, we all live like this, we just don't know it! I'm a HUGE planner...I have a calendar that sits on the counter at all times, I live by it! Through this experience I have had to adjust to living just one day at a time. I don't know if I'll be home tomorrow, or in the hospital. I don't know if I'll be home next week, or in New York City. It is unnerving I guess...certainly a change of thinking for me. Aren't I glad I have my one constant...my hope and trust in God that is the same no matter what the day holds!

Sunday, March 1, 2009

Brady Video

Even though Brady sometimes isn't feeling his best, he can still be a very silly boy especially at bedtime. We wanted to share some footage of Brady standing in his crib and having fun! You'll notice how easily Brady pulls himself up on his crib. He had great difficulty doing this before surgery and was sometimes unable to. He is still probably a long way from walking, but these improvements are very encouraging to us. Sorry for the poor quality - long story.