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!

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!

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:)