Wednesday, April 22, 2009

There and Home Again in 25 hours

Home again.

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

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

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

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

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

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


  1. Welcome Home! My head is swimming from all of your information. I can't even imagine how you digested all of it and then wrote in the blog.

    This day behind you and now you will celebrate all weekend!

    Take a deep breath and enjoy the celebration this weekend,
    Love, Deb R.

  2. I am so glad you are all home safe! I stayed up just so I could hear about your adventure. As always very informative. Thanks for sharing. Love you lots!!!!

  3. Yeh, so glad things went well. Collin and i came home from church tonight and heard an airplane and wondered if we were hearing Brady flying!! He also didn't like that the sky was too dark for you guys and no light from the moon. I said they were too sleepy to shine tonight, in which he replied we needed to get them BATTERIES!!!lol how precious they are...get rest and have a blast w/ the party woo hoo!

  4. Thanks for the update! Still praying! Excited to hear about the party!

  5. I've been so anxious to hear the news update! Thanks so much for updating so late, even with your long day!

    It sounds like you have a lot of information to think on, and I totally "get" your feelings about follow-ups at Strong, and if need be, at Sloan. You deserve to have the best possible medical care for your sweet boy, as well as feel like he is more than just another patient. He's your child and you are his best advocate.

    Brady's been on my mind so much lately, and I will continue to pray for him.

  6. You must be absolutely exhausted after packing all of that into one day. Try to take a little time to rest. xx

  7. I would definitely go with the oncologists advice. So glad you can somewhat get back to normal finally. Brady is such a joy to read about.

  8. Glad you are home!!! Enjoy the Birthday Bash!!! Have a wonderful weekend...God seems
    to be smiling with the weather report!!!! Janet Bates

  9. Glad you are home! Lots of info to sort through. It's terrible when they make you feel like a number.

    You have a fabulous birthday bash!! The weather is going to be beautiful this weekend!!

  10. My people are destroyed for their lack of knowledge, Hosea 4:6.

    If anything I have learned with Lindsay's condition, is that God can give us knowledge to many of these matters, which helps us better serve our sick loved ones.

    Believe this was God's will, for it to go the way He wanted, you consulted Him, and He directed. Our God shall not fail us, He knows the number of hairs on your head, and He surely knows Brady's condition.

    We will pray that God's peace will abide on you guys, and that His mighty hand will allow the healing process to take place in Brady for now and forever!

  11. Hey Meg,

    Quite a whirlwind day! Flying corporate sounds AWESOME. So what DID you all wear? ;o) Glad you had that opporutnity--sounds like it eliminated some additional unnecessary travel stress for the day.

    Good to hear to met with the doctors and have more information and a direction for moving forward. Keep on truckin'. Enjoy the weekend!! :o)


  12. So happy to hear that your travels went well and that you are home!

    You guys are such loving parents and strong advocates for your little Brady!!

    I wouldn't like the feeling of "little fish, big pond" either! Certainly not when you are talking about the health of one of your children!!

    God will lead in you in the right direction, I have faith of that!

    Have a wonderful weekend!! What a busy and exciting few days you guys are going to have!!

  13. Wow! So much information to digest! How you were able to retain it all is amazing. I am glad that everything went as well as it did, and that you are all home safe and sound. We continue to lift you up in prayer daily, God has great things in store for you all. Have a great weekend. Happy "3" Triplets, Eli, Cara and Brady. Enjoy you party!!


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