Saturday, October 23, 2010

Random Update on Things

Sometimes when I sit down to write I just have a few unrelated things on my mind with no real flow to them. So here you go!

Matt and I went to a wedding tonight. Well, actually we went to a wedding reception tonight. We just couldn’t figure out how to get everything done this weekend and be able to go to the ceremony and reception. Still, we had a great time and got to get all dressed up.  Not too shabby for two old married people with 4 kids:)


The kids have all been sick this week. I’ve wiped more noses this week than ever before! Poor Allie had the worst of it. I think we are on the upswing now.

We are still trying to process all that has happened with Brady’s scans last week. I took him for a follow up appointment with the oncologist on Thursday. He is pretty confident that the change in the measurement of the “spot” on Brady’s spine is due to the position he was laying. He went back and compared this scan to some that were done last year, just to make sure that this change hadn’t started long ago. He couldn’t see a real difference from then to now.

When we left Sloan after Brady’s surgery in April 2009, we had to make a decision whether or not we would return there for our follow up care. If it weren’t for the distance, cost, and disruption to our family life, we would be there for all of Brady’s follow up care. However, given that Brady’s surgery was so successful, the doctors there felt we could use our local hospital for follow up care.  We kind of made an agreement between us though that if anything at all every happened as far as a relapse or something didn’t look right, then we would return to Sloan immediately.

This has nothing to do with any sort of distrust with our home hospital or doctor. We absolutely trust our doctor and think he is wonderful.  The truth is though, Neuroblastoma is a rare cancer. There is no way for our oncologist to be a specialist in Neuroblastoma when he only see a few cases a year. There is a team of oncologists at Sloan who deal only with Neuroblastoma. The radiologists they work with read scans every day that are just of Neuroblastoma tumors. The surgeon that did Brady’s surgery operates on a handful of children with Neuroblastoma every week. The reason we went to Sloan for Brady’s surgery is because they are considered by many the best in the world.

So now we are in a situation where we have this unusual scan. We aren’t highly alarmed at all anymore. The urine results came back normal meaning that Neuroblastoma is not raging in his body. However we have read about kids where the urine test has not been an accurate predictor of active NB, in other words, there are rare cases of false negatives. We are trying to decide if it is wise to send the scans to Sloan for their radiologists and Dr. LaQuaglia (Brady’s surgeon) to review. Perhaps they are used to seeing this sort of thing with this particular surgery.

Certainly we are leaning towards being cautious and thorough. I just want to be able to consult Sloan and maintain a great relationship with our doctor here.

In other news, and on a much lighter note, the kids and I got outside this morning for quite a long time. We just walked around the house and yard exploring and talking about all the changes that fall brings. They had fun squishing crab apples that had fallen off of our neighbors tree. They loved taking rocks from our landscape and piling them up on the stone wall that flanks the edge of our property. And then there was the raking…

I raked and they kind of unraked! They had a ball “helping” me pile the leaves up and get them in the big bucket! The best part of all was raking up the maple leaves and then jumping, rolling, and hiding in them.


I had to include this next one. Here is Eli perfecting his “outdoor Kleenex” move! Ewwww….


And this is so typical of my boys. I had them all posed to take a group shot, and all of a sudden they were crawling to look at the moth that landed a few feet away. “Look Bwady! Its an amazing butterfly!”



Can you believe that my baby will be 2 in just 2 weeks!!! Sigh…



  1. Cute pics of the kids having fun outside!

    If you have the option to send the results to Sloan, I would. I would be like you in this case, cautious and thorough. I bet your home doctor would understand your decision. And if it gives you the peace of mind you need, go for it!


  2. I agree with Beth, Megan. Brady is now in the Sloan-Kettering system, so don't be afraid to ask his doctor there for an opinion.
    Love and prayers,

  3. Hi Megan

    Great pic of you and Matt. What a handsome couple you are.

    As for the scans, I would send them. MSKCC are the experts. And this is the life of your precious Brady. Yes it may be absolutely nothing BUT you need to get as many opinions as you need to make you comfortable that it really is an inaccurate scan.

    You are Brady's advocate throughout all of this. You have done a terrific job with his care throughout diagnosis, treatment, therapy and follow up to date. Trust your instinct. And if that means getting a second opinion, do it. It is all about what is the right thing for Brady.

    M x


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