Tuesday, May 5, 2009

Frustration and Fun

The good stuff first: I had a fun night out with my triplet mommy group in Rochester. We are a group of all triplet moms who meet once a month for dinner (usually lasting 3+ hours)! Lots of fun to just get out and gab with a bunch of girls!

The frustrating stuff: Still didn't hear back from Strong today, so I called them...again. The whole story is too long, but the short story is that our oncologist heard from Sloan a week ago after they discussed Brady at tumor board. No one from Sloan called me after tumor board, as they told me they would. My oncology team didn't call me either. I was frustrated and but at the same time I need to keep everyone on our side. Basically the tumor board recommended that Brady be followed with scans every three months. So, that is not anything we didn't already know. The frustrating part is that I've been waiting for someone to return my two phone calls in order to get the ball rolling to schedule his scans. We are hoping to have them done as close to the 18th as possible (6 weeks post op). My oncologist said she would start working on getting it scheduled. So we have been home for 4 weeks and really haven't gotten ANYWHERE!! It has become painfully obvious that Matt and I need to stay on top of EVERY aspect of Brady's care. No one else knows his whole treatment and surgical history, therefore things are constantly missed or not considered when making decisions. It is a sad reality, but more often than not we have to initiate the next step in his care.

So, I should be hearing soon from Strong regarding a scan date. We are going to do a CT of his chest and MRI of his thoracic spine. His urine and blood will also be collected. If anything looks suspicious, further tests will be done. I brought up the issue of getting his Broviac taken out. I think I mentioned that at this point it seems useless to keep it in any longer because he is no longer receiving chemotherapy or needing blood draws. Our doctor told us that once we get a scan date, we will also schedule a surgery date for Broviac removal soon after! Hooray! We are already finding things like sand from the sand box in his dressing and I can just imagine what else will find its way in there this summer!!!

Please keep us in your prayers as we continue the agonizing waiting game. Please pray for Brady's complete healing!!!
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  1. Hey Meg,

    Sorry you have to push everything so hard and initiate next steps. It's discouraging the professionals can't stay on top of everything like we'd all hope. Hang in there. You and Matt are doing a terrific job, and Brady is blessed to have you on his side. Praying for you guys!!


  2. ok, the triplet group sounds awesome...i need to get a group of middle aged mom's with bio and adopted kids and hot husbands...do you think there's one of those around? jk.

    praying for brady and you all...and praying for scans quick and on schedule...and good results!

  3. You have been through frustrating and emotionally draining times with both hospitals since Brady's surgery. You probably would have received a call if there was any bad news...but am very glad that you are keeping on top of things.
    It is so good that you have a triplet mom group! Lots of fun and shared ideas...
    Still praying!

  4. Hi! Glad you had a fabulous time on your mom's outing.

    It is so frustrating that you have to stay on top of everything this way. I know they are busy, but they should still call you back.


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