Wednesday, July 1, 2009

Familiar Territory

As of this morning I still hadn't heard back from the oncologist. Allie had her follow up appointment at 1pm, so I knew if they hadn't called by the time we got back, I would call them again. Allie's ears look better, but there is still fluid in both. She has to do 6 extra days of antibiotics to hopefully clear them up once and for all. We drove home from Rochester in some heavy rain, but it was sunny skies back home. Weird weather lately...

By 4pm I decided to call again. I spoke to the same nurse and was disappointed to find out that I can't directly call the nurse practitioner who works with our oncologist. You have to call an office, speak to an in-take person, who then relays the message to a nurse, who then emails your oncologist. Oh my...not liking the new system. I got a call back and the nurse told me that our oncologist wants to scan Brady in July rather than August. If you remember our last meeting with her was when she recommended a 3 month scan schedule. After that meeting, we sent the scans to Sloan and they recommended a 6 month scan schedule.

So, we are back in that familiar territory where we have to decide what to do. I told the nurse at Strong to hold off on making the appointment there. Matt and I emailed Sloan and asked if it would be possible to have a scan done there in July or August rather than wait until November. We want to go there for several reasons, but mostly because they do not intubate, they use much "easier" anesthesia, and their radiologists read NB scans every day. So we are waiting to hear back from them.

And Brady's tummy...Matt noticed that in the mornings it almost seems back to normal. So perhaps it is his tummy is very full after meals? His left lower rib does seem to protude more than the other, perhaps this is because the surgery on the other side changed his anatomy in some way? I was a bit perplexed that the oncologist here didn't want to see us before doing a scan. I asked the nurse flat out if I could get an appointment if I continued to be concerned in a few days. She said that of course they would see us, but reminded me that in every other way he is doing great, so try not to worry too much.

So friends, there you have it. I hope you are still reading after all the mumbo jumbo. If you have been with us a while you know that Brady's care has never been clear cut. BUT, the same God that was with us during surgery, during chemo, during our trip to NYC, is with us during this time. He is bringing me the strength to keep going even as I live with this nagging fear, and to keep pressing on and advocating for Brady even though I don't know what the best choices are. Just where would I be without His assurance?

Don't forget to check out our Alex's Lemonade Stand page to find out what's happening!


  1. How frustrating. Just a stranger keeping good thoughts. Keep the faith.

  2. You are doing the right thing. Prayers are with you all.

  3. I find myself praying w/o ceasing in the oddest moments such as: sweeping the floor, putting my make up on, showering, driving down the road, pushing my three year old on the swing, walking into the house w/ a load of groceries in my arms all while watching the clouds floating by...and i think to myself...why Brady...why your family...and how did mine escape it??? why all the other little boys and girls innocent as they are??

    There are definately more people than me praying like this so embrace tonight and hear the words that literally every second one of us is mopping, doing laundry, driving, fixing supper etc...prayers are being sent up for Brady and your whole family! There is never a moment that escapes w/o a prayer:)

    We send our heart felt prayers to you, may you rest in His peace as you sleep, the peace that surpasses all understanding.


  4. It must be really hard dealing with appointments and doctors and nurses and messages on a regular basis... you are doing a great job for Brady and he's lucky to have you as a mommy:)

  5. Hi, Megan~
    Trust yourself. Keep pushing. It IS important. Time is of the essence when your child has neuroblastoma. From now on, you have to treat everything like 'something' until you find out it is 'nothing.'

    In prayer,
    Kelly McCord

  6. I know it is hard to keep going to Sloan, but they seem like the better place to take your concerns to. Trust your instincts God is working through you. Stay strong and dilegent. It often seems like the medical community will not listen until you push and make your situation top on their list(however you need to do that).


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