Monday, June 1, 2015

The Winds of Change

I told you so...the winds of change are coming.  They arrived today. Out of the blue.

I got a call this morning that our favorite doctor of all time, in all the world is leaving.  Dr. Shimamura from Seattle Children's is packing up her practice and relocating to Harvard in Boston.

What does this mean for us?  It's complicated and difficult at best.

Our whole team is being dismantled.  As of July we have no one but our local docs who know nothing.  I like them but they don't make the effort to learn about the disease my children have.  Dr. Shimamura was and expert in both Shwachmand Diamond and Dyskeratosis Congenita.  We were clearly led to her.  Now, I don't know what we are going to do. I was hoping for bone marrow biopsies to be done in Seattle in August but she is leaving in July.  There's not enough time to get it all set up.  We were waiting for Spencer to get home so we could do it all together.

There are only 4 DC specialists that I know of in North America.  One is in Toronto, now 2 in Boston and one in Maryland at the National Institute of Health.  None of these clinics is in our insurance network.  AND...as if I have money to travel to any of these places when we need care.

Ironically, I got a call shortly after that from National Institute of Health. I have been working with them since 2004.  Since they found out last May about the kids DC mutation, they have been pursuing me for information.  I have been re-engaging with them.  The nurse was calling this morning to check in on us and see if there were any new developments.

I reported that the kids were recently diagnosed with Pulmonary AVM.  She was taken aback.  NIH is about to release a paper stating that AVM's are in fact a part of DC.   With my kids, they now have three handfuls of kids with DC and AVM's.   Interesting.

The weird part is, they want to start testing me for DC.  I have no desire to know if I have more than just carrier symptoms. I told them 'NO!'.  I think she was surprised but I'm not strong like my kids.  I have enough going on, I don't want that diagnosis looming over my head.  I don't know, I think we have enough going on without throwing my issues into the mix.

I explained our dilemma to NIH and they are going to try to find us resources in Salt Lake or Boise.  Until then, we are just going to stay the course and leave it in God's hands.

The rough part is, I was counting on future transplants to happen in Seattle.  We'd be closer to family for support and they have a special regimen they are testing on DC patients.  I think we have to go to transplant where the best docs are and that is feeling more like Boston.

I don't know what God is doing with us. I didn't expect this but I'm willing to be patient and wait for an answer to come.  It just caught me so off guard. In some ways, it's as intriguing as it is discouraging.  We'll have to wait and see what transpires next.

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