Our First MPS Conference!

It was a very bittersweet week for us.  With the trial ending, I had to take Little Buddy up to Minnesota for a few blood labs to be drawn to close out the study.  It was the first time in over two years that we wouldn't be there for an infusion.  Although the drug company doesn't believe that SBC-103 was helping my son "enough", we know it was.  Anything is enough when your child has a terminal disease with no treatment.  Any benefit is enough benefit.  And to be there and not be able to get the drug that was helping him...well, I can't put into words the heartbreak and hopelessness that I felt.

Last hospital trip.  I want to throw up.  

The only good thing about this week is the fact that the National MPS Society's annual family conference is also in Minnesota this week.  Blessed to be able to spend time with our extended Sanfilippo family, the only people who truly get the devastation that we currently feel.  And Daddy and Little Sweetie came up to join us for it to!  

The family is together again!

First stop on our Minnesota farewell tour, taking Daddy and Little Sweetie to Minnehaha Falls.  Little Buddy loves waterfalls and it's always a treat to see this one when we are in town.

     

Little Sister is so happy to be in Minnesota with her Big Brother!

The two boys resting up before going to check in at the conference.

The first thing I have to admit about the conference is that I didn't take nearly enough pictures!  Not even close.  Too busy meeting and talking to other families.  What a wonderful experience.

What great pictures of L, Little Buddy, and N!  So glad we got to meet these families.

The only thing better than a picture of these super Sanfilippo boys together?  Another picture including their super sisters with them!  

Worn out from the first day, but Momma is excited for all of the cuddles!  Ready for Day 2!

Cure Sanfilippo Foundation is representing!

The M family was there!  So glad to see them again! 

Little Sweetie was even more excited to see the M family and her buddy again!  They had such fun the entire conference!

     

These two are DONE!  

Day 3 consisted of a 5k race, a trip to the Sculpture Gardens, and a formal dinner.  Can't believe it was our last full day in Minneapolis.

Walking over the bridge to the race course.  I'm going to miss this place.

     

Second in my age group with my friend, D, right behind me!

Post-race family picture!

And then we FINALLY got to go to the Sculpture Garden!  Little Buddy has been obsessed with the picture of the spoon and cherry sculpture in our hotel for over 2 years.  We have wanted to go, but the  garden has been under renovation for nearly the entire time we have been in the trial.  Glad we got to check this item off our To Do list as a family.

     

The famous Spoon and Cherry!

     

Fun interactive sculpture!

     

A few of our favorites.

Glad that Little Buddy got to get out and walk around in the fresh air for a bit.  He's seemed very tired recently.  We'r hoping it's just the excitement of the conference and being off schedule.

Ready for the banquet!

     

More fun with the M family!

Sanfilippo Moms.  So glad to have these ladies in my life!

We're ridiculous when we're together.  And it's awesome.

     

Guess who does NOT want to leave Minneapolis?  You and me both, Little Sister.  Her face pretty much sums up my feelings about the end of the trial.

The last time we'll walk these hallways.

When you come somewhere regularly for 2 years, you make friends that become like family.  Our nurses, our rental car guys, our Chipotle workers, and especially our hotel staff.  So hard to say goodbye to them!  We were blessed by them and how they made us feel at home every visit.

And just when you think you are cried out, your cookie guy at the airport gives you a goodbye present.  We were truly blessed by everyone who loved on our family these past 2 years.

I'm still numb as I internalize the reality of this week.  While we were so glad that we could be with other families as we enter this new phase of Little Buddy's life, we are still just broken to know that he will no longer get any treatment.  We will research for other options and compassionate care for him but the reality is that things have changed and will never be the same again.  Little Buddy is dying and now he is receiving no treatment.  We have to find our new normal and focus on our family and our time together more than ever.  Because we don't know what the future holds or how much time we'll have together.

With sadness,

LSM

Little Sweetie's Momma