Day 52, The First Bite of the Whale

Everything is alright in the world . . .

That’s how it feels having Amber home. Although, truth be told, these first few days have been a bit difficult and exhausting in regards to helping her with her ongoing recovery; Matt and I filling some of the role of PCA, PT/OT, and nurse, while also trying to schedule upcoming appointments, trying to maintain a “normal” schedule with the other children — all of this while trying to “settle” into our new way of life.  It’s tough at times but totally worth it, to have her here with us, right here, right now.

Amber came home this past Thursday.  Before we were discharged we said our goodbyes, took pictures, and gave hugs to everyone we could that took special care of Amber.  The emotions were bittersweet.  Sweet because, well, everyone was.  CCMC took exceptional care of Amber, of us.  Bitter because of the fact that we were even in this situation in the first place.

After we were discharged, we had to head over to Hartford Hospital to have a special mask created for Amber’s upcoming radiation treatments.  Hartford Hospital is literally right next door to CCMC.  So as Amber, Matt, and I are walking (and wheeling) past the outer edge of CCMC where we usually hung out when we took Amber out for an hour or two, Matt and I joked, saying that at any moment, the security alarms were going to blare and security was going to come and grab us because we’ve gone too much past CCMC’s boundary!  However, there were no alarms nor security guards coming for us to take us back.  We were — ~~ FREE ~~ –!!!!

So, for that first bite of the whale . . .

We found the Radiation Oncology department and proceeded inside with Dr. Bertsch and an RN named Kara.  They took us into a room where there was a CT Scan and a few technicians (all women by the way so Matt was way outnumbered).  Dr. Bertsch and crew explained to us how they were going to make her mask;  a flat piece of plastic that is heated and molded to the face.  In order to do this, Amber had to lay down on the CT Scan table/bed, with her head lined up just so.  One of the technicians gave us a sample of the plastic that was heated up so that Amber (and us) knew what to expect.  And quite honestly, when she gave me my little piece, oh man was that sucker hot!  I’m thinking to myself, how is Amber going to be able to lay there with this hot piece of plastic molding her face?  Yikes!  Although it was alarming for the degree of heat of the plastic, I am very happy that the technician did this because I think it helped Amber.  She now knew what to expect.

So there’s Amber, lying flat on this table/bed, covered in a nice new silky soft blanket, with this hot piece of plastic molding to her face.  She did not, cry, she did not yell, she did not complain one bit, and all while being completely and perfectly still.  She remained still even more so when it was time for Matt and I to step in the back room so that she could have her CT Scan done.  Again, this little girl amazes me.  Every day, it’s something new.  When finished we got to see and keep the finished product, as it will be used every day for her radiation treatments, to make sure her head is in exactly the same position each time.  Furthermore, Amber received that special blanket I told you about earlier, 2 large Kit Kats, AND she got to pick out a Princess Waffle Maker and Activity Cup, with a beautiful handmade pink bag to put it all in!  Man oh man.

The next day, on Friday we did receive a call from Dr. Martin indicating that the CT Scan showed some excess fluid.  So, this coming Tuesday we are going to have another CT Scan done to see about the fluid levels, and take it from there.  Dr. Martin wants to make sure that everything is copacetic before the start of Radiation next week.

One last thing, I know I probably sound like a broken record but I have to just say how truly Blessed I am.  Tomorrow is Mother’s Day.  My Mother’s day wish came true.  I am spending my Mother’s day with Matt, Marie, Brianna, Ryan, and AMBER, altogether, in OUR home under ONE roof.  Oh!  And Rea of course too!  That’s pretty special right?  Well that’s not all.  Tomorrow night, also on Mother’s day, there is another prayer ceremony for Amber at our Church; St. Mary’s Church in Baltic at 7PM.  A prayer ceremony in Thanksgiving.  There is so much to give thanks for . . .