Thursday, January 30, 2014


Today was the day we were dreading.  The day that made us anxious.  We were afraid and uncertain on the drive to Boston.  The ride in was quiet, with a little nervous talk.   We left early enough so we could stop at Toy R Us for a special surprise.  Just a little something to smooth over our transition into Children's and to MRI.  He voiced his fears as I held him in the lobby and waited for the others to come in.  I held him and promised it was going to be okay.  That he was only having some pictures taken.  We walked together to the elevators and up we went to floor #2.  As we took the corner to MRI, I could feel my legs getting weak.  I could feel my body putting on the brakes.  I didn't want to be in this hallway again. It's the place we heard the "news".  The hallway I remember seeing another mother crying in.  The same hallway we cried in.  The one I wandered around tying to call family members.  I could feel the tension as we walked into the waiting room.  It was the place we sat, talked and joked around before hearing the "news".  Here we were again,  just this time we were prepared to hear news about Danny's tumor.   

Shortly after filling out Danny's papers we were ushered out of the room to the prep room.  Carley answered questions while Danny and I played with the TV.  It took a while to get him registered and prepped.  Danny started to cry when he saw Carley in the hospital scrubs.  He told her that he wanted to go home and that he didn't like her outfit.  She amazes me with her ability calm him while she is dying inside.  I watched her rock him, sing to him and reassure him that he was going to be okay.  That she would be right there for him the entire time.  I wanted to cry for her.

The anesthesiologist arrived right at 12 o'clock and whisked them off to the MRI room.  I waited patiently for her to return so we could return to the waiting room to our parents and Dan.  For the next hour, we had lunch and sat in the waiting room.  The nurse called Dan and Carley back to sit with Danny while he slept.  I sat with my parents and talked.  The second I picked up my phone to show them some pictures, Carley arrived.  She looked funny,  with a slight smirk on her face and asked me to take a walk with her.  As we turned the corner into the the hallway she looked at me and told me the best news....The news we needed to hear...The news that we have been praying for....The tumor has shrunk significantly!!  Music to my ears.  I burst in to tears and hugged her as tight as I could.  I whispered into her ear....Our prayers are being answered.  We told our parents the good news.  My mom went to sit with Danny while he slept and I sat with my dad and gave him a big hug.  It was the best feeling to sit in the waiting room and know he is fighting and winning his battle.

He slept for a long time after his MRI.  Once he woke up, we packed up our stuff and went home.  The car ride was much livelier.  A sense of relief filled the air.

Thank you for all of your continued support and prayers!  Please keep them coming. They are being answered!!

Wednesday, January 29, 2014

Ups and Downs...

It's been a long time since I sat down to write.  We've had such a wonderful month since the last day of Radiation on Dec. 26th.  We've had many family gatherings, celebrated holidays, snowstorms, birthdays and followed Danny on his Make a Wish Trip to Disney World.  He seems to be doing well.  You'd never know he was in a battle against DIPG.  He's energetic, funny, inspiring, positive and happy.

It's hard to imagine three months have past, maybe its because of the holidays.  My courageous nephew has completed 6.5 weeks of radiation, he's gone on a "Make a Wish" trip, and is now gearing up for an MRI on Thursday.

After the holidays, we looked forward to our trip Florida. Carley, Dan, Danny and Matthew left on January 11th.  They had a few days alone and enjoyed Sea World and Universal Studios.  On January 13th we surprised them at Universal Studios...We knew they were going to be in the parade because an extended family member that works for Universal set it up for them.  She also set up our surprise visit.  They were in shock when they saw us standing on the sidewalk.  For the next couple of days we enjoyed all of the Disney Parks.  The kids had a blast going on rides, meeting the characters and being together.  We had an amazing time and non of us wanted the fun to end.  We knew coming home would bring us back to reality.  Chemotherapy and Clinic took place on the following Monday.  During the clinic appointment, the doctor told Carley it was time to schedule the follow up MRI.  We know in our hearts Danny is doing fantastic, but also know that things may not be at as they seem.  We are positive and hopeful yet we are all on edge, worried about the results.  I know how I'm feeling, I can't imagine how everyone else is feeling.

Please keep us in your thoughts and prayers this week as we prepare for Danny's MRI on Thursday. 

Here is a video of our trip:)

Saturday, January 11, 2014

Making a Wish!

Danny and family were picked up early this morning by a limo and taken in to Logan Airport.  Their Pilot met them at the gate and gave them a tour of the cockpit before take off.  They have arrived at their hotel and are already swimming in the pool!  I will update more and will add some photos once I arrive on Monday.  Big things to come for my warrior nephew!  Stay tuned.

Wednesday, January 8, 2014

Doing great! - Quick update

I am way behind on blogging about Danny!  The holidays were busy with family events, outings and the big snow storm.  We are all so happy to be back in a routine! 

Danny had an amazing Christmas with all of his cousins. Santa was good to him this year!  He finished Radiation on Dec. 26th.  After Radiation, he met most of his cousins in Boston for lunch followed by a special surprise....Disney On Ice.  He loved it!  The best part of being there was seeing him have fun with his cousins.  The younger group of kids sat in front of me (Danny, Matthew, Mae and Abby).  They are such characters.  Every time a vendor would walk by, all four hands would go in the air in hopes the vendor would bring over whatever it might be.  Matthew even yelled out a couple times telling them to come over to us.  They enjoyed snow cones, popcorn and cotton candy.

Danny is doing great.  He had a clinic and chemo appointment this past Monday and the doctors commented on how wonderful he looks. He is running, jumping, smiling and doing all the things a 5 year old should be doing.

I have tons of pictures to post from the holidays and will get that done by the end of this week.  I need my camera ready for next week because.....Danny is going on his Make a Wish trip to DISNEY WORLD:)  He leaves on Saturday for a week of fun....and most of his cousins and family members will be there with him! 

I'll be in touch soon with some pictures and updates from Disney World!