Thirty Days and Waiting

Good evening!   What a wonderful day to wake up and reminisce about yesterday's Wish day.  A special thank you again to Patti, Dawn and Cheryl for making our boy's dream a reality.   Today has been a good day thus far.  Otto has been up all day, watching videos and movies as well as taking walks to the Healing Garden.  Otto was even able to sit down with the Digital Art Therapist who helped him construct a video comprised of many of the pictures we took at the parade.  He had a wonderful time doing this and was proud of his accomplishment.   We are waiting to talk to Boston Children's in order to set up a time next week.  We are going to be meeting with a team of individuals who reviewed Otto's case and past history.  We are praying that God will lead them to a better approach to helping Otto through this difficult journey.    We were also notified today that Fox 61 will potentially being doing an exclusive on Otto in regard...

Happy Halloween!!! And a Happy Make A Wish Day!!!   Before we mention everything that happened today, we need to say thank you to an amazing crew. Patti and Dawn are our wish granters who took so much of their time to put this event together. Cheryl, head of the Make a Wish CT chapter, was instrumental in helping to put things in place. And who could forget the Make A Wish MA chapter, also helping to put things in place. And last, but not least, our amazing friends and family who came out this morning at 5:30am to welcome us, make us extra excited, and send us off in style. Without the love and support of our community, we would be no where. So much love to all of you who came out today!  It was remarkable!   Our day started at the crack of dawn. We got up, suited up in our Sox gear, and were out those doors heading to the elevators.  We cannot even fully describe the love and support standing outside the doors of the Children’s Hospital. Before the doors even ...

Good morning!   What a crazy last few days we have had!  Otto watched his favorite baseball team win the World Series.  The family was questioning if they should lose Game 5, so we could come back to Fenway for Game 6 to win it.  Otto, on the other hand, just wanted to see them win.  One of Otto's biggest surprises came when he started getting messages from some of the staff of the Red Sox team.  Texts encouraging him to continue his fight were greatly appreciated by all, especially Otto.  He even was able to talk to a relief pitcher who played for the Sox a few years ago.  What an amazing experience for him!  A big thank you to the Dadonna and Fellin families for coordinating this.  What a gift!   Speaking of gifts, we were very fortunate to have been able to hold a small gathering at the hospital the other day.  Otto really wanted to see the boys from his baseball travel team.  Many of these kids have been playing...

So many things have been happening since we last posted.  There have been many meetings, discussions, and realizations we have had. A few days ago, Otto started showing signs of bleeding.  The doctors have decided it could be one of two things.  It could be related to his infection in his intestines or it could be a sign of the fungal infection spreading.  After reviewing scans and speaking to the surgical team, the team feels this is related to the fungal infection.   The fungal infection is one that is extremely rare.  It is also one that is very difficult to treat.  We were hopeful that with a building ANC alongside the three antifungals, that Otto's body would be able to contain the fungus.  Instead, his body is showing signs of it spreading.  The team will send him for another scan towards the end of next week to see if there are any differences in size of the three masses on his liver.   We have also researche...

Hi everyone,   Just wanted to update you on all that has been going on the last few days.  It's been a couple of crazy ones.  Otto started back with having abdominal pain.  This means no eating and drinking for the next few days or so.  There was another CT scan along with an ultrasound that was conducted.  Both showed that there is a small hole within his intestinal wall, which means he is definite no food/drink until the gut heals.  We aren't sure how long this will be going on.  All meds will be through the IV, including a nutritional bag which will meet his daily calorie and nutrient needs. There have also been some signs of bleeding.  Although we again met with the surgical team, all test results look the way they should.  There is no need for surgery at this time, but he will continue to need platelets and red blood cells.    Please continue to pray for our guy.  Mark, Leigh, Otto, Tess and Lulu 

Good evening!   What a day it has been.  The girls were at a swim meet in the morning with mom (in which Tess did a great job giving it her all and shaving a few seconds off her personal bests), while Otto and Dad were at Yale.  Although Otto had a bit of a rough night, he made up for it today.   Otto's ANC was at 1500 this morning.  We were all happy about this!  His platelets and red blood cells were pretty low again and a transfusion was needed for both.  His blood pressure continues to be monitored as well as the fluid build up pressing against his lung.    With a little cat nap this morning, Otto woke up with energy a blazing!  He was up and out of bed, taking walks, playing golf on his newly constructed putting course (thank you Ian!), living life with his pals.  It was like Otto from weeks ago was back.  We were all smiles listening to him joke around and laugh.  Even watching him pick up his phone and play vi...

Otto had a great day today!  His ANC was up to 1200 and he was feeling it. The morning was filled with a great walk to the Healing Garden with a visit from a neighbor. Jared- he had a wonderful time hanging my with you! We also were visited by people who are so much like family to us, the Sinusas family. A big thanks to  Pat and  Keith for the visit. Otto loved the sweatshirt from London! We were so happy to see Otto in good spirits. We are hopeful that the ANC level will continue to grow. Thanks again to everyone helping us to make things happy and positive. We love our Yale nurses and staff!! Thanks to all of you who continue to pray and send positive thoughts!! So much love and positivity! Mark, Leigh, Otto, Tess and Lulu