Thirty Days and Waiting

Good morning everyone! The first day of chemo and radiation are over.  They both went somewhat smoothly.  The plan is to continue chemo today, where as radiation will begin again on Monday.  Chemo is a course of 5 days, and radiation is 10. Otto has been fighting a cough over the last few days.  Yesterday we were told it was bronchitis, however, now there is a question about if it could be pneumonia as well.  Either way, they are causing him to have a build up of phlegm resulting in coughing attacks.  The constant coughing is also leading to some more pain in his back and rib cage.  This caused us to have a really rough night last night.  So, now we are adding in some more meds in order to control all of it. Thanks again for all the love and support! Please continue to say prayers for our boy who is fighting so hard! Mark, Leigh, Otto, Tess and Lulu

Happy Thanksgiving, everyone!  We are hoping that you all were able to get some good, quality time with those whom you love. That, and have a delicious meal!  ;)  Otto was so happy to be out of the hospital, with most of our Connecticut family. We all gathered at Grandads house and had a delightful dinner along with some amazing desserts!  Our time together was lovely. Today, we are switching gears. We are back at Yale and are all set in an inpatient room. We cannot get over all the love and support from our team of nurses and friends from a child Life  who decorated his room. It is so special! Right now, we have a few things going on. Two were expected - radiation and chemo. However, while checking in, we we’re explaining to the docs that Otto has had a nasty cough over the last few days. X rays confirmed they believe it’s bronchitis. Poor kiddo even started with a fever once we checked in. Blood cultures were drawn just to confirm that it’s not bacterial, ...

A good afternoon to you all!  What an eventful last few days we have had. Otto is doing well being home. Home is definitely the best medicine!!  We are currently at Clinic. Numbers looked ok and we are just waiting for some platelets to arrive so we can get a transfusion. Sunday evening, we gathered at Julio’s in Southbury, where our friends, the Springers, along with their staff, served the finest food to an amazing group of people. The Springers, alongside the Nagys, Lowells, Mahoneys, Velkys and Macioleks, spearheaded the Otto Strong fundraiser on behalf of our baseball family. A special thank you to them as well as the other members of our baseball family who helped with this event. It was beautifully put together and ran so smoothly! That evening was one filled with love and positive light. We couldn’t believe how many people were able to attend. We also caught wind that there were many others who wanted to be there, but could not due to the event being sold out. No m...

Hi everyone! We are HOME!  Otto is home and he is loving life!!  We were able to get out of the hospital and our plan is to stay out til the Friday after Thanksgiving.  A big thank you to the docs and nurses who helped make this happen. Otto has had some nice visits with friends and family.  We also currently have some family up for tonight's dinner.  A HUGE thank you to all who are able to come in support of our family.  Another HUGE thank you to all of our baseball family that came together to make this happen. I'm keeping it short and sweet today! Sending so much love, Mark, Leigh, Otto, Tess and Lulu

Good afternoon!   Otto has continued to be well over the last few days.  We have been given the clearance to leave the hospital on Tuesday.  We are hoping for a morning discharge, so we can get home and meet with the home heath crew.  The home health crew will then guide us in our administration of certain IV meds that will be continued to be given at home.    We are really looking forward to being at home and hanging out as a family.  We have discussed staying out of the hospital until after Thanksgiving.  It is then we will be readmitted for another round of chemo.  As stated before, this is a low dose chemo and we hope for the cutis to be contained or reduced.   Hoping you all are doing well.  Thank you to all who have sent gift cards for gas and food.  They are very useful in our travels back and forth.  Thank you as well to all who have helped with rides, visits, etc.  We couldn't do half of the things we a...

A good morning to you all! Otto's last two days have been great ones.  He's been enjoying seeing visitors and hanging out.  He's also still insisting on watching Marvel movies!  A big thank you to the Murphy family for supplying us with some of those.  It makes the rainy days go by faster, for sure! We had a brief discussion with Boston Children's the other day.  After speaking to an oncologist there, along with our primary oncologist at Yale, we have decided to put some things into play.  The first part of our plan involves time at home.  Otto is now stable - no signs of internal bleeding, no fever, no upset stomach.  It looks like the food we have been slowly incorporating back into his diet, along with certain meds, are helping him to become stronger on a daily basis.  The plan is to come home possibly on Tuesday and be at home through Thanksgiving.  After Thanksgiving is over, we are scheduled to come back to Yale for the next pa...

Hello there!   The last three days have been good ones for Otto.  He continues to be stronger and is showing no more signs of internal bleeding.  Things have seemed to have settled for now.  He has been on multiple walks and even stayed out in the healing garden for over an hour the other day!  Of course, he enjoyed playing Monopoly Deal with one of the wonderful volunteers.                                                     Otto has been allowed to start back with solid foods.  We are sticking to one new item a day from a list of easily digestible foods.  So far, so good!  He continues to drink bone broth, which we feel has been very helpful to his healing process.   Today, we were asked if we wanted to take portraits through the Circle of Care organization.  Apparently, they do this once a y...