Skip to main content

Posts

Sunday and Monday, November 11th and 12th

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 are able to without the support of family, friends and the community.

W…
Recent posts

Friday and Saturday, November 9th and 10th

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 part of the plan.

One thing we have me…

Tuesday - Thursday, November 6th - 8th

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 year and often ask to use them in decorating the hallway of 7-3.  We aren't sure if we will be up on the wall, however, we had a fun time participating!  Glamour shots at its finest!!




  Thank you to all who have visited this past week.  Ot…

Sunday and Monday, November 4th and 5th

Good evening, all!

  Otto has had two nice days in a row.  He's shown more energy and is taking walks, chatting it up with nurses and enjoying hanging out.  We have also had a few visitors over the last few days.  That has also been nice.

  We heard back from Boston and we will be having a phone conference with one of their oncologists that have reviewed his records.  Although our doctor has been in contact with the one in Boston along with warning us that we will most likely hear the same diagnosis and treatment protocol from her, we still need to talk to this lady.  We just need to know if there are other alternatives to the path we are currently on.




  We do say it often, but it bears repeating.  Thank you to each and every one of you who find the time to send love, prayers and positive thoughts our way.  We really do find it helpful, more so Otto.  That's part of where we feel he finds his strength to fight.  He has so many people in his corner!!

Sending you all so much lov…

Friday and Saturday, November 2nd and 3rd

The last two days have been somewhat stressful at times.  Thursday evening into Friday morning, Otto woke up, sick to his stomach.  After getting sick, we realized that he was starting to internally bleed.  Thankfully, the doctors were able to give some specific meds that helped with nausea as well as clotting.  Unfortunately, the fungal infection grows by attaching itself to blood vessels.  They tend to grow in clusters.  At times, the clusters will burst, resulting in loss of blood. 

In addition to internally bleeding, we have also realized that his leukemia cutis is back.  His spots are small, but they are there.  So now, we are dealing with a fungal infection and leukemia.  We still plan on talking to Boston Children's this coming week. 

Luckily, Otto was able to recover from it.  The doctors and nurses are amazed by how strong his body is.  Today was a better day.  He was able to get up, walk around, take a trip or two to the Healing Garden.  It was also a movie day for us as…

Thursday, November 1st

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 regards to his recent Make A Wish.  I will keep you…

Wednesday, October 31st

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 opened, all you could he…