Skip to main content

Saturday, June 30th

Hello All,

What a fun day yesterday!  We started off by being greeted at rounds by our super heroes, the nurses, doctors and interns of Yale Hem/Oc!  We went over counts and things continue to look good.  He did have some blood platelets transfused Friday.  He continues to have some minor issues with his eyes being sensitive, but a little saline and other drops help.



We had a wonderful visit from one of the kiddos from baseball.  We were given an amazing poster designed by a great friend that was covered with messages from the PYB team.  Three walls are covered now (and I think we may be in the lead)!


Later in the afternoon, Hero Up day came and it was a hit! We went to the Hole in the Wall Gang gathering in the activity room where we drew Super Heroes (they had no clue that was our theme night btw), that we later used to decorate with.  Afterwards, we were joined by friends and had some dinner.  We then played games.  We even got the nurses to play along!  Otto had a great time and enjoyed it all.  We were short a few people, and missed them terribly!!

 

 
 


Friday night, the girls came home to a finished deck.  The fantastic and incredible dads from PYB stopped by to finish up some boards, put the railings up and complete the pool security screen.  A special thank you to Rich, Brian, Jimmy, Mark, Alex, Dave and Matt.  You have helped us so much more than you know!  xoxo




As for Saturday, we again, had some great visitors show up to say hello.  Those friendly faces means so much to all of us.  The day has gone well and everyone enjoyed the day.

As always, we are super appreciative of the support, gifts and activities that everyone is sending our way. They all keep our kids busy and happy.

All our love!

Mark, Leigh, Otto, Tess and Lu

Comments

  1. UnknownJuly 1, 2018 at 3:28 AM

    Thank you for providing this window that allows so many to stay connected to you, your family and most importantly to Otto during this challenging time. I check each day to see how things are going and am so pleased at the positive direction of Otto’s treatment! Of course, I’m not surprised by your ability to keep conjuring up ways to turn lemons into to lemonade! Your Friday theme days are brilliant. Can’t imagine that Yale has ever seen the magic of Mrs. Fun’s positivity before. Sending healing hugs along with thoughts and prayers to Otto and your beautiful family. Stay strong! You got this! ❤️ Joan Benson

    ReplyDelete
    Replies
    1. funderbloggerJuly 1, 2018 at 4:57 AM

      Thanks so much Joan! Our oncologist who is working with Otto just stopped by to say hello. She can't believe what we have done to keep spirits up around here. She was saying she wish that the entire floor could do something like this. Gets me thinking... :)

      Delete

Post a Comment

Popular posts from this blog

Friday, June 22nd

Good morning!  Otto wants you all to know that he's doing well.  He had another great night, and we are over the moon happy that he has been fever free for 18 hours.  Mark went to rounds this morning with the team, and Otto's counts continue to look really good.  His white blood cells are continuing to dwindle (which is what we want) and his body is preparing itself for the ultimate fight.  So, that's pretty amazing news for us, considering what was dropped on our laps Friday afternoon. I know that it is most likely that people are wondering if we are in good hands.  I will tell you that we are.  The doctors are on top of everything - from what is currently going on to what could happen - and have a plan to counter it all.  We are incredibly lucky to be surrounded by individuals whose life's passion is researching and helping kids with AML to beat it and succeed.  With that being said, we see these individuals from time to time throu...
9 comments
Read more

Wednesday, Thursday and Friday, October 24th, 25th and 26th

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...
6 comments
Read more

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 ...
6 comments
Read more