Skip to main content

Thursday and Friday, August 16th and 17th

Hello all!

  Yesterday was an amazing day.  The Riverview Cinemas 8 in Southbury allowed us to come to the theater yesterday morning with a few friends to watch The Meg.  This is a movie that Otto has wanted to see since the trailer came out.  We were the only people in there.  Our neighbor, Kim, had arranged this and we were over the moon excited!  So, a special thank you to her!!


                                               

  Today, we came into Clinic and then quickly realized that we gave Otto breakfast.  That was a no-no, for he was to have a procedure done in the morning.  So, we were asked to wait until 1pm when he would be ready for sedation.  The procedure went fine and we are now inpatient waiting to start chemo tomorrow morning. 

  Tomorrow will be Day 1 of Round 3.  We are moving into the first of the last three rounds that will gradually get more intense as he moves through them.  Although the next three are going to be a test to Otto's body, the good thing is, if it works (which we are very optimistic), then he's done.  After Round 5, it's checkups from then on.  We just need to keep praying that Otto can make it through the next 3 rounds with no major hiccups.

  We'd really like to continue to thank all of you who have provided us with meals.  With everything going on, it is a wonderful feeling not to have to worry about planning out meals and cooking all the time.  We are very blessed in so many ways - and the blessings just keep coming.  More and more each day, we continue to see signs pop up telling us that everything is for a reason and that we are going to make it out of this.  The more people we meet, the more we talk to people, the more connections we realize are there.  When those connections present themselves, it solidifies that we are with the right people. 

  With gratitude and love,

Mark, Leigh, Otto, Tess and Lulu


Comments

Popular posts from this blog

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 researched and reached out to another hospital.  The particular

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 throughout the day.   Our ultimat

Wednesday, June 20th

Hi everyone,   Hoping this message finds you all well.  We are ever so grateful for the continuous messages of prayer, positivity and love.  Otto is a very lucky boy to have all of you in his world.   So, we got back the results of his spinal tap and we are incredibly happy.  There are no leukemia cells that appear to be in the spine.  What does this mean?  Three less bags of chemo to have to take during the 10 day period!!!   Yesterday was Day 2 of chemo.  He had one dose in the morning followed by two doses in the early evening.  For the most part, his body handled them ok.  He's still getting fevers here and there, but thankfully Tylenol kicks in to make things better.    Today is Day 3.  We are looking at 4 doses throughout the day.  One thing I am noticing is that chemo makes you tired and sleepy.  All that is telling us is that his body is taking it's time healing itself.  And we are just fine with that!   Two days down and eight more to go!  We've got this,