Skip to main content

Friday, September 7th

Good afternoon!

Today is procedure day.  Otto is currently in the OR with doctors as they are determining what is actually within his lungs.  We just got a call from the nurse stating that he went to sleep nicely and that they are all taking very good care of him.

Over the night and through this morning, Otto continued to have a low grade fever.   We are really hoping that this procedure leads us to the source in which is causing his body to react this way.

On a happier note, Otto's blood counts came back showing that he is holding on to his platelets and in addition, has an ANC of 300.  This is crazy!  It's only Day 21 and he has never shown a bounce back this early before.  After speaking to the docs, they think the reasoning behind this is that his body is trying to produce the ANC needed to fight the fever.  It is likely that when they check tomorrow, there may be a dip.  However, this is the glimmer of hope that we have been waiting for to keep our thoughts happy and positive.  A big thank you to God for that one! 

Wanted to say thank you to all of you who continue to reach out and check in with us.  As always, we continue to feel that sense of family and community coming together, supporting our every move.

A special thank you to MES.  It's been a little bittersweet not being able to start the school year as I always do.  I am so incredibly thankful to be able to be home to support our boy, but miss my usual routine.  I am also so thankful for those who have taken the time to help us over the summer (Marc with the pool, community with providing meals, multiple phone calls and texts sending us love and support).  You guys mean the world to our family!

So much gratitude and love!

Mark, Leigh, Otto, Tess and Lulu

Comments

  1. Mrs. CSeptember 7, 2018 at 7:28 PM

    Love you Otto, prayers for you always, stay strong kiddo.

    ReplyDelete

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