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

    ReplyDelete

Post a Comment

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

Monday thru Thursday December 3rd - 6th

Hello Everyone, Last chance to get an Otto Strong T-shirt if you haven't already. Here is the link: www.rsvpinvitations.net/shop. Order by Sunday. It has been a long difficult week. Otto's nights are still restless with bathroom trips, occasional coughing, nose bleeds, and nausea. We've peeled back some meds to help relieve some of these side effects making him more comfortable and we've increased his pain medication to alleviate his pain. His baby tooth bleeding has finally gotten under control after several days trying various techniques from some starch/potato powder, gauze with pressure, amicar(spelling), "magic mouthwash", gel gauze, to some surgical glue - sorry,  that was not too specific with the medical names, but rest assured it was a lot of attempts and failures, but finally not bleeding! Throughout it all we were down as low as a count of 2 for red blood cells and 8 for platelets. Otto received several bags for support.  Monday thru