Skip to main content

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 well!  Otto is right on a mission to watch all the Marvel Comic movies.  If you have any good suggestions, send them to us!

We continue to be thankful for all the love and support our community gives us as well as our family!  You all have been amazing to us!!

With love and gratitude,

Mark, Leigh, Otto, Tess and Lulu


  1. We love you Funders, Otto keep fighting, I love you kiddo. We are praying hard for you.
    Mrs. C

  2. We love you so much, Otto! Keep up that fight, kiddo! You are the bravest, strongest kid I know! Praying for you every moment of the day-
    Lots of love-
    Mrs. Grieder

  3. Ok so Josh says any of the Captain America movies are good and Infinity War but Ant Man is more kid friendly. (Jeez, check the ratings first!). Many prayers for a good week ahead and for your talk with the hospital in Boston.❤️
    -Lainie and Josh


Post a Comment

Popular posts from this blog

One Day at a Time

Hey all,

  So as many of you know or are coming to find out, Otto has been diagnosed with AML.  This is a type of leukemia.  He is being treated at Yale Children's Center and will be here for the next 4-6 weeks.  Chemo started last night and we saw minimal side effects.

  Our boy is a fighter!  He's going to make it out of this place stronger than ever!!

  Many people have reached out and to that we are grateful.  We can completely feel the love and support from so many of our community members, who are really like family.  For all of you who have said prayers, put Otto's name on a prayer list, etc. - we thank you.  We deeply believe in the power of prayer and the wonderful things that can happen due to that.

  As for now, it is a waiting game.  Waiting for the 10 days of treatment to be done and completed.  Waiting for blood counts to continuously come back with what we hope to see are positive changes.  Waiting to see what the next steps are.  But together, our family wi…

Friday, October 12th

Otto has had a good day today.  He's been out at least twice going on nice long walks.  We were really happy to see that his lungs were hard at work!

It looks like Otto's counts for his ANC level is 0.  We were hoping that they were on their way up, but the 300 ANC was a false read.  So, unfortunately, that means he has to continue with the no eating, no drinking rule. 

Tomorrow we are working with the team to see if we will give Otto this particular medicine that will stimulate the production neutrophils, the substance that the body produces to create the ANC.  By doing this, we will be hopefully helping his body develop the ANC count over the next few days.  This will allow his body to get into the range that would be considered safe for surgery.  Surgery is needed to remove the fungus that is attached to his liver.  We pray that there are no major side effects from this.

Tomorrow, Mark and Tess, along with some other close friends, will be attending a barn raising.  The own…

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 hospital ha…