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

Comments

  1. Mrs. CNovember 4, 2018 at 5:11 AM

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

    ReplyDelete
  2. Kerri GriederNovember 4, 2018 at 5:17 PM

    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

    ReplyDelete
  3. Lainie RioNovember 5, 2018 at 4:19 AM

    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

    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

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 ...
9 comments
Read more