Skip to main content

Friday, July 20th

It’s been a long day today, but we are making it through it just fine. Otto had to be to Clinic today for 9:15am. This was followed by an Echocardiogram as well as an EKG baseline.  Counts were looked at and they are continuing to rise. Once we were given the ok that all tests today were normal baselines, we were told that we would be moving back to the same room in the Hem/Onc ward.

As we were approaching the entrance, the doors opened and we were greeted by one of our favorite girls, Ellie!  We all screamed out with cheers, for she had asked to be assigned to Otto’s room for the day. We were also able to meet up with our favorite Child Life specialist, Teresa, who surprised us with a Star Wats homemade poster!  She found out that today was Star Wars Friday for the Funders!!!!  Apparently another child in our wing asked for a Fiesta Friday. Teresa combined efforts and created Star Wars badges for all staff. Each character was topped off with a sombrero. This, of course, lead all of us to speaking like Star Wars characters with Spanish accents. The nest was when the new intern Dr. Church came in with Vader in a sombrero and said, “Luke... I am your padre.”  He will now be known as Dr. Padre.
Star Wars Fiesta Badges for all the Staff!

Dr Padre's believes in the force


Later in the day we were visited by Grandy, Papa, Auntie Kay and Uncle Dick.  Then our amazing Mahoney family stopped in with all sorts of fun and games. We had so much fun, we decided to extend Star Wars week one more Friday!  A special thank you to the Springers for a yummy dinner!!!

Chemo started early this afternoon and so far, so good. One day down, seven more to go!  Fingers crossed for a smooth walk down this road!

Sending you all gratitude and love!

Mark, Leigh, Otto, Tess and Lulu

Comments

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
7 comments
Read more

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
11 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 fine with that!   Two days down and eight more to go!  We've got this,
9 comments
Read more