Skip to main content

Monday and Tuesday, November 19th and 20th

A good afternoon to you all!  What an eventful last few days we have had. Otto is doing well being home. Home is definitely the best medicine!!  We are currently at Clinic. Numbers looked ok and we are just waiting for some platelets to arrive so we can get a transfusion.

Sunday evening, we gathered at Julio’s in Southbury, where our friends, the Springers, along with their staff, served the finest food to an amazing group of people. The Springers, alongside the Nagys, Lowells, Mahoneys, Velkys and Macioleks, spearheaded the Otto Strong fundraiser on behalf of our baseball family. A special thank you to them as well as the other members of our baseball family who helped with this event. It was beautifully put together and ran so smoothly!

That evening was one filled with love and positive light. We couldn’t believe how many people were able to attend. We also caught wind that there were many others who wanted to be there, but could not due to the event being sold out. No matter if you were present or not, we appreciate all the love and support from you all. Thank you so much to those who spoke on our family’s behalf - Ian, Michaela, Lise and Katie - you all are so special to us and we are so very grateful for your words.

Another thank you goes to all our family members who came in from various out of town areas to be part of our special event. It meant so much to have you all there, under one roof!  It was also so nice being with you for the weekend.  Since being admitted in June, bouncing back and forth between home and Yale, we haven’t gotten a chance to get back to Rochester.  You definitely filled our hearts with lots of love!

So our plan is to have a fabulous meal at Grandad’s house on Thursday. Then, we will be back to Yale on Friday to be inpatient for about a week. Low dose chemo is still the plan along with an updated CT scan and some possible radiation on a few spots that are starting to bother him. Fingers crossed for some great days ahead!

So much love, gratitude and thankfulness!!

Mark, Leigh, Otto, Tess and Lulu


Comments

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