Saturday and Sunday, October 13th and 14th

Today and yesterday were good days for Otto. He was up and about, taking walks and chit chatting it up. His ANC continues to be zero. We are praying that this new med will kick his bone marrow into drive so we can see that number start to rise. In addition, due to low numbers for platelets and red blood cells, he needed more transfusions this weekend.

The barn raising was an amazing experience yesterday for our family. Mark took Tess along with a few other friends to the event. George, head of the Northford Timber Framers organization, led the charge as people from all walks of life came together to help build the barn. Before the raising began, Mark was asked to speak to the group and share our story. It was an emotional time, but with the support of those surrounding him, he was able to share what has been happening to Otto. George, on behalf of the organization, gave our family a check to put towards our expenses. He, too, is a past transplant recipient, and knows the struggles that families can face. We are so grateful to George and crew for this amazing gift!

A BIG shout out to the Fradkin family for getting a signed ball and hat from Dustin Pedroia, Otto's favorite Red Sox player. He was over the moon thrilled to receive such a gift. Another special thanks to the Nagys for bringing Otto a signed hat from #93 at Lyme Rock Park. These folks from our baseball family mean the world to us! In addition, an extra thank you to all of you who have sent gifts to keep our boy's spirits up! We greatly appreciate all your generosity.

We cannot thank people enough for sharing our blog as well as our story. We can see that so many others have viewed it. We continue to pray that others will send their prayers, positive thoughts and well wishes our way, for Otto needs all of these in order to continue to fight this battle. You would think with all the hurdles that have popped up on his path, that his defense would be down or lessened. Due to all your support, he continues to fight hard. That is something that we are incredibly thankful for.

With so much love and gratitude,

Mark, Leigh, Otto, Tess and Lulu

Comments

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

Thirty Days and Waiting

Search This Blog