Thirty Days and Waiting

Hello to all of our followers.  We would like you to take note that we created a new website called Otto Strong Forever.  Please follow us now at  https://sites.google.com/view/ottostrongforever We hope you all are doing well!  Thank you again for all the love and support!

Hello all, Please click on the link below to see service arrangements.  https://www.munsonloveterefuneralhome.com/notices/Otto-Funderburk With Love and Gratitude

As many of you know by now, our sweet boy left this world this morning at 5:30am. Our hearts are broken. Thank you all for your continued support as we try to work through this. We will update you all about calling hours and a service in a few days.

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 ...

Hello All, We've had a busy weekend that started off with an Ugly Sweater Funder Friday with our friends the Mahoneys! What a great way to start the weekend with good friends decorating, playing fun games and just being together. Saturday and Sunday were busy days too, with visits from Granddad, Aunt Laura, Nagys and Lowells . It was so nice to be with everyone and talk, eat, joke and just be together. Our nights were a little less fun with Otto's coughing acting up some and a little nausea to top it off. This kept us pretty sleepy throughout the weekend and we are in the peak effectiveness of radiation and chemotherapy, so that is contributing to his exhaustion. His Leukemia Cutis is aggressive and he's been having some fevers which could be caused by the leukemia and/or the treatment. We're hoping there is some relief for him in the coming days. He also lost one of his baby teeth Saturday night from his only chewing side of his mouth, due to the leukemia c...

Otto has been fighting hard these last two days.  However, we are pleased to say that last night was a great one for him.  Otto was able to sleep pretty well with little coughing and no visible signs of bleeding from the lungs.  He is still dealing with the cutis spot that has been growing in his mouth, but can take meds in order to prevent it from bleeding.  Today was a great day.  Otto woke up, ready to go around 7am.  He wanted to take a shower, which he did, followed by taking a walk.  We all went out to the Healing Garden where we found it to be a little too windy.  Otto was convinced that he needed to go back in and quick! Our wonderful friend from Child Life at Yale stopped by with a special gift for our family.  She brought us a  6ft Christmas tree (artificial, of course).  We brought ornaments from home and had a decorating party.  Otto was really happy that we could all be together sprucing up the tree and playing...

Hello all - Today is Otto's 5th round of Chemo and 3rd round of radiation. After this we have 7 more days of radiation. Last two nights were tough ones because of Otto's bronchitis recovery. His coughing fits can be intense and painful. While we saw some improvement Sunday night in his phlegm, he has been coughing up blood the last two nights along with nose bleeds triggered by intensity and duration of his coughing. Needless to say, we haven't gotten much sleep. The resident on last evening worked out a good plan to stem the bleeding and reduce the coughing with platelets, plasma, morphine, octreotide, and humidified air as well as sleeping position. The cutis inside his mouth also started acting up Monday evening and bleeding. Somewhat of a unique and complicated bleed location to manage. Our wonderful nurse Lise-Ann came up with a solution of "Magic Mouthwash" and gauze wrapped around his head holding the gauze in place in his mouth so it wouldn't sli...

Hi all. Day 3 of chemo is complete.  We will be starting Day 4 of chemo tomorrow, alongside Day 2 of radiation.  He tolerated the chemo very well today.  Otto had a better night last evening.  He slept longer in bits and had less coughing attacks. Today we discovered that his cutis is now forming on the inside of his mouth.  This can make eating a little challenging, so we are headed back to soft, easy to chew foods.  Otto is such a trooper! Towards the end of the afternoon, we were noticing signs of some internal bleeding.  He's getting some platelets along with plasma to help with the bleeding.  We are thinking the bleeding could possibly be a result of all the coughing episodes he has endured over the last few days.  We continue to pray for healing.  We thank you for your prayers, too! Mark, Leigh, Otto, Tess and Lulu

Good morning everyone! The first day of chemo and radiation are over.  They both went somewhat smoothly.  The plan is to continue chemo today, where as radiation will begin again on Monday.  Chemo is a course of 5 days, and radiation is 10. Otto has been fighting a cough over the last few days.  Yesterday we were told it was bronchitis, however, now there is a question about if it could be pneumonia as well.  Either way, they are causing him to have a build up of phlegm resulting in coughing attacks.  The constant coughing is also leading to some more pain in his back and rib cage.  This caused us to have a really rough night last night.  So, now we are adding in some more meds in order to control all of it. Thanks again for all the love and support! Please continue to say prayers for our boy who is fighting so hard! Mark, Leigh, Otto, Tess and Lulu

Happy Thanksgiving, everyone!  We are hoping that you all were able to get some good, quality time with those whom you love. That, and have a delicious meal!  ;)  Otto was so happy to be out of the hospital, with most of our Connecticut family. We all gathered at Grandads house and had a delightful dinner along with some amazing desserts!  Our time together was lovely. Today, we are switching gears. We are back at Yale and are all set in an inpatient room. We cannot get over all the love and support from our team of nurses and friends from a child Life  who decorated his room. It is so special! Right now, we have a few things going on. Two were expected - radiation and chemo. However, while checking in, we we’re explaining to the docs that Otto has had a nasty cough over the last few days. X rays confirmed they believe it’s bronchitis. Poor kiddo even started with a fever once we checked in. Blood cultures were drawn just to confirm that it’s not bacterial, ...

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 m...

Hi everyone! We are HOME!  Otto is home and he is loving life!!  We were able to get out of the hospital and our plan is to stay out til the Friday after Thanksgiving.  A big thank you to the docs and nurses who helped make this happen. Otto has had some nice visits with friends and family.  We also currently have some family up for tonight's dinner.  A HUGE thank you to all who are able to come in support of our family.  Another HUGE thank you to all of our baseball family that came together to make this happen. I'm keeping it short and sweet today! Sending so much love, Mark, Leigh, Otto, Tess and Lulu

Good afternoon!   Otto has continued to be well over the last few days.  We have been given the clearance to leave the hospital on Tuesday.  We are hoping for a morning discharge, so we can get home and meet with the home heath crew.  The home health crew will then guide us in our administration of certain IV meds that will be continued to be given at home.    We are really looking forward to being at home and hanging out as a family.  We have discussed staying out of the hospital until after Thanksgiving.  It is then we will be readmitted for another round of chemo.  As stated before, this is a low dose chemo and we hope for the cutis to be contained or reduced.   Hoping you all are doing well.  Thank you to all who have sent gift cards for gas and food.  They are very useful in our travels back and forth.  Thank you as well to all who have helped with rides, visits, etc.  We couldn't do half of the things we a...

A good morning to you all! Otto's last two days have been great ones.  He's been enjoying seeing visitors and hanging out.  He's also still insisting on watching Marvel movies!  A big thank you to the Murphy family for supplying us with some of those.  It makes the rainy days go by faster, for sure! We had a brief discussion with Boston Children's the other day.  After speaking to an oncologist there, along with our primary oncologist at Yale, we have decided to put some things into play.  The first part of our plan involves time at home.  Otto is now stable - no signs of internal bleeding, no fever, no upset stomach.  It looks like the food we have been slowly incorporating back into his diet, along with certain meds, are helping him to become stronger on a daily basis.  The plan is to come home possibly on Tuesday and be at home through Thanksgiving.  After Thanksgiving is over, we are scheduled to come back to Yale for the next pa...

Hello there!   The last three days have been good ones for Otto.  He continues to be stronger and is showing no more signs of internal bleeding.  Things have seemed to have settled for now.  He has been on multiple walks and even stayed out in the healing garden for over an hour the other day!  Of course, he enjoyed playing Monopoly Deal with one of the wonderful volunteers.                                                     Otto has been allowed to start back with solid foods.  We are sticking to one new item a day from a list of easily digestible foods.  So far, so good!  He continues to drink bone broth, which we feel has been very helpful to his healing process.   Today, we were asked if we wanted to take portraits through the Circle of Care organization.  Apparently, they do this once a y...

Good evening, all!   Otto has had two nice days in a row.  He's shown more energy and is taking walks, chatting it up with nurses and enjoying hanging out.  We have also had a few visitors over the last few days.  That has also been nice.   We heard back from Boston and we will be having a phone conference with one of their oncologists that have reviewed his records.  Although our doctor has been in contact with the one in Boston along with warning us that we will most likely hear the same diagnosis and treatment protocol from her, we still need to talk to this lady.  We just need to know if there are other alternatives to the path we are currently on.   We do say it often, but it bears repeating.  Thank you to each and every one of you who find the time to send love, prayers and positive thoughts our way.  We really do find it helpful, more so Otto.  That's part of where we feel he finds his strength to fight.  He ...

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 t...

Good evening!   What a wonderful day to wake up and reminisce about yesterday's Wish day.  A special thank you again to Patti, Dawn and Cheryl for making our boy's dream a reality.   Today has been a good day thus far.  Otto has been up all day, watching videos and movies as well as taking walks to the Healing Garden.  Otto was even able to sit down with the Digital Art Therapist who helped him construct a video comprised of many of the pictures we took at the parade.  He had a wonderful time doing this and was proud of his accomplishment.   We are waiting to talk to Boston Children's in order to set up a time next week.  We are going to be meeting with a team of individuals who reviewed Otto's case and past history.  We are praying that God will lead them to a better approach to helping Otto through this difficult journey.    We were also notified today that Fox 61 will potentially being doing an exclusive on Otto in regard...

Happy Halloween!!! And a Happy Make A Wish Day!!!   Before we mention everything that happened today, we need to say thank you to an amazing crew. Patti and Dawn are our wish granters who took so much of their time to put this event together. Cheryl, head of the Make a Wish CT chapter, was instrumental in helping to put things in place. And who could forget the Make A Wish MA chapter, also helping to put things in place. And last, but not least, our amazing friends and family who came out this morning at 5:30am to welcome us, make us extra excited, and send us off in style. Without the love and support of our community, we would be no where. So much love to all of you who came out today!  It was remarkable!   Our day started at the crack of dawn. We got up, suited up in our Sox gear, and were out those doors heading to the elevators.  We cannot even fully describe the love and support standing outside the doors of the Children’s Hospital. Before the doors even ...

Good morning!   What a crazy last few days we have had!  Otto watched his favorite baseball team win the World Series.  The family was questioning if they should lose Game 5, so we could come back to Fenway for Game 6 to win it.  Otto, on the other hand, just wanted to see them win.  One of Otto's biggest surprises came when he started getting messages from some of the staff of the Red Sox team.  Texts encouraging him to continue his fight were greatly appreciated by all, especially Otto.  He even was able to talk to a relief pitcher who played for the Sox a few years ago.  What an amazing experience for him!  A big thank you to the Dadonna and Fellin families for coordinating this.  What a gift!   Speaking of gifts, we were very fortunate to have been able to hold a small gathering at the hospital the other day.  Otto really wanted to see the boys from his baseball travel team.  Many of these kids have been playing...