A big thank you to all the people who stopped by throughout the day for Luau Friday. We are so blessed to have so many people want to join along. Our oncologist even decided to buy Otto and Mark a fedora for the occasion! Here are some pics from the yesterday. Matching with Dad Grandad and Barbara joined in on the fun, too. Otto sporting his Hawaiian shirt. Hanging out with the Mahoneys and Taylors! Showing the "Luau Love". Any resemblance? Other than spreading the Luau Love, we don't have much of an update. Numbers are still the same. Otto also needed some more platelets this morning, but is feeling fine for the most part. We were pretty happy that he woke up with no issues with his eyes. Hopefully, this continues. Hoping this message finds you all well. With love, Mark, Leigh,...
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Aloha! It's Luau Day!! Our room, as well as ourselves, are dressed in our favorite Hawaiian gear today. The nurses and docs are joining in, too! We have quite a few special guests arriving today for some visits. Otto is excited, but even more so for a few friends coming up from Boston. It is going to be a great time! We have been up early today. Otto is starting to lose some of his hair. Poor kiddo got some short pieces of hair right in his eye. Needless to say, we called the nurse for some saline to flush it right out. It seems to be more bearable now, so hopefully the eyes improve over the course of the day. We are still waiting to hear about his regular blood work check. I am assuming that his numbers will be the same. We are on Day 19, so fingers crossed for some counts to build in the next few days. Update: Yesterday, we got some packages in the mail. A big thank you to my other cousin in NJ who s...
What a fun evening of fireworks and light shows! We were all able to walk out to the Healing Garden to see those beautiful shades of color pop into the air. It was a great knowing that we weren't missing out on something we have been doing on a yearly basis. The garden sits towards East Rock Park. So were were able to watch the New Haven fireworks show. Although we were missing one of the members of our troop (Tess was with friends), it was nice to be together. From a medical standpoint, Otto continues to wait for the ANC counts to go up. Once those numbers start climbing, then we will know that his immune system is starting to rebuild itself. Yesterday there was question of whether his temp was getting a little higher than desired. Thankfully, it continues to border just below the point where more tests would have to be conducted. Hoping that prayer and positivity will keep him there. Other than that, we are walking,...
Happy 4th of July from our fun and fantastic room here at Yale Children's Hospital. Mark and I arrived this morning after having a night out on the town. Otto got to spend some quality time with our buddy, John, where they built a Legos Star Wars model, watched a movie, and went for walks. Overall, it was a good night for Otto. The girls were busy with their friends, too, so Mark and I were able to get away for an evening. It was so nice to be able to sit, laugh and talk other than in the hospital. That evening was much appreciated! Otto's counts still are waiting to rebuild. His eyes are actually better today. He's not been asking for the drops, so that's a great thing! We continue to get ready for Luau Day on Friday. We got attire ordered and ready to go. Many staff members have commented on how they, too, are going to dress the part. So glad that people are enjoying and partaking in our good vibes. Thank yo...
Hi everyone. Today we are going for the short, but sweet post! Otto’s continuing to do well as he waits for his counts to start rebuilding. He knows it will take some time, but he’s very thankful that the docs and nurses are taking such good care of him. Otto had a few friends from swimming/ school come to visit today. We cannot express how great it is to see his face light up when he sees those familiar faces!! You know everyone is feeling good when you are all goofing around! Hoping you all enjoy your holiday tomorrow!! A huge thank you to the Samsons for helping Mark and I have a night out together. Sending you all so much thanks and love!! Mark, Leigh, Otto, Tess and Lulu
We've been having a great day today. Otto's counts continue to be the same and steady. His eyes are a tad better today than yesterday. He continues to need steroid drops, but they work! We had a nice visit this morning from friends. There's nothing better than talking over coffee! Later on, we saw a few more familiar faces before Tess took off on vacation with friends (a big thank you for that!!!). We continue to watch soccer on a regular basis. It's so much fun to watch two teams battle it out, with a score of zero to zero, playing for 120 minutes (can you sense the sarcasm? lol!). So, nothing new other than the fact that we are on day 14. Like we said before, it is a waiting game. Hope everyone is well! Much gratitude, Mark, Leigh, Otto, Tess and Lu
Happy 1st of July! Wow. We can't believe we are into July. We are on Day 13 of this crazy adventure. Counts are still where they need to be and now it is a waiting game to see when they start to rise. After speaking to the oncologist this morning, it looks like numbers will not start to rise until around day 21. So, in reality, it's just getting through the next 7 days or so. The staff here continues to be amazing. Not only do they answer our questions, but they are also full of compliments on how our community, family and friends are so supportive. Apparently, they haven't had a family like ours on this floor in some time. One of our nurses told us that if we they could pass out awards, we would get the one for most spirit. ;) This morning we get to learn how to flush out Otto's Broviac. A Broviac, for those who don't know, is a port-like device that is installed and used to send meds, transfusions, etc. directly i...