I will start with an apology. I can’t even remember the last time I wrote a blog entry. I don’t know why. I can’t even tell you what I have been doing with my time. Nothing really and certainly nothing Daniel/medical related and I am 1000% grateful for that but I am also not busy with anything relevant. I feel like I am spending my entire 9 to 5 catching up with …I don’t but it still doesn’t get done so in other words I guess I am just being a typical home mom and things are normal, so again I will just shut my mouth.
But I must back up- SUPERBOWL people. Although I would have loved Daniel to write something about his experience, Daniel is just too darn busy being Daniel. So I will need to try and do his weekend justice. I know I can’t come close to describing the experience he and his Dad shared but I know it was a once in a lifetime experience that they both will always remember and for that I am glad, and also very jealous. From the moment they set off to the time they touched down they took in every piece of the Superbowl 50 happenings. Seeing as though Rob’s 50th birthday is just around the corner I made sure that Daniel was on the lookout to take as many pictures as possible to capture every moment. Not to mention I wanted the play by play at all times. As much as I wanted them to have their time together I really wanted to share the experience too. I felt that I had put so many hours into Daniel’s football shows and interviews and all of his Hospital Ambassador work and then this final prize was happening and I was sitting on my hands at home. Ugh. I was at a total loss but also realized that this is how Rob feels missing out on all of the fun stuff for the past year. Except this really was the fun finale and I just did a crap load of work to get him there. Anyhow. The work wasn’t done. I was already working the phones and emails setting up some connections for Daniel to make up on him.
https://www.nfl.com/share/10103061-7033-0000-0063-335666b7c015?campaign=social-share
When I texted our hospital friend (who was also there) to tell him to hurry over to meet up with Daniel to catch him live he sent me this message.
We’re also at SuperBowl City and they interviewed some Bronco Alumni in front of 3,000 fans. Mark Jackson said “Everytime I watch the ‘Broncos Go’ video from Children’s Hospital, I cry. It’s simply amazing!” Then the crowd went wild.
I was so touched by this.
I was so crazy not knowing what they were doing but knew they were so busy having fun, I left them alone from here on out for the day. I don’t think I heard from them again until they were on their way back to the hotel for the night. I do know that I did not get a lot of pictures sent or a lot of details but they were both crazy excited for the big game day.
All I can say about game day was these two got their moneys’ worth. I think they were the first ones there and the very last ones to leave. I got highlights and some pictures as the day went on.
Some were:
The golden hotdog (I do not believe this was a highlight however)
Seeing several friends he had made this year
Getting to hold the first defensive touchdown ball (guy in his row caught it)
OF COURSE the W
Getting a very awesome jacket that only players have
Dad stealing a banner from the stadium gates after it closed down (and not getting arrested) making memories people
When they got back Daniel was so excited to tell everyone about everything. Rob bought us all some great swag and when Daniel had his doctors appointment the following day I am not sure if there was any medical talk. In fact I don’t think the next few appointments had much check up news it was mostly Daniel telling all the Doctors and Nurses about the SuperBowl. He had a great Superbowl wrap-up show with Mark Haas swapping stories from their points of view which was pretty funny since Mark was the head local reporter for the game.
Then on the Tuesday Denver literally shut down for their Denver Broncos to show their pride and joy in the form of a city wide parade and rally. How can you actually go see the team win at the game and not go to the parade right? So it was my pleasure to take Daniel and his closest buddies downtown to join the rest of the state for the entire afternoon on a glorious springlike day. What an unbelievable celebration of sportsmanship and a city’s pride. The boys had a good time and maybe a little too good after ‘breathing in an afternoon of smoke what you want where and when you want Colorado’. The boys rushed to a basketball game right after the rally and I gotta be honest if they were randomly drug tested I don’t think they would have passed. Geez people- family parade!
So the energy has kind of mellowed slightly, except until Daniel had his buddy ‘Super Bowl 50 Champion’ Broncos Linebacker Todd Davis on his Tuesday D[ P] R show. He met Todd before the season started at the Broncos Kick Off Luncheon and has been friendly with him ever since and when I say this young man could not be any kinder, I am not exaggerating. Humble, generous, sweet are just the tip of the iceberg describing this gentleman. Plus I get a kick out of the idea that Daniel spends time texting with him during class or some nights. How cool is that. He took some of Daniel’s business cards (which he thought was fabulous, he said he didn’t know why he didn’t have business cards of his own and that he would be asking about this) and said he would give them to his team mates and get them to come on Daniel’s show because he loves being on his show.
Next on tap is Daniel is going with the hospital on a trip he wasn’t able to attend last year. His favorite Doc Bob heads up a trip each year for a small group of oncology patients to head out to Arizona to Rockies Training Camp for the weekend. How about that?
Medically Daniel is getting stronger all the time. This past week he started back at physical therapy a few times a week. But not at Children’s Hospital. He is actually back at the place he was at years ago for rehab after his foot surgery. He liked it there and he was still having a lot of problems after basketball with pain. This will help him in his recovery and strengthening as we have a big physical challenge we are looking into. More to come on that. Check him out getting stronger.
Oh by the way I forgot all clear eye checkup. No evidence of anything going on in his eyes anymore so we now we get to extend his eye exams to every 3 months. That will be nice.
Next up at the hospital will be another check in with a bone marrow aspirate and a DEX scan for bone weakness. Last month instead of a bone marrow biopsy the doctors felt comfortable doing a peripheral blood sample to check his chimerisms. This is the level of donor versus host (Daniel) that we are closely watching. We are STILL at about the same as we are so we keep up the schedule of checking monthly. But we watch and do not have any plan to do or change anything. I do have to say that FINALLY Daniel is at his original weight he was at at diagnosis so that is huge. He is not huge but it is huge that his weight is up. He actually asked me for snacks to put in his locker because he gets hungry a lot at school during the day. Woo hoo music to my ears. Signs of a typical teenage boy.
But I must back up- SUPERBOWL people. Although I would have loved Daniel to write something about his experience, Daniel is just too darn busy being Daniel. So I will need to try and do his weekend justice. I know I can’t come close to describing the experience he and his Dad shared but I know it was a once in a lifetime experience that they both will always remember and for that I am glad, and also very jealous. From the moment they set off to the time they touched down they took in every piece of the Superbowl 50 happenings. Seeing as though Rob’s 50th birthday is just around the corner I made sure that Daniel was on the lookout to take as many pictures as possible to capture every moment. Not to mention I wanted the play by play at all times. As much as I wanted them to have their time together I really wanted to share the experience too. I felt that I had put so many hours into Daniel’s football shows and interviews and all of his Hospital Ambassador work and then this final prize was happening and I was sitting on my hands at home. Ugh. I was at a total loss but also realized that this is how Rob feels missing out on all of the fun stuff for the past year. Except this really was the fun finale and I just did a crap load of work to get him there. Anyhow. The work wasn’t done. I was already working the phones and emails setting up some connections for Daniel to make up on him.
https://www.nfl.com/share/10103061-7033-0000-0063-335666b7c015?campaign=social-share
When I texted our hospital friend (who was also there) to tell him to hurry over to meet up with Daniel to catch him live he sent me this message.
We’re also at SuperBowl City and they interviewed some Bronco Alumni in front of 3,000 fans. Mark Jackson said “Everytime I watch the ‘Broncos Go’ video from Children’s Hospital, I cry. It’s simply amazing!” Then the crowd went wild.
I was so touched by this.
I was so crazy not knowing what they were doing but knew they were so busy having fun, I left them alone from here on out for the day. I don’t think I heard from them again until they were on their way back to the hotel for the night. I do know that I did not get a lot of pictures sent or a lot of details but they were both crazy excited for the big game day.
All I can say about game day was these two got their moneys’ worth. I think they were the first ones there and the very last ones to leave. I got highlights and some pictures as the day went on.
Some were:
The golden hotdog (I do not believe this was a highlight however)
Seeing several friends he had made this year
Getting to hold the first defensive touchdown ball (guy in his row caught it)
OF COURSE the W
Getting a very awesome jacket that only players have
Dad stealing a banner from the stadium gates after it closed down (and not getting arrested) making memories people
When they got back Daniel was so excited to tell everyone about everything. Rob bought us all some great swag and when Daniel had his doctors appointment the following day I am not sure if there was any medical talk. In fact I don’t think the next few appointments had much check up news it was mostly Daniel telling all the Doctors and Nurses about the SuperBowl. He had a great Superbowl wrap-up show with Mark Haas swapping stories from their points of view which was pretty funny since Mark was the head local reporter for the game.
Then on the Tuesday Denver literally shut down for their Denver Broncos to show their pride and joy in the form of a city wide parade and rally. How can you actually go see the team win at the game and not go to the parade right? So it was my pleasure to take Daniel and his closest buddies downtown to join the rest of the state for the entire afternoon on a glorious springlike day. What an unbelievable celebration of sportsmanship and a city’s pride. The boys had a good time and maybe a little too good after ‘breathing in an afternoon of smoke what you want where and when you want Colorado’. The boys rushed to a basketball game right after the rally and I gotta be honest if they were randomly drug tested I don’t think they would have passed. Geez people- family parade!
So the energy has kind of mellowed slightly, except until Daniel had his buddy ‘Super Bowl 50 Champion’ Broncos Linebacker Todd Davis on his Tuesday D[ P] R show. He met Todd before the season started at the Broncos Kick Off Luncheon and has been friendly with him ever since and when I say this young man could not be any kinder, I am not exaggerating. Humble, generous, sweet are just the tip of the iceberg describing this gentleman. Plus I get a kick out of the idea that Daniel spends time texting with him during class or some nights. How cool is that. He took some of Daniel’s business cards (which he thought was fabulous, he said he didn’t know why he didn’t have business cards of his own and that he would be asking about this) and said he would give them to his team mates and get them to come on Daniel’s show because he loves being on his show.
Next on tap is Daniel is going with the hospital on a trip he wasn’t able to attend last year. His favorite Doc Bob heads up a trip each year for a small group of oncology patients to head out to Arizona to Rockies Training Camp for the weekend. How about that?
Medically Daniel is getting stronger all the time. This past week he started back at physical therapy a few times a week. But not at Children’s Hospital. He is actually back at the place he was at years ago for rehab after his foot surgery. He liked it there and he was still having a lot of problems after basketball with pain. This will help him in his recovery and strengthening as we have a big physical challenge we are looking into. More to come on that. Check him out getting stronger.
Oh by the way I forgot all clear eye checkup. No evidence of anything going on in his eyes anymore so we now we get to extend his eye exams to every 3 months. That will be nice.
Next up at the hospital will be another check in with a bone marrow aspirate and a DEX scan for bone weakness. Last month instead of a bone marrow biopsy the doctors felt comfortable doing a peripheral blood sample to check his chimerisms. This is the level of donor versus host (Daniel) that we are closely watching. We are STILL at about the same as we are so we keep up the schedule of checking monthly. But we watch and do not have any plan to do or change anything. I do have to say that FINALLY Daniel is at his original weight he was at at diagnosis so that is huge. He is not huge but it is huge that his weight is up. He actually asked me for snacks to put in his locker because he gets hungry a lot at school during the day. Woo hoo music to my ears. Signs of a typical teenage boy.