What a joy this week has been to look back and realize it has almost been normal. Well if normal means judging a hospital talent show and spending a day at the Broncos training facility and meeting some of America’s football idols. I should back up and start with a nice relaxing day off from the hospital on Monday which was Labor Day and a day off of school and work. Rob closed the store on both Sunday and Monday and I can’t even remember the last time he did that and just had time doing nothing. In hindsight a little vacation would have been nice and what we would have probably done if the circumstances were different, but this was nice too. But low and behold Tuesday came bright and early and so did Daniel’s Monday morning infusion to catch up from Tuesday. It was very tough waking up after a long weekend but off we went. All was good at the check up and in fact great, considering that Daniel is now off all oral medications (except a multivitamin and a couple over the counter as needed things). We are quickly rolling along to the finish line and excited for a follow—up eye exam in just a few weeks to see if we can finally stop daily I.V. infusions. That will be the best of all. Before you know it the one year mark (November 12th) will be here. Daniel is even down to neupagen only once every two weeks. This is the synthetic booster that helps elevate his ANC (Absolute Neutrophil Count). The only thing that Daniel really need to increase these days is his weight and strength. That is our new goal.
Just as we were wrapping up our appointment Daniel got a call from the mail room at the hospital that there was a delivery for him from the business office. How peculiar? They rush delivered his new business cards up to him in the clinic. How awesome is that? He was glowing. He immediately found his doctor in the hall to give him one that was hysterical over it. He looked at Daniel with a serious face and shook his hand. He then remarked with how he was still going to wipe the floor in fantasy football with him even though they both work for the same organization now. Daniel has a hospital legue he is commissioner of that includes a few Doctors, nurses and staff at the hospital.
After all morning medical obligatons it was on to his hospital job. Daniel was expected down in the beautiful theater of the hospital where he would be judging the staff Broncos spirit contest. He would be the ‘celebrity judge’. He was introduced as the Hospital’s ambassador that wrote the hospital’s favorite theme song. When this was announced the moderately sized crowd (a couple hundred maybe) erupted in cheers for Daniel. It was really special. Throughout the silly talent contest there was Broncos trivia which Daniel was excluded from participating in since it was probably unfair that Daniel knew all the answers. The contest was for tickets to the home opener and let me tell you there are some real Bronco fans out there. Sheesh what people won’t do for some Bronco tickets. After some great laughs and the contest was over it was so great to see Daniel so eager to get back to school. He is so happy to be back. He is not afraid to be missing school for appointments and Bronco obligations and is staying caught up I think but it will get harder and harder as the school year goes on. Yet he still has time for lots of video games and even more fantasy football so I don’t feel too bad yet.
The next day the excitement was palpable as he went to school in the morning for a few tests but ready to be picked up at 11:35. He was expected out at The Broncos training facility at 1:20 and he did not want to be late. He takes his job responsibilities seriously and the excitement pulling up to the building was only hampered slightly by the fact that his mother had to drive him. Well who else would be carrying all his stuff. We got there early and talked about who we would possibly meet. When it was time to go in I thought he was going to fall over from excitement but still appeared amazingly calm and collected…oh maybe it was me that was overly excited. Not to meet the players. I don’t know one from the other, but just to see him in all his glory. We walked into the building and I was amazed at how beautiful the whole facility was. We were greeted kindly by everyone we met and Daniel was given his official press pass and lots of fun shwagg. Yep that basically meant more stuff for me to carry. We were given a grand tour of the facility, well most of it. A lot of it was off limits to us. I think Daniel thought it was very cool how secretive much of it was. When he went into the team room (I think that is what it was called) where all the players sit and watch film and hold meetings I truly thought he was going to explode. We were not allowed to take pictures. There was a woman with us taking photos that I hope will get some to us. If you could have seen his face when he then walked onto the field and the whole team was right there in front of his eyes. Larger than life. Literally larger than anything I have ever seen before. They were running right by him left and right and he was like a kid in a candy store. He was then distracted by the draw of press time and the media interviewing Coach Kubiak I think it was. As he took a poised position the person assigned to us as our concierge I guess you would call it for the day got apprehensive. We assured her he would not interrupt and would be very professional. This was no kid that was going to mess things up. But then I got a little nervous that he would overstep the media line so to speak and use the media pass privilege and start asking questions. He didn’t but I could see the wheels turning and him soaking up every moment that was happening. This was his future in front of him. How exciting. Plus how many of these guys get to take their moms to work (what a lucky kid). As all this was happening several people were scrambling around us trying to make something happen. I found out that Daniel was to interview John Elway next but he had unexpectantly had to leave. Everyone was trying to find a player that would be available with their busy schedules. There was a reason John Elway was supposed to be there for us but alas out the door walks Demaryius Thomas to shake Daniel’s hand. They quickly got down to business and the interview ensued. This very handsome, fit young man was kind, gracious, polite, and interesting. Daniel rapidly fired questions and Demaryius answered them all. He looked impressed with Daniel’s knowledge of the game and his maturity. When the interview ended Daniel showed his real interviewing chops and squeezed in several more questions. They talked fantasy football and Daniel then became the professional in the conversation and the two were joking and laughing. Upon departure Daniel got some autographs, several hand shakes and photos and then he handed Demaryius his new business card. He laughed and gave Daniel an impressed face and said ‘wow your legit’ and Daniel invited him to come on his radio show at the Seacrest studio and come visit the kids at the hospital. Atta boy Daniel. By later that afternoon Daniel had posted the picture below on his twitter feed and within hours Mr. Demaryius Thomas himself had liked Daniel’s Tweet. At the end of their visit Demaryius presented Daniel with an envelope (This is what John Elway was supposed to do, but oh well).
Daniel is being honored this Sunday at the season opener against the Baltimore Ravens as the Broncos Country Hero. We will be on the sidelines of the field and at some point during the first quarter our family will be invited out onto the field in front of everyone (remember the ‘Broncos Go’ song 76,125 at capacity) and they will be playing a short video and part of Daniels ‘Bronco’s Go’ song/video to celebrate Daniel as the HERO we all know he is. I couldn’t be more proud ( and slightly freaking terrified). Along with this honor came an extremely generous donation to a charity of our choice by Sport’s Authority and a lovely gift certificate as well. What a beautiful honor. When I told a few key people about this out of excitement their reactions were all the same, chills, tears and ‘he deserves it’. Yes he does. Every bit of it. The best was Dr. Bob Casey’s response. It’s Daniel’s world and we are just living in it. I love this. I will live in Daniel’s world forever. Of course I will need to, I need to keep carrying his stuff.
As we were leaving I was talking to someone on in the hall about some business of bringing a bone marrow registry as a permanent fixture to Sports Authority field and then we said our thank yous, Daniel had an exit interview and we left. We got to the car and he was all chatty about blah blah blah Peyton Manning and something else. I said what are you talking about. He said I can’t believe I got to meet Peyton Manning too. I said WHAT? He said “DIDN’T YOU GET A PICTURE??????” While I was talking about the registry Peyton Manning caught him in the hall on the way to the quarterback room. They shook hands and Daniel said “Hello, Mr. Manning.” Oy I am so glad he was polite. And he said Manning asked him how he was feeling and knew who he was. OMG, I can not believe I missed this photo opportunity. Geez. I am so getting fired. We hope the photographer with us for the day got the shot (stay tuned)
So I got a call yesterday that they needed pictures for the video montage. About 20 or so…of course I sent about 50. I know I am detailed, have I ever apologized for writing so much. I started going to my photo archives and just like I have never looked back and read these blogs, I have never looked at any of the pictures from the past year. Can you believe that? I have focused on looking forward and I never look back. I could not believe what I was looking at when I stared at these photos. OMG. I had a real break down. I knew what has been going on for the last 14 months. I have been there every second. Living it, every second. In fact writing and documenting it all ( well not all but, everything that I thought would be okay) and now that I am seeing it before my eyes it is like I am seeing it from a whole different perspective and I see just how sick my kid really was. I knew this. I had to have known this. I was there. Did no one take me to the side and inform me exactly what was happening. Did I not here them. Maybe I did. Maybe it is all a blur. I swear I remember it all but why now seeing these pictures did I completely break down seeing the images of it all. Yes there were pictures of rashes and sores and things that are really unmentionable but also those of the crafts we made and the window art and the activities and games we played to occupy the passing time, lots of exercising pictures and the overwhelming amount of pictures of Daniel sleeping A LOT. But what really made me realize how remarkable the year has been was when I realized that throughout everything Daniel was smiling in almost every picture. I don’t know how much was forced and how much was for my benefit. Believe me I have a fair amount of him giving me the middle finger as well but he stayed happy the majority of the time. The kicker was finding enough pictures for the Broncos that didn’t have Greenbay (logos, decoration, clothes, pictures….) in it. This was not easy.
Other than this absolutely nothing has happened this week except mundane errands and this is great. I enjoyed volunteering at Matthews school and pick ups and drop offs and stopping in at the lighting store and now I look forward to the big game on Sunday. I have never been so excited for a football game. Or so nervous. It is like Daniel’s big debut.
Just as we were wrapping up our appointment Daniel got a call from the mail room at the hospital that there was a delivery for him from the business office. How peculiar? They rush delivered his new business cards up to him in the clinic. How awesome is that? He was glowing. He immediately found his doctor in the hall to give him one that was hysterical over it. He looked at Daniel with a serious face and shook his hand. He then remarked with how he was still going to wipe the floor in fantasy football with him even though they both work for the same organization now. Daniel has a hospital legue he is commissioner of that includes a few Doctors, nurses and staff at the hospital.
After all morning medical obligatons it was on to his hospital job. Daniel was expected down in the beautiful theater of the hospital where he would be judging the staff Broncos spirit contest. He would be the ‘celebrity judge’. He was introduced as the Hospital’s ambassador that wrote the hospital’s favorite theme song. When this was announced the moderately sized crowd (a couple hundred maybe) erupted in cheers for Daniel. It was really special. Throughout the silly talent contest there was Broncos trivia which Daniel was excluded from participating in since it was probably unfair that Daniel knew all the answers. The contest was for tickets to the home opener and let me tell you there are some real Bronco fans out there. Sheesh what people won’t do for some Bronco tickets. After some great laughs and the contest was over it was so great to see Daniel so eager to get back to school. He is so happy to be back. He is not afraid to be missing school for appointments and Bronco obligations and is staying caught up I think but it will get harder and harder as the school year goes on. Yet he still has time for lots of video games and even more fantasy football so I don’t feel too bad yet.
The next day the excitement was palpable as he went to school in the morning for a few tests but ready to be picked up at 11:35. He was expected out at The Broncos training facility at 1:20 and he did not want to be late. He takes his job responsibilities seriously and the excitement pulling up to the building was only hampered slightly by the fact that his mother had to drive him. Well who else would be carrying all his stuff. We got there early and talked about who we would possibly meet. When it was time to go in I thought he was going to fall over from excitement but still appeared amazingly calm and collected…oh maybe it was me that was overly excited. Not to meet the players. I don’t know one from the other, but just to see him in all his glory. We walked into the building and I was amazed at how beautiful the whole facility was. We were greeted kindly by everyone we met and Daniel was given his official press pass and lots of fun shwagg. Yep that basically meant more stuff for me to carry. We were given a grand tour of the facility, well most of it. A lot of it was off limits to us. I think Daniel thought it was very cool how secretive much of it was. When he went into the team room (I think that is what it was called) where all the players sit and watch film and hold meetings I truly thought he was going to explode. We were not allowed to take pictures. There was a woman with us taking photos that I hope will get some to us. If you could have seen his face when he then walked onto the field and the whole team was right there in front of his eyes. Larger than life. Literally larger than anything I have ever seen before. They were running right by him left and right and he was like a kid in a candy store. He was then distracted by the draw of press time and the media interviewing Coach Kubiak I think it was. As he took a poised position the person assigned to us as our concierge I guess you would call it for the day got apprehensive. We assured her he would not interrupt and would be very professional. This was no kid that was going to mess things up. But then I got a little nervous that he would overstep the media line so to speak and use the media pass privilege and start asking questions. He didn’t but I could see the wheels turning and him soaking up every moment that was happening. This was his future in front of him. How exciting. Plus how many of these guys get to take their moms to work (what a lucky kid). As all this was happening several people were scrambling around us trying to make something happen. I found out that Daniel was to interview John Elway next but he had unexpectantly had to leave. Everyone was trying to find a player that would be available with their busy schedules. There was a reason John Elway was supposed to be there for us but alas out the door walks Demaryius Thomas to shake Daniel’s hand. They quickly got down to business and the interview ensued. This very handsome, fit young man was kind, gracious, polite, and interesting. Daniel rapidly fired questions and Demaryius answered them all. He looked impressed with Daniel’s knowledge of the game and his maturity. When the interview ended Daniel showed his real interviewing chops and squeezed in several more questions. They talked fantasy football and Daniel then became the professional in the conversation and the two were joking and laughing. Upon departure Daniel got some autographs, several hand shakes and photos and then he handed Demaryius his new business card. He laughed and gave Daniel an impressed face and said ‘wow your legit’ and Daniel invited him to come on his radio show at the Seacrest studio and come visit the kids at the hospital. Atta boy Daniel. By later that afternoon Daniel had posted the picture below on his twitter feed and within hours Mr. Demaryius Thomas himself had liked Daniel’s Tweet. At the end of their visit Demaryius presented Daniel with an envelope (This is what John Elway was supposed to do, but oh well).
Daniel is being honored this Sunday at the season opener against the Baltimore Ravens as the Broncos Country Hero. We will be on the sidelines of the field and at some point during the first quarter our family will be invited out onto the field in front of everyone (remember the ‘Broncos Go’ song 76,125 at capacity) and they will be playing a short video and part of Daniels ‘Bronco’s Go’ song/video to celebrate Daniel as the HERO we all know he is. I couldn’t be more proud ( and slightly freaking terrified). Along with this honor came an extremely generous donation to a charity of our choice by Sport’s Authority and a lovely gift certificate as well. What a beautiful honor. When I told a few key people about this out of excitement their reactions were all the same, chills, tears and ‘he deserves it’. Yes he does. Every bit of it. The best was Dr. Bob Casey’s response. It’s Daniel’s world and we are just living in it. I love this. I will live in Daniel’s world forever. Of course I will need to, I need to keep carrying his stuff.
As we were leaving I was talking to someone on in the hall about some business of bringing a bone marrow registry as a permanent fixture to Sports Authority field and then we said our thank yous, Daniel had an exit interview and we left. We got to the car and he was all chatty about blah blah blah Peyton Manning and something else. I said what are you talking about. He said I can’t believe I got to meet Peyton Manning too. I said WHAT? He said “DIDN’T YOU GET A PICTURE??????” While I was talking about the registry Peyton Manning caught him in the hall on the way to the quarterback room. They shook hands and Daniel said “Hello, Mr. Manning.” Oy I am so glad he was polite. And he said Manning asked him how he was feeling and knew who he was. OMG, I can not believe I missed this photo opportunity. Geez. I am so getting fired. We hope the photographer with us for the day got the shot (stay tuned)
So I got a call yesterday that they needed pictures for the video montage. About 20 or so…of course I sent about 50. I know I am detailed, have I ever apologized for writing so much. I started going to my photo archives and just like I have never looked back and read these blogs, I have never looked at any of the pictures from the past year. Can you believe that? I have focused on looking forward and I never look back. I could not believe what I was looking at when I stared at these photos. OMG. I had a real break down. I knew what has been going on for the last 14 months. I have been there every second. Living it, every second. In fact writing and documenting it all ( well not all but, everything that I thought would be okay) and now that I am seeing it before my eyes it is like I am seeing it from a whole different perspective and I see just how sick my kid really was. I knew this. I had to have known this. I was there. Did no one take me to the side and inform me exactly what was happening. Did I not here them. Maybe I did. Maybe it is all a blur. I swear I remember it all but why now seeing these pictures did I completely break down seeing the images of it all. Yes there were pictures of rashes and sores and things that are really unmentionable but also those of the crafts we made and the window art and the activities and games we played to occupy the passing time, lots of exercising pictures and the overwhelming amount of pictures of Daniel sleeping A LOT. But what really made me realize how remarkable the year has been was when I realized that throughout everything Daniel was smiling in almost every picture. I don’t know how much was forced and how much was for my benefit. Believe me I have a fair amount of him giving me the middle finger as well but he stayed happy the majority of the time. The kicker was finding enough pictures for the Broncos that didn’t have Greenbay (logos, decoration, clothes, pictures….) in it. This was not easy.
Other than this absolutely nothing has happened this week except mundane errands and this is great. I enjoyed volunteering at Matthews school and pick ups and drop offs and stopping in at the lighting store and now I look forward to the big game on Sunday. I have never been so excited for a football game. Or so nervous. It is like Daniel’s big debut.