This morning after dropoff I went to donate platelets. The woman that was checking me in and I got to talking and after a few minutes she recognized my name and made the Daniel connection. Well it was all over from there. She started going off on what an inspiration he has been for her ever since she found out who he was. She was so glad she got to be in his video ‘Broncos Go’ last year, well just her arm. She was standing right behind him and to the right and she was so happy to be in it but ‘darn it all to heck’ she said if it didn’t all happen in one take and only her arm and elbow got in the shot. Too funny. By the time I moved over from check in to the actual donation chair another phlebotomist congratulated me because she was at the game and saw us up on the screen. I can’t go anywhere in that building without someone knowing my kid, but it is for good reasons and I am proud. I got settled in my seat and started going through the movie book for disc to watch. They have the entire Netflix library so usually it takes me forever to decide but I was impulsive for once and just went to the last page and picked a drama called ‘The Ultimate Gift’ it looked like the right amount of minutes and whatever, how bad could it be. Awww shit. 20 minutes in and I am now committed to this movie and enter the cute little pale girl in a hat . Shit, shit, shit. Took me 3 seconds and my gut knew. She had Leukemia and then an unsuccessful bone marrow transplant. Why the fuck do they have this movie here. Now I am stuck in this chair with the headphones on, literally trapped by the table over me and one arm pinned to the table not able to move at all. I start bawling and can’t even reach far enough over to get a tissue from my bag. Screw it the I am in the chair for another 80 minutes of platelet donation and the movie has probably at least an hour and a half to go so I am all in at this point. The techs take notice and decide to leave me alone at this point. I have to admit I am a little concerned at this point about dehydration since I am bawling and not rehydrating becauase I don’t want to have to need to go pee (you can’t get up for the duration of your donation). I am definitely down a quart in tears alone, not including the platelets by now. My platelet donation ended before the movie and let me tell you the movie did not have a happy ending. Well maybe it did but I didn’t really get past the intertwined part with the little girl. Anyway. The great take away from my visit to the donation center is that I found out I can give more often than every two weeks which I will probably start doing once in a while. Plus I learned to choose my movies a little more carefully on future visits.
What craziness the last 24 hours has been. After school school yesterday Matthew had an Ultimate Frisbee match. Game? Match ? Who knows? Is this a sport? A club? A competition. I don’t know. I know I am happy he is doing something fun and athletic (sort of) and social and although it takes a good deal of his time it is the first team thing he has ever participated in and first extracurricular activity also, so who am I to complain?…okay that was a hypothetical question. After his game Rob and I were meeting him at the school for a college readiness seminar that we wanted him to join us at. Yes meeting him after the game. You heard me correctly, thses are apparently not games parents go to watch or cheer on (if any other parents of the Frisbee team are reading this and were informed differently please rat my son out) otherwise of course I would have been there. As we park and meet Matthew up front he is excited to share he scored his first goal (I know nothing about Frisbee rules) and then proceeds to say he hit his head really hard and thinks he may have a concussion. Shit! It is always something. We tough out the entire 1.5 hour meeting, trying to concentrate 1. Because I am afraid Matthew may have a concussion 2. Because it is sinking in that we are in our first college readiness meeting for Matthew YYYIIIKKKEESSS! I also now realize if Matthew does really have a concussion that this 1.5 hour meeting is probably useless and Matthew will remember none of it. Shit! Well tons of good info at the meeting for me at least and I am only slightly traumatized by the closeness of “that reality” around the corner. Rob drives Matthew’s car home ’just in case’ and we decide if we should get Matthew checked out. We have never been in this situation. I guess we have been pretty luck so many years having two boys and no concussions. Oh yah, did I mention no sports played prior. Anyway, upon my own evaluation I didn’t think we needed to go get it checked out, but how could I not go. What if something were REALLY wrong and we didn’t look into it? How could I disregard Matthew’s complaints. Off we went to good old home away from home, Children’s Hospital. When we got there it was packed, I knew when we drove up it was going to be a LOOOOOONG night. As soon as we walked into the Emergency Department my germ radar went on high alert. I told them first thing that we had Daniel (a recent BMT patient ) at home and they put us in a side holding room away from all the waiting undiagnosed patients. We still need to be hyper vigilant for Daniel’s sake. We can’t bring anything home to him. We waited a few hours and as I thought it is possible Matthew has a slight concussion but probably just a good knock on the head. But as we waited a couple hours at the hospital I thought about how strange it was being there without Daniel and how different it was to not be dealing with anything life threatening. I knew Matthew was fine so I wasn’t really too worried. As we were waiting after about 30 minutes and we had been checked in and checked on a couple times Matthew asked me if everyone at the hospital was always this nice to us while we were at the hospital. I thought that was nice of him and really observant. I said yes, they always were. Everyone was always great in all of our experiences in every department we went through in every department (and there were many, many , many). After about 45 minutes in the actual room and Matthew, All 5’ 9” of him squirming trying to sleep in the bed and trying to get comfortable he started to kvetch and complain that the bed was so small and uncomfortable. He said “Man, is this the same bed Daniel had?” I said yes it was for 9 months so you can shut your mouth and not complain after less than an hour. He curled up with the not so soft hospital issued blanket and fell asleep pretty quick until the doctor came in. And sure enough when he did it was a quick examination to determine he had a good clunk on the head and should be fine. I guess it is good to assure us of this. He got a doctor’s not for school the next day and is tired and feeling a bit crappy but will be fine. I am not sorry I took him and would have felt worse had I not taken him.
This morning after dropoff I went to donate platelets. The woman that was checking me in and I got to talking and after a few minutes she recognized my name and made the Daniel connection. Well it was all over from there. She started going off on what an inspiration he has been for her ever since she found out who he was. She was so glad she got to be in his video ‘Broncos Go’ last year, well just her arm. She was standing right behind him and to the right and she was so happy to be in it but ‘darn it all to heck’ she said if it didn’t all happen in one take and only her arm and elbow got in the shot. Too funny. By the time I moved over from check in to the actual donation chair another phlebotomist congratulated me because she was at the game and saw us up on the screen. I can’t go anywhere in that building without someone knowing my kid, but it is for good reasons and I am proud. I got settled in my seat and started going through the movie book for disc to watch. They have the entire Netflix library so usually it takes me forever to decide but I was impulsive for once and just went to the last page and picked a drama called ‘The Ultimate Gift’ it looked like the right amount of minutes and whatever, how bad could it be. Awww shit. 20 minutes in and I am now committed to this movie and enter the cute little pale girl in a hat . Shit, shit, shit. Took me 3 seconds and my gut knew. She had Leukemia and then an unsuccessful bone marrow transplant. Why the fuck do they have this movie here. Now I am stuck in this chair with the headphones on, literally trapped by the table over me and one arm pinned to the table not able to move at all. I start bawling and can’t even reach far enough over to get a tissue from my bag. Screw it the I am in the chair for another 80 minutes of platelet donation and the movie has probably at least an hour and a half to go so I am all in at this point. The techs take notice and decide to leave me alone at this point. I have to admit I am a little concerned at this point about dehydration since I am bawling and not rehydrating becauase I don’t want to have to need to go pee (you can’t get up for the duration of your donation). I am definitely down a quart in tears alone, not including the platelets by now. My platelet donation ended before the movie and let me tell you the movie did not have a happy ending. Well maybe it did but I didn’t really get past the intertwined part with the little girl. Anyway. The great take away from my visit to the donation center is that I found out I can give more often than every two weeks which I will probably start doing once in a while. Plus I learned to choose my movies a little more carefully on future visits.
0 Comments
Today was a monumentally great day in the realm of hospital days. Yes you heard me right, hospital days. I know it is Yom Kippur, the holiest day of the Jewish year but a) we have had one of these appoinments for 8 weeks b) there are a lot of germs at synagogue and c) as one wise Doctor said today, it doesn’t matter how or where you pray G-d knows hears you wherever it comes from. I believe that whole heartedly. When I think of where we are compared to last year, I know G-d has heard us all along and we are right where we need to be today and G-d’s blessings and everyone’s prayers has brought us to this place of strength today and I know we will surely be inscribed in the book for another year but this year in good health.
This morning started bright and early with a very big test that would determine a lot. Daniel’s eyes were infrared and so that the vessels in his eyes would show up in photos. These pictures are really beautiful from where he was affected by the CMV virus he no longer has any activity. All those treatments did their job and the systemic treatments have kept it away. He is disease free long enough in the eye and all clear. He will always have the scars but they do not really affect anything as far as his vision. 1 big result that leads us to the clinic at children’s next door that we have been waiting for now because of this eye result. We do need to come back again for pictures again in six weeks but not with injectable. Before leaving Daniel peed and was thrilled to report it was totally neon colored (as a result of the injected dye). Pretty awesome! BUT ONLY if you have had warning that it will happen. Without warning it is absolutely frightening. So for the record with so many different treatment in the past 18 months Daniel has peed just about every color of the rainbow, and it was him that had made note of that people (obviously, he is a teenaged boy). Off to the clinic and we started weekly infusions and had a great visit with favorite (psychologist/fanatasy footballer) Bob. Bob makes everything better for both of us. I have been very anxious needing to address the fact that Daniel sleeps a lot after school and has very sore legs. The nurse and Doctors hear my c oncerns and understand that this is where we were just before diagnosis with symptoms and feel it is important to address every complaint. It is difficult to tease out what is regular adolescence and deconditioning and what is disease. They will do everything to help find out so we add more tests to the docket. He did some power walking sprint test with Kristen the P.T. to assess his legs and impressed everyone watching in the clinic. Again they are not used to seeing such physically healthy (big) kids running through those halls. But now what we have really been waiting for. And waiting for a very very long time. Because the eyes are clear and he has had over 8 weeks of negative blood results for CMV we are stopping daily home treatment of I.V. Foscarnate. This is HUGE. I can’t tell you how happy we both are to stop this hours long treatment and pre and post hydration regimen that controls our lives. This really is a big step toward moving on. It also means that we will now hopefully now start to see his numbers begin to climb on their own after this toxic shit is out of his system. We hope over the next month. This will hopefully lead to the need for less GCSF (neupagen) that is helping boost his numbers and consequently his energy. I will still need to draw his blood at least weekly and maybe more to monitor all his levels to see his need for this. He is also being lowered to CMVIG infusions once every 2 weeks. This is the antibodies to help support against CMV until he has enough on his own in his immune system. He is soooo close. While spending the day at the hospital he fit in a great D[P]R show and was shown off to some visiting donors to the hospital. He proceeded to shine of course. He was going to be there anyway for the day so he scheduled the show for today instead. He is realizing how difficult it is to miss school these days and is trying to be efficient but also sees it is important to be responsible for his obligations. He takes his radio show seriously as a job commitment. Then we were off to leg/ankle x-rays. These were more as a ruling out measure to ease our mind. Especially because none of his numbers are indicative of anything more than strength and reconditioning needs that they are thinking it is but that is why Children’s Hospital is the best at treating the whole family and not missing anything. Again after the road we have been down they will not leave one stone unturned and believe that a mother’s intuition means a lot. I am grateful for that. We got quick results that his xrays look 100% fine for what they were looking for. We are hitting it out of the ballpark today. The plan for his legs is to continue the exercise and strengthening and continue to push through the pain and get to the other side. Tough for me to watch and tougher for me to push him through but the end result is the goal and he has big goals to meet. He has basketball season, ski season, a trip to Israel requiring lots of walking and a long bright future ahead. We are heading right on into it with a much more medically lightened up schedule as of today. Woo hoo. I leave you with this adorable piece of art from one of the walls in radiology at CHCO. It has always been one of my favorites. There is so much great and fun art on the walls around the hospital but this one always makes me smile. After Daniel’s day at Broncos training camp he was expected to write an article as the Jr. reporter for the hospital. I asked him immediately after his visit for his plan and timeline as to when he was going to write it. Knowing Daniel is a procrastinator I didn’t expect him to write it immediately and thought he would want to think about his day a bit. I encouraged him to at least jot down a few notes so he had something to go on. I new he didn’t take any notes during his interview and just hope he soaked it all up and could reflect on it in words. I had no real expectations. I did not know what angle he would take or how his writing skills even were after at least a year of not using any of these skills. I did know this was a topic he was passionate about so I wasn’t too worried. What I was concerned about was him getting the work done and submitted on time and keeping it to a reasonably short length. Daniel is not short on words when it comes to telling a story ( I have no idea where he gets this from). After a day or two I knew it was due and asked him again how it was going. He decided to get to work. Not long after he was working away and I waited with excitement. Never did I expect what I read. He trusted me to edit it, although it needed very little correction, maybe one or two words if at all. After reading the first paragraph I was myself in awe of not only his writing skill, but his talent to convey his every thought and emotion. I quickly realized, my child had found his calling to be in the field he wants to pursue at a very young age. What a very lucky young man. I could tell you all about it but why not let you just read it yourself. It is on denverbroncos.com under jr. reporter.
Jr. Reporter article: http://www.denverbroncos.com/news-and-blogs/article-1/Childrens-Hospital-Colorado-Jr-Reporter-I-was-in-awe/e489afb9-b497-430a-b016-9b39fc00cd58 Also make sur you watch the video at the top of the screen. He is adorable but his excitement and comfort is not overshadowed by his professionalism. What a kid. At the bottom of the article is the new version of Broncos Go! 2015 It was rerecorded and reshot to update it for the new season. When we stood on the field I know Rob cried as he watched the tribute to Daniel. I didn’t. Surprisingly I took it all in and stood proud by my family and watched the crowd and the screen and reflected at where we were exactly one year ago. We were fighting to get his song played at the game opener but were turned down by everyone, for multiple reasons. I just looked in wonder and thought about how far we had come in a year. His health is better every day where it was so far from that and full of so many unknowns at this time last year. We were fighting an uphill battle to get the Broncos to hear his song and his message and now we know first hand that it spurred a 10 year partnership between the Broncos and The Children’s Hospital that will help children and their families’ spirits beyond measure. So the pride I felt was enough to fill those stands at Sports Authority Field. This was the video of Daniel’s honor. Broncos Country Hero: https://www.dropbox.com/s/piqzllo8wpdql5c/Broncos%20Country%20Hero_9-13.mp4?dl=0 Along with the honor, Sports Authority has given a generous donation to a charity of our choice. Daniel chose to give the donation right back to The Children’s Hospital. Obviously he said. He wouldn’t be here without them. 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. In a weeks’ time we have been busy, busy, busy. All with good things. Most importantly last week Daniel came off yet another oral medication. This is a big one that will allow us so much more freedom in our days for planning and sleep and just normalcy and best of all it allows Daniel to eat grapefruit again. He couldn’t eat it for so long and really did miss it. I am still so worried and concerned about Daniel’s ankles and legs being sore and hurting but I know this is soley due to his deconditioning and he is so inconsistently exercising. Busy week of school and appointments and some fun with Broncos. Daniel and Dad went to a Thursday football game that we were given tickets too by a friend. It was so nice to be given a chance to go. They had great seats and enjoyed the night out together. Although it made for a tough day at school the next day it was all worth it for a night at the game of course. Saturday was exciting for me as it was my first time getting to volunteer at the Love Hope Strength. The organization responsible for obtaining over 100,000 registrants onto the bone marrow registry. I hope I get to have a long relationship helping increase these numbers and I did by one today as I added myself to the list. Along with many others. I am honored to be on the list and would be privileged and blessed if I was a match to help someone who needed to have a bone marrow transplant. Could you imagine the odds. I also had the honor of working at the Broncos Health Fair where they are now partnered with Children’s Hospital Colorado. I hope this union of LHS and CHCO continues and grows as well. After a long full morning Daniel and I went to the Taylor Swift concert where we were gifted tickets from the organization Do It For The Love. We were very blessed to be joined by Chris and Cody from Seacrest Studios which made so much possible in the past year. Including the tickets. It was a fabulous night out and the concert was wonderful. One poignant thing that stuck out to me about the night was when we were going to find our seats we were in disappointingly placed seats (to say the least) when I made a suggestion to Daniel that he put on a BMT mask (I always carry one) and we see what we can do to maybe move, he STRONGLY (I am putting this kindly) said “you put on the mask, I am not a charity case.” I was not upset at all. Again another reason I am so proud of my strong son. I feel so lucky he is so proud. We then rushed over to a fabulous friends bar mitzvah party and I was so happy to just be part of it for the final hour. Mostly to just be able to share with friends and community that have been so wonderful to me. I share this picture of my angels that have been there for me helping me this whole year . I am glad I got there to celebrate a happy moment with a friend and share her joy. So much joy was brought to me as well to see Daniel join in and dance with his friends again as they did and haven’t done in so long. Once again he couldn’t stand the fact I was spying on him but it was with such pleasure to see him happy and doing normal fun things with his friends, like old times. Then a very special treat, Sunday morning we drove to the mountains for a change of scenery. We have not done this for well over a year (except our great fishing day). We have not been able to be this far away from the hospital with Daniel and now that we can Rob suggested we go for lunch. It was a nice day outing. Minimal car fighting and a beautiful day. It was a nice change of scenery indeed. Daniel’s legs were too sore for too much walking but little incident otherwise and it was super nice to just get away. Maybe next time we will try to do a relaxing overnight. Now that will be really nice. What an exciting day we had. We were asked to be the hospital’s guests at the 2015 Bronco’s Kickoff Luncheon today. Off course it was an honor. We enjoyed getting dressed up and heading to Dove Valley, the Broncos new and absolutely phenomenal training facility. The excitement was palpable and it was mixed with nerves as well for Daniel. I was just happy for Daniel to be at this place that he was healthy enough to go, that he was well enough to be amoungst all these people and without his mask and get to eat the food (whatever it would be) and to possibly meet some football players. I was also nervous about falling on my ass in my heels and tight skirt of which I haven’t worn in forever and embarrassing Daniel. I think this is what he was most nervous about. He had already taken me shopping to pick my appropriate dress. He had approved my hair and overall look before leaving the house and I had had a phone camera training and arm length list of do and do nots to abide by. I was so worried from all the warnings about embarrassing Daniel in front of his football heros that I was pretty sure I was going to just show up and sit in a corner, or quite possibly just waste the great hair day and sit in the car. Thank goodness he approved and let me out because it was damn hot out today. Upon arrival and meeting the lovely Christy (our hospital boss) we entered this amazing place. Got our name tags and went in. Daniel’s eyes were like saucers. He wasn’t really to interested in the first auction items. Could it be because he is a snob, or that he already has a personalized Peyton Manning Jersey. Do I worry that he didn’t get as excited as most of the grown men in the room standing in line to take their picture with the Lombardi Trophy because he shrugged and said ‘eh , you can’t hold these and I already have so many pictures already’- Geez has he peaked too soon. Well he took a picture. But then the next stop was some alumni signing autographs. There was Billy Thompson and Karl Mecklenburg sitting at a table. Daniel remembered that way at back last year Billy Thompson was kind enough to visit him during his first round of chemo in the hospital (6-30). He was so kind back then and wonderful to Daniel. Daniel waited his turn and went right up to him, stretched out his hand and said I am Daniel Hailpern. Do you remember me? You came to visit me a year ago in the hospital when I had Leukemia. Billy Thompson put down his pen stood up and said ‘Oh My G-d, I do, look at you’ he gave Daniel a hug congratulated Daniel on how great he looked. Then he stepped away from his signing table and gave me one of the greatest hugs I have ever had and kindly whispered what a great job I did. I thanked him for how meaningful his visit was to us and how it mad such a difference to Daniel. He took a lot of time with us that day and it was never forgotten. At this point I was teary and in fear of my makeup running all over the place and I tied really hard to hold it together. Not surprisingly, Daniel skipped the next table which was the cheerleaders.
We made our way to our table at Daniel’s request since his ankles are still really bothering him (admittedly I was grateful, 20 minutes in and these heels were not a great idea). At the table Christy started introducing us to other members of the Hospital Foundation and all of them had nothing but wonderful things to say and praise for Daniel. One gentleman and I spent more than a few minutes talking, some about his child and how at a young age they had ALL (Leukemia) after congratulating me for Daniel’s success it hit me hard when he took the time to acknowledge how hard it has been for me. I don’t take the time to listen to this very often and this time Daniel was hearing it a bit too. Again the tears started to come a bit. I tried very hard to not cry today. I knew this was all about Daniel enjoying himself. Then one of the heads of the Broncos came to introduce himself to us. He first shook Daniels hand then mine and knew who Daniel was immediatly. He spoke directly to Daniel and welcomed him warmly and said he has been waiting to meet Daniel for a very long time and was so glad he could finally join him here today. He wanted Daniel to know that he has been following Daniel’s story for a long time and that Daniel is sort of famous around there. He then told Daniel that He is part of the reason that the partnersip between Children’s Hospital and the Broncos has happened and that Daniel has been a huge inspiration to many people in the organization. Well that was it for me. I buried my face in my purse looking for tissue trying not to embarrass my baby. Meanwhile Daniel just stood taller and shook this man’s hand and said thank you for giving me the opportunity to be here. Oy so professional. How proud was I in that moment. He is grabbing his moment. He deserves being right where he is. I hope every person who encounters Daniel realizes the hard work he has had to do to get where he is today. We enjoyed lunch and he chatted with a Bronco or two. I know he will have several more opportunities coming up to meet more and more in depth as well. He contained himself and didn’t overstep his boundaries today with what he wanted to do (ie. Chase down Peyton Manning). I was proud of how he handled himself today and I was proud that I didn’t fall or fall to pieces. I hope he was proud of me for that at least. |
Archives
July 2016
CategoriesAuthorNadine |