http://espn.go.com/blog/denver-broncos/post/_/id/15788/daniel-hailpern-a-15-year-old-cancer-survivor-hosts-nfl-show-at-colorado-childrens-hospital
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It’s amazing watching your kids grow and learn and make choices. Even when they are not always the best ones, because as we all know even though it is tougher to watch those, it is those ones we know they are learning more from. I am watching Daniel grow and learn so much from this great opportunity he has been given as the Children’s Colorado Denver Bronco’s Ambassador. He got to have the wonderful opportunity to meet and have Jeff Legwold from ESPN come to the studio and spend some time with him and interview him last week and a video or article is expected to be on ESPN tomorrow (Tuesday). During this visit Jeff watched Daniel conduct his show and it just so happened that this show was not like any other. This particular show took on a very different tone all together. I am not really sure why it did, but it did and that is just how live broadcasting goes right? Daniel and Mark Haas (his sportscaster, cohost buddy) are normally very competitive anyway, but today was just dang heated. Heated and downright dirty at times. They were opposing and almost arguing and not fun and funny at all. I didn't enjoy it one bit actually. Although I was very impressed that my boy held his own and although somewhat defensive at times was more composed and prepared to debate on a topic he knows than I certainly could ever have been. Daniel held his strong opinion and maybe it was naïve (considering it was against an adult professional sportscaster) but it was his and he was sticking to it. He is very knowledgable about statistics and predictions and all that stuff but then there is professionalism and that he is still learning. He is always, ALWAYS appropriate, and would never overstep his boundaries or be unprofessional but he is still not sure of how to balance his position at the hospital. He knows he is representing the hospital and the Broncos now but knows what he believes. Now what do you do when those two things do not always match your vision or expectations. This is a lesson in integrity. I say he needs to follow his gut and find that balance and he will find his way professionally. He will find his voice and continue to grow and I am enjoying watching him learn. It is painful to watch him stumble but I know that these are the hard lessons that will make him better. He was not happy with some of the choices he made but this is something he will have to live and learn from. Again, I have to remind myself that this is his career path he is forging and one I know absolutely nothing about. I can only offer my opinion and give my encouragement and maybe some motherly advice along the way, like use a little more inflection or wear the blue shirt??? I know he thinks these are huge accomplishments, and as I make sure I write them all down and keep a journal so that when he is ready to create a resume for later, he can have them all at his fingertips. At the end of the day I will be there to edit his resume and give him a hug at the end of his interview and say good job but I know that at the top of the list of the biggest accomplishments isn’t an ESPN interview at 15 years old (sorry Jeff Legwold), in my eyes the biggest accomplishment is that he survived Cancer and came out of it with a career. I don’t write as often anymore. I don’t know why. It is not because I don’t have as many thoughts swirling around my head. That is totally not it. Just ask my husband. It is just there is not as much information on Daniel I guess that needs to be shared in a timely manner like it used to and this is becoming more of a tool for me to express myself about what I go through on a day to day basis. I think it is becoming more of my blog now more than Daniel’s blog and that is kind of representing how our life is becoming and you know what? That is fine by me. Let me share an example of exactly what I mean by this. So I think I have mentioned this before, but Daniel was told he is not allowed to play soccer yet. One he really doesn’t have the energy or is in the greatest shape for it yet and two really should not head a ball or get hit really hard…just in case. His platelets are still sometimes still very low and he is not expected to heal or recover well from injury if they should happen. These are the variety of reasons for not playing so Daniel has chosen to assist coach the middle school team which is great. He is involved and active with that. But the other afternoon he calls me and says bring him stuff (shorts/shirt) he needs to help sub for varsity soccer because they are short a guy so if he just sits on the sideline then they can have a chance to step out for water, otherwise the players don’t get to come off the field at all. Fine whatever. Gorgeous day, enjoy the fresh air. This makes it my third round trip to school dropping stuff off that day anyway but no worries, what are moms for right? So I come back to school at, I don’t know 4:45, 15 minutes into the game. I thought I would come watch the boys play and enjoy the afternoon outside and as I walk up to the field all parents eyes turn to me approaching- this is not good- what, what did I do? Is my skirt tucked into my pantyhose, what? “Daniel is doing GREAT!!!!” WTF! What am I supposed to do know, run on the field and pull him off? He already gave me the look earlier in the day when I took his shirt and shorts that he asked for to his classroom and made an ‘appearance’ in front of his friends. The team was short of players so Hailpern IS IN for the whole FRIGGIN game. No breaks either. I look up and there he is. I only recognized him by the big grin on his face. His choice. I know how sore and tired he is going to be. I know the consequences. I have my finger on #4 speed dial to the 7th floor clinic. I put on a fake grin and actually pay attention to my first school soccer came in my life. He did okay. I know he was exhausted and sore. And then as the other players charged towards hi my held my breath and saw how he did his fair share of hitting and shoving. He took one hard hit and again all eyes were on me. I shrugged it off and jokingly said “Send that kid the bill from Children’s”. I’m not sure how that went over. Well Daniel stayed in the entire game and afterwards came to me and had a kind of guilty look on his face. First thing he said was “that was so much fun, I am playing all the rest of the games for the season, they need me” and then he asked me to promise to not tell Dr. Craddock about it. What I took away from this was that he is pretty much on his own now. He feels physically good enough and his numbers and blood tests are supporting this and he feels he can do it and he can recover from the exhaustion or deal with the consequences. He is making these decisions and getting back to his life and that is fine by me. Last night was the Children’s Hospital Gala. I have been looking forward to it because I like a having an excuse to get all dressed up and fancy and especially to support such a good cause. Last year we were invited as guests by our friends Michael and Anne Marie Foonberg who sponser a table for their lovely children. Annie has been a wonderful friend and was so supportive last year and knew that even though we were in the total thick of it I needed a night out from the hospital. She pushed and encouraged me last year and it was difficult to pull it together but we did and it was an amazing night last year. My wonderful friend Ronit came to ‘hang out’ with Daniel at the hospital and on that night I met a new friend Emily, through the Foonberg’s that has also been through quite a year of change. As I was getting ready this year I decided to call Emily to reconnect and see how her and her son were doing and she was also going to the Gala again. I was so glad to get to do this as she returned in a much different place this year as well . Both of us in so much better places with our boys. She commented on how glad she was t see me without my hospital band. Remembering going back to the hospital room after the gala last year was hard. This year instead of being guests we decided to co-sponser our table with the Foonbergs and show our support for the hospital and we invited our own friends that have supported us along the way. It was a wonderful night that we got to share with our friends but this year was so very different from last year. We were in such a different place last year. I was getting ready in the hospital bathroom, we didn’t know what would happen and if Daniel would even have a transplant let alone if it would be successful, I was 20 pounds lighter and my worries were so much greater. I didn’t smile then really and I am not sure if I cried more then (the jury is still out on that one) , but it sure feels like a thousand years ago. And I thought about all of this as I got ready to go. I texted Ronit to remind her about that night and sure enough she had her own wonderful memories of how special that night was spending it with Daniel while we were gone. She immediately came up with the idea to take him with her for the night and her family because he is part of her family she said (and I was crying again). During the night I got pictures of Daniel and Ronit and she said she has created a new tradition. This is fine by me. Daniel was supposed to be at the Gala but chose to not be. It was probably a wise choice. He actually probably would have been bored, and not liked the formal, but who knows, but actually he was there and not only in our hearts and minds because almost everyone that I encountered and was introduced to already knew a bit of our story and certainly knew of Daniel. It was wonderful to spend the night singing his praises and telling of his accomplishments. The night is meant to celebrate the hospital and raise money for it and that it certainly did. They honored a very deserving family this year and although I feel Daniel has accomplished so much and is very deserving I am reminded of all of the other families that have their own stories. I know of the families that battle for years and years and we have only been attending this Gala for two years. Last year we were invited guests, this year we cosponsored a table, next year …not sure and who knows maybe Daniel will be honored one day. Actually by the sounds of all the people I talked to and meet Daniel is honored everyday. Last year there were more people we knew but this year there seemed to be more people that knew us because of Daniel. In fact time and time again I was introduced as Daniel’s mom and you know what …That is FINE BY ME. This weekend was just strange. Strange because Daniel wasn’t here. He went to a class trip away with his grade to a camp just outside of Denver. He went on the condition that he must use his best judgement of the conditions there and if he felt it was okay to stay there the whole time. He had the option of returning home early at any time because there were other parents coming and going at various times retrieving kids for various reasons. He was told to stay in contact with me frequently and to let me know how he was doing and so that I could remind him to take his medication and keep up with flushing his lines which he would still have to do on his own daily. I did what I could to pack up all his stuff and everything he could possibly need in case of an emergency. Of course the phone calls and texts never came so my anxiety was high all weekend. Of course he blamed it on poor reception. Of course he did. The only time I heard from him was to say he needed oxycodone for pain which freaked me out. He was in pain from the other night of overdoing it at a trampoline park he went to. Well that was totally something I was NOT prepared for. He hasn’t taken oxy in months and I certainly wasn’t going to send that out to a weekend trip just in case. I suggested he find some ice and plastic bag and a Tylenol if it got bad and that he could come home with the next parent coming this way. I didn’t hear from him for two more days so I guess things got better. Believe me it took EVERYTHING in me to not camp out near where he was and see how he was doing but I think I did a fine job and just let him be. He came home and seemed to be just fine. I think he took most of his medicine and flushed his lines most of the time. I am glad that he took his own water because he reported the supply there was both poor quality and lacking and at least he was prepared so at least he had that going for him. Normally I would have been upset that he didn’t share his stash but this time I was glad he took care of himself. I am glad he stuck it out and didn’t come home. It was his chance to be part of his class trip and I think he will be glad he went with them. Meanwhile I got a chance to have time to myself . And today I had a wonderful day with one of my best friends Karen. Something I don’t do enough. We laughed and cried and I remembered what it was like to just have a girlfriend and spend time together again. I missed those days. It was nice to not have to worry and rush back to an appointment or needing to get back to do anything for the boys. Thank you Karen for a wonderful (but emotional) afternoon. BUT alas the weekend is over and we are ready to head into another typical busy week of ….well typical busy week. But again all good.
I am excited to report we are now scheduling all one year post transplant appointments for Daniel. All the appointments that were done prior to the bone marrow transplant November 12th like Neuro-Psych, heart, lungs, mri, xrays, uerology, radiology, hmmm what other organs am I forgetting. Everything he had poked and proded before will be checked again to see see what has changed. We will of course hope that everything is fine and expect that some things will have changed as expected, many have seen no change and thank G-d some have changed for the better. I know most of all we are in a great place overall but will still hold our breath on some results. The big ones will be the bone marrow aspirate of course and the MRI and a new test that will be a full body scan that they haven’t done before that will look for anything new. Again of course you want to know everything but then you ask yourself DO YOU? It is like asking do you want to know your future? Well you look at things different after the past 16 months we have had. I look at today, not tomorrow. These past two days have not only been great as far as numbers for Daniel but as far as his business life he has been on a roll. Daniel has been almost two weeks off of foscarnate and his body is showing it. He is flushing its toxicity out of his system and his white blood count and and neutrafils are higher than they have ever been. He is on his way to normal range and his own established immune system without support. This is so exciting for me to report. Of course these things are exciting for me but more exciting for him is his professional work he is doing. He has had the past two days of school but no rest for the wicked as they say. Last night he sat in with Andy Lindahl with KOA 850 radio on his Broncos Primetime radio show and did a few segments on his show. He was invited to do more and met and impressed both yet another Broncos starter and a reporter from ESPN that is interested in doing a story on Daniel. Of course Daniel is thrilled about this. He is impressed with Daniel’s story from what he has heard but was even further impressed when he actually met Daniel and saw his strength and confidence. Today he had Todd Davis on his D[P]R at the Seacrest Studio. He met Todd at the Broncos kick off luncheon several weeks ago and they have been in contact since. This young man was such a gentle, humble soul and Daniel welcomed him to the studio family with joy and humor and so much pleasure that as the acting role as Ambassador was surely fulfilled. I hope he will not only go back to his team mates but run back and tell them that they too need to make an appearance on the D[P]R show. What a great couple days off school for Daniel. With all that is going on he is taking it all in and actually learning from each experience. I love that he is using each one of these moments to grow. You go Daniel. His playbook is filling up as he is booking with the pros.
Well, well, well what a weekend it was. It was full of friends and food and that equals fun for me. There were friends and hugs around every corner and I just felt loved. I got several hugs from both of my boys, which is not a typical occurance so what could be better. Rob surprised me with a wonderful dinner with several friends which included lots of laughs and smiles. I am finding it easier and easier to find my smile again and hope that one day soon it will be back fully. Thank you everyone for my birthday wishes it sure did make me feel loved. It is amazing how much sweeter every celebration is now.
I feel like there are truly no words to describe how it feels to be in a place where over 10,000 people come together one one night for the same cause. When G-d provided a beautiful weather night and it was an amazing night of celebration and acknowledgement and memorial at the same time. The highlight moment is different for everyone I am sure but mine was surely during the lighting ceremony itself. At first when all are gathered together 10,000+ strong in silence for a moment to recognize those that have lost their battle with a blood cancer there were many yellow lanterns lit. Too many. Way too many. That is the goal of this night. To reduce this number and that is the goal of this night. The mission of this group. United with a cause. This group raised $1.2 million dollars last night for the Rocky Mountain Region to help towards this goal. I hope one day to see less or no yellow lanterns. Then it was time to light the red lanterns for those supporting those fighting . All the friends and family that have been there through it all and supported, loved, helped , funded, held hands, fed, cried, laughed, read, shopped, hugged, played, danced, waited, prayed, feared, and listened along with every person that has a blood cancer lit their lantern and the sky glowed red with the power of love. Then came that moment that was the most special of them all. That moment reserved for the real super heroes. The survivors. The selected star of the walk got up and shared her difficult journey and it's phenomonal success today as she called for all survivors to raise and light their white lanterns with pride. Although I wish Daniel was beside me, I know he was in my heart, but instead he was with his friends where he wanted to be. I hope he fely proud and strong raising his lantern. At that moment I looked out on the crowd and I was in tears. I was supposed to be in tears of joy but for some sad reason I realized I was in tears because in that sea of lanterns I saw so few white lanterns. So few. And I was sad. I was sad that I was sad and sad that I wasn't feeling happy to be there like I wanted to on this night. I wanted to be so happy for us and so proud of our accomplishment for us and yet it turned to sadness for a few moments of all the lost white lanterns. and all those that are not strong enough to be there. It made me think of every person there and that every one of those people have a story just like ours. Not like ours but one of there own. How many blogs like mine are out there? I thought about this the whole 2 mile walk how every family has been on their own path and they all have stories to tell. I am so proud of every one of them. I am so determined to make next year's walk bigger and better and more of our own for Daniel. Next year we will have our own team shirts (Thank you Cindy) and next year we will have a food truck or something and a strong team and our family is going to come into town and take Wash Park by the storm. But tonight was really for Rob ans I about celebrating and enjoying where we had come in a year with Daniel. The walk was just over 2 miles around the beautiful park and lake and during that time Rob and I and friends and I spoke of several different thing. Mostly though it was what we accomplished over the year. Mostly Daniel of course. Last year at the walk we talked about so many unknowns ahead and Daniel was so, so sick. We were so unsure about the future. If there would be a future. I spent so much time telling Rob about the walk last year but until he was here to experience it , he didn't understand it's grandeur. I now realized that until you are somehow affected by this disease that you just just don't know what is going on out there. I guess it is the same for any disease. We went through this two years back with breast cancer. Once someone in your family is affected it is like diagnosis start coming out of the wood work. This year Hannah from work and her family joined us as well to walk for her little brother Sam. We all walked for Sam too as Sam is another diagnosed this past year with a blood cancer. When you see 10,000 people strong in front of you at Light the Night or 1 million at Race for the Cure it is powerful. it means a lot. What meant a lot is that Daniel's friend Hannah honor's Daniel, dedicating her walk to her friend. What means a lot is that Daniel's friend Aaron came with us and walked the whole way with a cast and a broken leg and today he is back on crutches and feeling the pain. What means a lot is that my girlfriends that were way to busy last night with a million other things going on came out last night to support us and Patti's Team. They are certainly our team-our red lantern. We all finished the walk strong and proud, happy and hopeful for the future and I am ready to devote myself to a year of involvement of making next years walk big and better. I can only imagine how amazing and full this next year will be. |
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