Off we went! The four of us escaped under the radar to test the travelling waters. It has been a very long time since we have been on a plane and the doctors gave us the okay so off we went. I will admit it was an excuse to avoid the Thanksgiving holiday and home for the holiday troubles but I certainly was not short on Thanksgiving gratitude. Not a moment of thankfulness was lost in my heart thanking our angel donor every moment for what we have been given. I was grateful every moment of the few days being given the opportunity to be having the opportunity to be having the opportunity if you know what I mean. The trip itself was to serve two important purposes: 1 was to give Matthew his 17th birthday gift which was to drive real luxury vehicles on a real race track and 2 was to eat a very special meal at a very special restaurant. Rob and I have been going to this very fancy place for almost 20 years. We got engaged there and have been there every year at least once if not more. Several years ago we treated the boys to this very grown up dining experience and it made a real impact on them. I never really knew just how much until it became a significant motivational goal last year in the hospital when Daniel couldn’t and wouldn’t eat. Back when he had a feeding tube and wouldn’t eat and then when he eventually tried so hard to eat but couldn’t we talked about the day when he would be able to eat again and all the dream foods and when all the miserable food restrictions were taken off what was the one thing if there was anything in the world…ANYTHING? We could get him? Of course at the point we would have flown to the ends of the earth for our baby. He said MICHEAL’S GOURMET ROOM. Done. Well today was the day. And my friends when I tell you the amount of food that they serve and the amount that this kid was able to put away you would not have believed your eyes. I am including several pictures of him enjoying several courses of this meal. We told his story (at least this part) to the Maitre’D that has been at Michael’s for 30 years and he broke down crying. He pulled the table away from us and asked if he could hug Daniel. We all teared up and he was gracious enough to not allow us to pay for our meal. This is not a cheap meal people, there is a reason we only go there once a year. This beautiful man was overcome with love and prayers for Daniel the rest of the night and could not get enough of his new ‘fighter.’ He gave Daniel his phone number and asked him to please, please, please call him often to let him know how he is doing so he can continue to pray everyday for him. What a beautiful man this was. I have a feeling we will not only stay in touch but that we will revisit and make a new tradition with the kids. Matthew made me tear up when he said that he hopes he is lucky enough that he will be able to bring his children there one day. Please G-d. Tfu tfu tfu. Overall we had a wonderful few days away as a family. To say it was overdue is an understatement. We were a family that used to travel frequently. Not having a get-a-way for 2 years has been difficult. This trip was filled with lots of fun. We saw some fun shows. Saw Matthew do something that is a dream of his. Daniel hit the Lululemon jackpot at an outlet on a black Friday clearance sale. He equated his Lululemon sale to Matthew’s racecar experience (I thought that was hysterical). I was a very happy mom because they all let me take lots of pictures which makes me happy. I was very concerned about Daniel and his soreness from after being on the airplane for less than 2 hours. Concerned because of our upcoming trip next week to Israel. 2 hours compared to more than 12 straight terrifies me. Not to mention the day after a bone marrow aspirate. Rob and I discussed postponing his procedure but Daniel said absolutely not. H will not risk soreness for delay in diagnoses or spread of disease he says. Even two weeks he says makes a difference and he says he will take Tylenol and deal with it. I can not and will not argue with him for a second. I whole heartedly agree with him. Again I believe he calls the shots and he needs to live his life the way he wants too. This is how we spent our Thanksgiving holiday together. Last week (Tuesday)we received an email that CBS sport’s national channel got wind of Daniel (probably through the ESPN articles, I assume) and wanted to do a small piece on him for their weekend show. It is an all woman led sports talk show called ‘We Need To Talk’ of course Daniel was all in and willing but we needed to work quick to do some kind of remote interview and, oh yah, one other thing they needed the footage submitted right away and Daniel doesn’t want to miss any more school. Oy, what a diva! But seriously, we were in the processes of trying to make things work the best we could when all of a sudden-SNOW DAY- with no real snow. It all worked out beautifully and we got a chance to go into the studio and have some great time shooting. It turns out as natural as Daniel is running his own show, he is not as comfortable when he is being interviewed. He had a very hard time talking easily when interviewed and on the spot without a one on one sit down. And me , forget it. If I never have to be in front of a camera it would be too soon. I can talk about Daniel all day long but in front of a camera- ugh, no thank you. I don’t know how he loves it all so much. Mark had some amazing words to share about Daniel and the studio but unfortunately it didn’t make the final cut. I was sad about that, but I understand they were only using a minute or so and we had so such to choose from. In the end, even though Daniel was very nervous about how it would all turn out, he was very, very happy with the final result. I hope you are able to view the video of what they led into the segment saying was a very inspirational story for the holidays. https://www.facebook.com/nadine.hailpern/videos/10208245754485246/
First I need to start with posting Daniel's facebook post that he put on his timeline this morning before school. It totally made me stop and cry and think about how much this all must mean to him. This is his perspective. This was the cake we had made for him on the day of his transplant. I am so happy that he is thinking this way. Healthy body, healthy mind. Today was November 12th. Daniel's 1 year post transplant 'new' birthday. One we will always recognize and celebrate. What does the one year mark mean medically? The first year anniversary or birthday after a bone marrow transplant is celebrated as it "officially" marks a successful transplant, meaning that my body has learned to accept it's donor's cells and can now properly produce blood on it's own. The anniversary is also considered the patient's second 'first birthday', since they received new blood, new DNA and new life from their donor. Although we were having a little glitch in the system with tough news at the beginning of the week and too much uncertainty, even though I had good intentions for a very long time I was not able to pull it together and plan a 1 year celebration for Daniel. But my great and super supportive friend Ronit was hearing none of it and insisted we needed to acknowledge this triumphant milestone. No matter what, we were still at a year. With good fortune the upper school was going to be together for an assembly that day so everyone would be together. Ronit was collecting donuts for every kid in the school and I was getting a huge bouquet of balloons. a couple dozen GB packers colors and some Happy First Birthday ones thrown in for good measure. By the end of the morning I had called in a few other girlfriends that have been super supportive all year who could be there to share the joy and I am only sorry we couldn't have made it bigger for everyone that has been there for us. As the assembly came to a close the CEO of the school and friend called Daniel up and he saw Rob and I and my girlfriends come in with the balloons to acknowledge his fight and his strength. I stood in front of the school proudly and wanted to thank them all for their support. I was so overwhelmed I was told I missed the emotion of some of Daniel's favorite teachers and principle. It did not go unnoticed in my heart when I was told. Unfortunately, when I stood up with my arm around him to show my pride, he wrapped his arm around me, leaned on me and looked down (he is a half a foot taller than me) and whispered "I am so happy you did this, but you need to get me the hell out of here I am going to fall over I feel so sick. What the??? I looked at him and he looked beyond terrible. I can't believe he hadn't called me earlier to come home, but that would have totally ruined our surprise. I got so scared I didn't hear another word from the Head of the school but knew it must have been wonderful. We took some quick pictures and got him out of there within 2 minutes. He had caught a cold and it was hitting him hard. His first cold. You remember how you felt when your baby got their first cold? Well, here we go. Come on new immune system, show us what you got. It was going to happen sooner or later and docotrs are confident he has everything he needs to fight it. Let's just see. He got home and was asleep in his shoes and coat on top of his covers for several hours. I sat and worried and took his temperature every hour. Shit , I thought. Now if he got a fever I couldn't draw blood to take it to the lab. Well, we really are on our own. Hydrate, hydrate, hydrate and my angel Amy friend Amy rushed by some chicken soup because I was out and I wasn't leaving him alone. At this point we are working our way through the weekend and the cold seems to be subsiding. Thank goodness for that. I think I have a bit of the cold now but I will deal with it. We are hoping to get healthy and strong for our upcoming trip to Israel. Lots to look forward to. Lots to be grateful for.
After a crazy long week of ups and downs of the cancer rollercoaster we ended with Daniel having midweek surgery to remove his double lumen broviac was uneventful and actually quite humorous as Daniel awoke with quite colorful vernacular. He even shocked hi recovery nurse who I forewarned thatt Daniel awakens talking like a drunken truck driver. He is nasty and funny at the same time with a potty mouth like you wouldn’t believe. Daniel always has been used to waking up in an isolation room . because of his neutropenia or his risk of exposure to germs but no more. He is good to go in the general recovery which unfortunately for him meant crying little ones right next to him upon waking up… or should I say unfortunately for them. Yep he woke up enough to hear them and his mouth opened up and those nurses couldn’t move the little ones way fast enough. See I am used to it from the many times I have heard it. I have been tempted time and time again to videotape him and post it on line with all those funny people who just got their wisdom teeth out, but nope, it would never pass sensors. I was amused but the nurse was more shocked. I am just grateful it only happens when he is under the influence. Daniel only had one request for the doctors. He wanted to see the catheter once it was removed. Typically this is a no-no because all things that once were attached or had been inserted or growing are considered biohazard, but they did allow us to see it after waking up. I really thought this was so funny because I remember trying to explain the central line with ‘chester’ the training dummy and he flipped out not wanting any part of it. The first week with the line was miserable but he came so far over the past 18 months. He ultimately took full responsibility in the past months for all dressing changes because he particularly didn’t like the way I did them and with only a few (several ) reminders everyday from me he would do his own daily flushes. That line save him from many needle sticks and trips to the hospital for blood draws because I just learned to do them and could conveniently do them before school and just take blood to the hospital without him. So needless to say when the day came to get this out of him he was so excited he couldn’t imagine waiting another day to get it removed. After a few days of recovery today Daniel got into the shower with no tedious preparation of taping up and protecting his port from getting wet or dirty. This is such an small thing to you or I but to Daniel this was enourmous. Truly one of life’s little pleasures that most of us would take for granted. Unfortunatly, we will see how much he may miss this easy access when Monday he needs to have blood drawn like the rest of us. Guaranteed he remembers how much he once hated needles but my guess is he will quickly toughen up to realize the alternative and how much worse he has been through. Just when we thought we were heading to a year end of celebration and completion this week after we had an exciting couple weeks of football, radio, and NFL interviews. We welcomed back Dr. Craddock our primary care Doctor who was out on paternity leave and couldn’t be happier to see him to get a good report wrap up from him. He has always been so great explaining everything so thoroughly and compassionately. We went in for a very last CMVIG infusion before getting out the central line this week. Unbeknownst to us Daniel’s CMV level went back up so even though he has the t-cells to fight the virus on his own presumably we thought we would take advantage of giving him ine more boost JUST IN CASE. It couldn’t hurt in the teams opinion and we were fine with it. What I wasn’t in any way shape or form prepared for was what came next. First of all the clinic was over crowded so instead of being in a regular infusion room we had to wait a bit longer and they put us in the teen center which is a lovely room with sofas and chairs and a tv and video games and it is very comfortable and with no big glass windows to the outside halls which was probably a good thing for today in hindsight. Keep in mind Rob is not with us because this was just supposed to be a regular infusion appointment like we have EVERY MONDAY. Daniel was waiting to get started and I ran down to get some lunch because I was starving and hadn’t eaten yet all day. When I came up with my lunch Doc Craddock was waiting to talk to Daniel ( they are on a fantasy football team together and there is usually a lot of trash talking going on), I saw the look in his face and he asked me to sit down. He started right off by telling me that we needed to get Rob on the phone he has news that has taken even him and the team by surprise and he is very sad to have to tell me that they have gotten some very concerning test results back. Even though the preliminary results from his bone marrow results showed no leukemia there is something else that is very concerning. The floor dropped out from under me and I lost my breathe completely. I chose not to call Rob because I needed to understand what was going on first and know how to explain it to him. I will try my best to condense and explain what we learned over the next two days because as Dr. Craddock did his job and gave us the information immediately and as he got it in real time, what he did was give it to us in pieces and give us worst case scenario and all paths just in case. The problem with this is that he gave us the initial problem on Monday early afternoon and until we had confirmation through tests from another lab in another state somewhere ( I think Washington) we had no idea what was going to happen. Needless to say even though these results were rushed, the time between Monday afternoon and this morning transported me to the very long months of terrifying uncertainty of last year. I have to thank G-d that the end results turned out in our favor and although we have re-entered the realm of more uncertainty we are not as bad as it could have been. So here is briefly what we learned. Daniel continues to be an enigma, just like his case has always been. At Day 100 post- transplant Daniel’s bone marrow biopsy showed that he had accepted the bone marrow transplant and that he was 100% donor cells and 0% Daniel cells (technically 95% donor cells is acceptable to the doctors) this is the definition of a successful graft. If it was not this equation then it would look as though the graft did not take. This was the natural mile marker so to speak to check the graft. One year is the next to check. When they checked on Monday and we just got results the doctors were shocked to find that Daniel’s marrow revealed that he was 90% donor and 10% Daniel. This is concerning because this could mean that Daniel’s graft is failing and that if Daniel’s cells are taking back over and if they are malignant or cancerous is he heading for a relapse. The difference between Day 100 and now and 0% and 10% is concerning. Now we needed to wait to see if that 10% had Leukemia in them at a molecular level and then if he showed the unusual genetic translocation like he used to have when he presented his leukemia in the first place. This is what we needed to wait for. This is the important information that would determine our path forward. At this point Dr. Craddock has explained that he needs to contact our donor and mobilize him for a possible procedure called a DLI (Donor Lymphocyte Infusion) or a last resort of a second transplant. At this point I am sick to my stomach and and needed a break to go throw up. My lunch is uneaten and will be as I am on the verge of passing out. I am thinking about how I was trying to plan a one year celebration surprise party and what about Israel and how the fuck am I going to explain this to Rob. Is he still going to get his Central line out on Wednesday. I KNOW that is what he is thinking. That is all he wants is that thing out of his chest after 18 months and know I am thinking we are starting all over again. Daniel chimes in with amazing on point questions as I sit there speechless. Dr. Craddock explains it again and again and keeps saying he is just explaining everything just in case. Our regular nurse had come in at some point and has chimed in to snap me out of my catatonic phase. She starts debunking all of Dr. Craddocks theories and telling me not to get ahead of myself and we need to wait until we have more information from the specialized test tomorrow. They are rushing them as fast as they can and until we have those numbers we can’t decide anything. We get Rob on the speaker phone and Dr. Craddock explains it all to him. I have now heard it at least 6 or 7 times but am not registering that we are possibly back to square one. I keep saying look at him. He is the picture of health. I don’t understand. Doctor Craddock, finally says, “let’s wait until we know more tomorrow. I was very shocked to see these results and I am so sorry to have to tell you this.”
I would like to say fast forward to today’s results but it was anything but fast forward. We chose to not say anything to anyone because it was not worth anyone else suffering undue stress when there was nothing we could all do but wait. We went through the motions of the night and I cried in the shower for a very long time. I prepared my speeches how I would tell everyone the news. G-d is good. Results came fairly early this morning (which I am also thankful for) and they were as good as we could expect. The 10% of cells that are Daniel’s truly are cancer free and are not showing evidence of his genetic mutation at all. Thank G-d, Thank G-d, Thank G-d. pfu pfu pfu. Now the quandary comes about what we do about why his cells have come back. And will they continue to do so or stay the same. If they do stay the same that will be fine possibly. Dr. Craddock says if he is losing his graft it is unusual that it would be so late in the game. It would have been by Day 100 we would have seen this happen. This is very unusual (which is not unusual for Daniel). This is why the Dr. will consult with other specialist nationwide about a plan forward, but as it stands instead of what we though of not needing a bone marrow biopsy more than once a year to check him he will need to have one now every month to check that this 10% is not changing at all. Dr. Craddock says some Doctors say recipients can live with a mix of donor and recipient cell in a far closer balance but he is not comfortable with that considering how aggressive Daniel’s cancer was and how difficult it was to get rid of. There was so much more and so much more we don’t need to address and we can just breathe a sigh of relief for the fact that tomorrow we get to go ahead with plans as usual and chalk this up to an enormous scare. I will look at it as a way that we will get to keep a closer eye on Daniel for the next little while as we will be checking, checking, checking him frequently and thouroghly instead of waiting until next year. I guess I will consider that a silver lining. It is REALLY faint and deeply hidden but I will take it I guess. Tonight I will sleep knowing we are moving forward tomorrow with surgery and then WE WILL celebrate our one year birthday on Thursday. You know lately we have had so many more good days than tough days, but I have to say that yesterday has to be pretty high up there on the top 10 list, and we all know how Daniel loves a good top 10 list. After the previous ESPN articles that came out about Daniel and his sideline opportunity somehow an amazing man got news of Daniel and contacted us saying he was inspired and intrigued by Daniel’s story, well, who wouldn’t be right? Can you believe, this guy was from NFL Network and wanted to do a story about Daniel and the studio and his D[P]R show and the hospital. Well I was not going to hesitate returning this email. He said he would be in town this week and would like to move on it. He had his two guys that would be in town doing a sports segment with the Broncos and it would be a good if we had time. We set up a time for a phone call and Daniel took the first call. The connection was instant. Age and distance didn’t separate these two, they were instantly connected by commonality of Jewish day school, Jewish mothers that wouldn’t let them play football and more. Too funny. I let them chat and left my part to logistics. I kept to the details and was excited that we would be getting to meet the Sklar Brothers that have done about a thousand things on tv and internet and are hysterical comedians. They do a ton now with sports and would be here in Denver this weekend at Comedy Works and would like to come interview Daniel. Fast forward a few days and now with Daniel’s great test results behind us I picked him up early from school and off we went for a day of fun at the hospital focused on highlighting Daniel (no infusions, no tests, no doctor checks today). Wait I have to back up a second, these past couple days have been crazy, but a joy because along with Chris and Cody in the Studio I have been working with the media people at the hospital trying to get people together for the perfect picture of Daniel and let me tell you, there is not a shortage of people willing to help out. Narrowing it down has been the tough part. We didn’t want to waste NFL network’s time and we also wanted to do our best to represent the hospital and Daniel the best way possible. Daniel has made a huge impression on many people over his stay at the hospital so finding the right people was key. We often joke that he is famous at the hospital but not just because he is a common face, but because he is such a success story.
Okay, It was almost game time, or should I say show time, and it was such a special treat because aside from most days that Daniel and I go it alone, today Rob joined us. It was different to have Rob there because even though today really was unusual and special, Daniel handles all of this stuff like a pro, but it really was exciting and Rob got to be with us for a very exciting day. So we picked Daniel up. He got changed into his CHCO/Broncos rep gear and we headed to the hospital. We were early and the NFL team was a little late. Be flexible I said to myself, a thing I have totally transformed about myself. Then they texted me and asked us to meet them across the street for a bite to eat. Honestly, I have to say the second we met them it was like sitting down with old high school friends. These were guys that were my age, with more in common in background and upbringing than I could imagine. (I speak just for myself). We chit chatted but they didn’t want to know too much of Daniel’s story, because “as professionals, they knew they wanted the actual interview to be fresh. Well, most of that went out the window fairly quickly, because it is pretty hard to keep a bunch of Jews quiet while talking over lunch. Anyway after a quick bite we went over to the hospital and they saw Children’s Hospital Colorado and The Seacrest Studio for the first time. They were so impressed and I could not help but feel a sense of pride in my heart. I don’t know why, it is not like I own the place although I probably could in what we have paid in medical bills at this point, but in my heart I feel an ownership of sorts for this place, like it is such a part of me now. Within moments of Randy and Jason Sklar (did I mention they were identical twins) sitting down at the microphone in the studio, they remarked how they were amazed at how beautiful and technologically advanced the studio was and then BOOM! the show is about to start because we are so behind schedule and with no prep or fore warning Daniel informs them they will be guests on HIS show and how it will go. Daniel runs the show with ease. He makes these comedians laugh and he is fluent in his knowledge of the topic of football with these experts. He impresses with his ease in front of the camera but I can tell that as the show and the afternoon goes on and the interviews with Chris and Cody and Dr. Craddock (Daniel’s primary doctor who came off of vacation to participate for Daniel) continue, it is not Daniel’s talent that impresses them all, but his strength and character that touches them more. The connection I think he has made more with these people is not only now professional, as an up and coming kid in their profession (as Daniel may think) but these are “my contemporaries” they are parents of children and I can see it in their faces, I can see it in their eyes, I saw it at the restaurant 3 minutes after meeting Daniel, he is a kid that has overcome. He has overcome so much and done it so well. He I impressive. He is impressive for so much more than what he is showing on the outside and he doesn’t even know it. The afternoon became pretty rushed because things take longer for tv than radio as they explained. But it sure was all fun to watch and Daniel was loving it all and at ease through it all too. Dr. Craddock spent longer than he probably should have explaining a little of Daniel’s case to Randy and Jason and hopefully didn’t freak them out too, too much. I listened in and although I had heard it all what seems like a thousand times now, I realized it is still frickin’ scary. Especially to these two guys that have young and healthy kids. I bet it knocked them for a loop in the middle of what was meant to be a fun day and if they are reading this at some point I apologize for that. The afternoon wrapped up with an interview with me which I hated, BUT, I didn’t cry and I kept it together. Maybe it had something to do with the fact that I was being questioned by cute Jewish identical twin famous boys, that made me less nervous, or more nervous, I don’t know, but I got through it. In the end they were all extremely positive about how it all went and encouraging that Daniel should pursue his career in the field because he has promise. They encouraged him to follow up with them and come out maybe in the summer for an internship at NFL Network which you know he will be all over. At the end of the afternoon we took the Sklar Brothers back downtown and I think Rob enjoyed giving them a little tour and history of Denver since he knows so much. They liked hearing about the history and family traditions and things. It was great for Daniel to have some one on one, or should I say one on two time with them. I know this is a memory he will hold forever. He can say he hung out with the Sklar brothers in the back of his mom’s car. They were also very gracious and invited Rob and I to their stand up show as special guests at night which was wonderful as a nice night out for the two of us something we don’t do often. Laugher is good and with those two it was abundant. They were hysterical. It was so wonderful to know how encouraging they were towards Daniel and how impressed they were with him. It was also so nice to hear how appreciative Daniel was of the opportunity we were given. We look forward to seeing the finished piece maybe next week. Of course I will pass on whatever I have as soon as I see anything. In the meantime I suggest you check out anything from the Sklar Brothers on NFL Now or maybe Trendzone to brighten your day. He said He Said is my particular favorite. Thank you David Nickoll, Randy Sklar and Jason Sklar your three are mencshs. After multiple days of angst and uncertainty my mind had started to play tricks on me. I was at the point where I was coming up with reasons the nurses, the clinic, the doctors were not returning my calls or were not telling me the results of Daniel’s Monday Bone Marrow biopsy. Why weren’t they in by now. Had they been withholding the information because it was bad. Are they waiting until we are there for our next appointment? Are they letting us enjoy our one year celebration next week and then they will drop the bomb shell? Are they going to let us go to Israel and then tell us? They told us they should have the preliminary results within 24 hours 48 at the latest. But now it is much longer than that and my parents and my sister have called or texted for news what feels like 3 million times. It has only made me more anxious. I am trying to function like a normal person yet I see the past 18 months like déjà vu all over again, again and again and again. I am trying my hardest to not lose my mind, or go to the hospital and pull a Shirley McLaine. I am trying really hard to stay busy and distract myself. And then 70 hours and 35 minutes later the answer finally came. There is no evidence of Leukemia cells in Daniel’s bone marrow. This is just his preliminary test. We still need to wait for his Phish test and his chromosome testing but this is great news. The tears come. The tears of joy, the tears of relief, the tears of exhaustion. From the past three days, from the past year. We have so much to celebrate and so much to be thankful for. This is one year down and four more to go now. Doctors say we need to be clear for 5 years before we are forever safe and clear to not worry. I don’t know if I will ever be THERE, but I sure would like this part of it off my list. One year down.
Our beloved P.T. Kristin (remember Kristin) popped her head in while Daniel was in his bone marrow biopsy to say she love the second article on ESPN about Daniel on the field. WHAT???? Geez, I may just may get fired from my manager's position.
http://espn.go.com/blog/denver-broncos/post/_/id/15947/15-year-old-cancer-survivor-gets-dream-come-true-as-sideline-reporter-for-broncos-packers Today started very early at 6 am when I had to wake Daniel up to eat. Due to scheduling that was done months ago and probably not in the most ideal way Daniel would have to be NPO which meant he could not eat anything 8 hours before his bone marrow aspirate this afternoon. Not only is it really difficult for Daniel (or most teenage boys) to go without food all day but Daniel had all morning Neuro -Psych testing this morning in which it is highly recommended that he have a substantial meal before such a intillectually demanding test. Hmmm, kind of a flawed day as far as the scheduling lottery but again this was the way it played out months ago. So I woke him up to eat at 6 in the morning and he was not very happy with me. He threw down some "mancakes" which are these protien pancakes I found for him that he likes and are pure protien ( hey good name) and then went back to bed for an hour. He woke up and we were off for a full day of testing. First on the agenda PFTs. THis is Pulmary Function testing in which he goes in the box. He has to blow in the contraption that measures his lung capacity. I can't even count how many times he has done this test. I don't know how he feels about this test. He has don't this one more than normal amounts because of the CMV pnemonia and they have checked and rechecked more times than I would like to remember to know that it is gone for good. Remember all of this testing is happening to get baseline measures again because he is just about at his one year check. THen he had 3 hours of neuro-psych testing. While he was in with one doctor I was with another answering the same questions I did a year ago then filling out booklets of questions and form after form on his progress and current status. It took me just about the same amount of time to fill my papers out, except I got to go down to the coffee shop and get something to eat. I knew he was starving at this point. By 12 he came out of this appointment and we went directly to Endocrinology which was a new office. Wow. Never been to this one. We met a new doctor and REALLY liked her. had a great check up but found out that as expected that while Daniel's body was working hard to survive the year of cancer and transplant it was not working on growing bone. He did grow in stature and through puberty phases which is great but he did not grow bone density and has Osteopenea. This is something that he can improve Thank goodness and we will have to work on. He has some new goals now and we rushed down for an added exray to see his growth plates to see if there is any hope for a few more inches. I know Daniel is really waiting to hear the results of this test. He is hoping hard for this one to come back positive. Hey Daniel have you seen your parents- I think you are doing just fine, don't be so greedy. we said a very quick hello at the studio and were sad that he coulldn't do a show today. There was so much to talk about too because of alll the great football events of the weekend but we were now running so late for our afternoon appointments starting at 1pm. Up to the 7th floor and the big FINAL Bone Marrow Aspirate. Daniel had to go stop and show some photos to a few of his favorite fans in the clinic and of course there was Bob and that was it. It was all over. There goes any productive medical talk. All prep got done for the next hour somehow as the two boys gabbered on about football this and football that and before you know it Daniel was sedated an hour later and having his procedure and I don't know how it happened. Bob has been a lifesaver for almost 18 months and not a day goes by that I am not thankful for him. I know he knows this. And thank goodness he was there because he helps me to breathe when I realized that I was then there standing alone during the biopsy and he assured me I was doing fine when I asked him if I would be able to breath or sleep until the results came back and he told me that I was just like every other parent with the exact same thought that the results were not going to be okay. And I was waiting for the other shoe to drop. He said I was either doing fine or hiding it better than most. Thank you Bob for making me feel better than I really do because in the 10 minutes that the biopsy takes It seems like forever and in the 24 hours it takes until the preliminary results come back and I don't breath I will try my best to remember your kind words. WhIle Daniel woke up I thought about how this will be his last biopsy (hopefully) for a year and that G-d willing this will all be a thing of the past soon. The doctor came in with some lab results and his numbers were better thn they have ever been which gave me more confidence than before that maybe , just maybe his bone marrow will be perfect tomorrow and the real results will be perfect too. Believe Believe Believe. He started to wake up and he was not a happy camper. He was never this sore from an aspirate before but he woke up very alert. We did however have to sty for the remainder of another hour and a half for his last and final CMVIG or Cytogam Monday infusions. If his labs continue to show negative for CMV he will not need to have these infusions any more. Woohoo. THe bummer is that next week he will be getting his central line (port) out which means poor Daniel will need to be getting his blood drawn like anyone else (every other week or so) to check his blood. If he were to need an infusion or any kind of treatment it would need to be by IV. Now people do it this way all the time and it is a trade off I know he would rather deal with for getting the line out of his chest, so I am sure you will hear no complaining from him. He was finally awake to take something for the pain and have a little something to eat by 4:50 P.M. phew Long Day INDEED.
Daniel's choice for celebration dinner straight to Elways for his favorite soup. Somehow he seemed to sneak in shrimp cocktail, salad crab legs and smores. How do you describe how it feels to see your child’s dream realized. I can’t say we got all the way there, but today and tonight but to see him in his element and meeting and greeting who he wants to be his peers and learning so much and having all his future plans fall into place. So many people have asked time and time again, has Daniel always wanted to do this? Yes, he has always wanted to be a sports analyst and involved in football, but now the opportunity has presented itself faster and more fortuitous than ever expected and no one can deny he deserves it. But talk about making the most of it. I can’t tell you how proud it makes me that Daniel is not only enjoying the opportunities he is being given he is making the most of them. He is learning so much and taking more and more from each experience. For example with each professional he meets, in each area of expertise, he takes it all in and learns something new. He is refining what he wants to become and learning more and more about what he will need to do to get there. I marvel at his wisdom and focus. Whose child is this? He impresses me so much and I was just teary the entire day as I watched him work. I walked him into Sports Authority Field making sure he knew where he had to go and meeting up with his contact person who would take him around all day and give him this (hopefully not once in a lifetime) experience. Once they connected I left them to do their thing. I knew it was time to let him be on his own and give him some space. I know he didn’t want mom and dad holding him back so we left and decided to just check in later. Well little did I know by the time we got back he was going to be front and center live on-air at the bar in the front of the stadium with probably a couple hundred people watching. Wholly geez, he didn’t even flinch, I couldn’t believe how comfortable he looked up there in between Andy Lindahl, seasoned sports analyst and broadcaster and Jeb Putzier, former Denver Bronco. He didn’t say much but he was involved for the whole show and learned an important facet of the job. As we joined the watching the show we met another broadcaster and Bronco that introduced themselves to us and said they had met Daniel and this extremely large man shook my hand and said how inspiring my son was and that he met Daniel and that Daniel gave him his business card and that he would really, really like to be on Daniel’s radio show. To hear that my son was inspiring is an amazing thing. We watched him finish up this show then be whisked away to his next appearance. Andy had a pretty tight schedule and we commoners were not included. Rob and I skulked off to our regular seats while Daniel went into the bowels of the stadium and learned what broadcasters do. Daniel later reported many highlights of his afternoon like the hub of the technical room and much, much more . Actually one of the highlights was a hot media girl calling him handsome but he would probably be really mad if I divulged that part. He told us how he stood beside Bob Costas and peaked in and saw Chris Colllingsworth and someone else I can’t remember. Remember to Daniel this is the pinnacle of his sports world. This is what he would be in our living room watching on Sunday and now he is in the middle of it. Can you imagine. All the while he is mentally taking notes and learning snippets along the way. I can’t believe all the details he told me. He spoke to Brian Griesse who he spent some time visiting with very early in his hospital stay last summer. Brian was very generous with his time and Daniel has contacted him a few times since then. When they met again today Brian remembered him. Again, tears welled in my eyes knowing how far he has come. Andy spent the whole afternoon introducing him to many, many people. Some of the people were those that got him started in the business and Andy is paying it forward. I think he is serious when he says that he sees Daniel coming for his job. Interestingly enough, Daniel told me tonight that he thinks he needs to learn more about reporting on just sports so that he knows more than just that. Well that is the person that I would like to have met and given a big hug to today. And this was all before game time. Once game time started Daniel was on the sidelines for the entire time. I know there was a game going on but I don’t think Rob and I watched any of it. We were so excited for him to be so close to his favorite team. So many people were texting us asking who Daniel was cheering for. Daniel was all work and representing the hospital while on the field but once up in the stands he would change into his GB Packers gear and be a total CheeseHead and believe me, this fan can hold his own in an opposing crowd. But watching him on that field I had so many feelings. I worried he was going to be sore and tired from the physical demand of all the standing and walking. He was back and forth and back and forth 100 yards, 100 yard but you know what? He was in his glory and there was no way he was ever going to complain. I sent him with Tylenol and there was not a chance he was going to sit down or call it a day. I already knew that. But as I was watching him with the radio head gear and not knowing what was really, technically going on I was worried he wasn’t having a good time. What was he really experiencing. It was supposed to be the game of the year. His favorite team and he wasn’t cheering, he wasn’t even smiling. I know this because I was watching him through binoculars the entire time. The whole time I couldn’t wait to hear what he was thinking. I knew he wasn’t going to be enjoying the game as if he was watching it at home or even from the stands but I couldn’t wait to hear what he thought about seeing Aaron Rodgers 10 feet in front of him. Andy said he had one job, to watch out for himself and not get hit by a player or ball. My thought was more like just don’t go rouge and group Julius Peppers or Clay Matthews. He succeed and behaved and I think made the most of his day. He met so many new people and learned so many new facets of his future business. I couldn’t be happier for him. I can’t speak for him but I don’t think he was okay that his Packers didn’t win. I know someone had to win and someone had to loose and just because he had a good experience still doesn’t make it okay that they lost. I know he was very conflicted and I was for him but all and all I thing the day ended in a win for Daniel. Daniel promised to send me pictures from his perspective tomorrow so I will post those then. We have a huge day of tests at the hospital. |
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July 2016
CategoriesAuthorNadine |