So much has happened, so little has happened. My frustration grows and grows as does my pride for Daniel. Friday Daniel had an updated MRI and so far the Radiologist says he sees no difference between the last one he had 3 months ago (approx.) and this one. This is a great thing. This means that since he has gone off of antibiotics the area of infection has not returned or grown. It has not lessened or shrunk either but this is likely just areas now of bone and tissue remodeling. While this is a positive note once again we have continuous weeks in QNQ range of CMV counts. Yes this is still the lingering virus, but today during our regular weekly CMVIG (immunoglobulin infusion) Daniel made a bold decision, left up to him when fully explained, to take the next step and change his treatment to move his antiviral treatment to the next level to move forward. Unfortunately this means remittance into the hospital. Yep just when the doctors finally gave us permission to actually go away for the weekend (as far as the mountains) we are moving back into the hospital. Likely on Thursday for highly monitored treatment but this time it is to knock out the virus once and for all and to move on with our lives. It is a bold and proactive choice that does not come without risk but I have faith that it will be closely monitord every step of the way to prevent worser and unmanageable consequences from occurring. We can ALWYS stop treatment and reevaluate and like the Doctor told us today, Daniel is in such a different stat of health than he was 6 months ago. He is so much healthier than he was then and he is very strong and his kidneys are functioning great so we are all going to be positive and go into this with a positive outlook of moving him onto the next phase of finishing this crap and moving on with living. The Doctors know I have the goal of getting him back to school in the fall , on time if at all possible and if not to Israel in the Winter with his class. I know my goals are lofty for him but I also know what he is capable of. I know what he can do and I see no need to wait on this any longer but it had to be Daniel’s time to want to start this. I am glad he is ready now. The only thing making him wait until Thursday is his big DEBUTE on Wednesday. Again with the social agenda. Dr. Craddock said why not today or tomorrow to get started and Daniel said he has an important commitment. Well yes he does. I mentioned this earlier but not in detail. Now I can but will save the fun stuff for Wednesday. Daniel was asked for specifically by the Broncos Headquarters and then CEOs of The Children’s Hospital to be the Ambassador between the two for their new partnership. The said it was a no brainer when their merger talks began. Can you imagine Daniel’s excitement. The kid is on his way through headquarters to the Commissioner’s office for sure. We have recently met to hash out details of his duties but so much is still to ensue. Kickoff starts this Wednesday though with a Pep Rally and Q&A of Broncos players Cheerleaders, Miles the Mascot (I will be staying away) and led by none other than Daniel Hailpern of Daniel’s [Preview] Review Show. He was asked to rerecord his Broncos Go song with an update and I can’t wait to hear it at the rally. I will of course be beaming and update with photos and a lot of bragging. Could this kid make his lemonade ANY sweeter?
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What can I say for an update. Today we completed our first 6 treatments for eyes. I said we, like I am getting them. I just carry the bag of stuff and do the driving. Daniel completed the first six treatments of twice treatments like a boss. He did great today and although needed a bit more sleepy stuff to keep him sedated because he is getting a bit more tolerant to the juice he had an easy treatment and it just took him longer to wake up. Could have also been due to the fact that he had to get up at 6:15 to be at the hospital so early. This is way off his regular sleeping in schedule. He then mozied on over to the 7th floor clinic, our home away from home, for a 3 hour infusion session and had a bit more of a nap and was refreshed and ready for a fabulous radio broadcast at 2 pm. What a champ. They did football trivia for the off season and turned it into a full on competitive sport. Surprise surprise! Daniel won against sports anchor for channel 4 CBS News, but who is counting points…apparently both of these two. Geez. Can you say competitive? Good news on the medical front we are now slowed to once a week injection treatments and can have an entire week to rest until next treatment next Monday. And then the following treatments will be only once a week for the next nine more weeks. Daniel shrugs it off as not being that bad (as long as he doesn’t have to wake up this early). This week we are busy with a business meeting for Daniel regarding some Bronco business coming up and a big MRI coming up on Friday to follow up on the “saga of the infection” I am so curious to know how he has done without antibiotics all this time. Has the areas of infection stayed dormant or grown? Has his bone and tissue begun to remodel? So many unknowns to look forward to finding out.
I have not written a blog in several days because I have had some down time. I had to have some surgery on Friday to revise my previous mastectomy reconstruction and although everything went fine I have treated myself to some relaxation and recovery time. I can’t say I have been pampered but I have had a few nice visits from friends and lots of sleep and some nice quiet time. What I did have though was some loving care and company from Daniel. He spent the whole first night and next day of recovery right by my side. He cuddled up and helped me with whatever I wanted and I was obvious that it was with 100% honest love that he was returning the past year of care and attention. The added bonus is that Daniel having his permit can now do the driving to his appointments and mine too.
An update about his eye treatments is that they are going well. On Monday, after 5 treatments he had an assessment that showed the treatments he is getting ae shrinking the presence of infection in his eyes. Although the dilating he needed to have for this assessment effected his sensitivity to light terribly all day, overall he is doing great with treatments and has very little downtime after each one now. He will soon shift to a once a week schedule instead of twice a week but is still sedated for these so it is still pretty significant. We seem to have the perfect cocktail or have found the sweet spot so to speak of getting him to sleep and awake again quickly and easily with little issue. As far as the CMV in his blood he is unfortunately back up and out of the negative range and in the QNQ range but we know that it is very low (QNQ is anywhere between 0 and 999 and generally undetectable). Because he has slipped back up they are looking more closely and can tell it is very, very low. This is not great but reassuring that it is so low. Treatment continues to stay the same. If we don’t have enough going on these days, Matthew did something and sprained his wrist. Why not right? AAAARRRGGHHH. Slip in another appointment with an orthopedic specialist and he is two weeks in a splint. Under other circumstances I may have brushed it off but if there is one thing I have learned this last year is listen to your kids and pursue their concerns. Never disregard a medical concern and listen to details carefully. So splint for a couple weeks and follow up and although he can’t lift anything heavy for that time Rob has assured him there is plenty of NOT HEAVY paper work he can help catch up on at work. Sorry, no time off for Matthew. So busy, busy but same same. I have to say that tonight I was shocked beyond belief at the outpouring of support by total strangers.
We were the first customers on their doorsteps about two years back and I have always felt a special place in my heart for owner Pariza. She has always been so sweet and caring and attentive. We have always loved a night out at our neighborhood restaurant and she has always been so great with the boys. We even joke that she is their girlfriend. Fast forward to last summer and being in the hospital several weeks and not eating for so long AMBLI was the first place I went before going home to take a shower. I went in the door and told Pariza about Daniel’s diagnosis and we both cried. She told that exact story tonight when she introduced us at a fashion show she and co-owner Kelli hosted at their restaurant. This was their first annual fashion show in conjunction with awesome store Pink! and Blondie’s hair salon and it was done in an effort to bring the community together to support one of it’s own. Now to me I understand this to mean someone not only in your community or neighborhood but probably someone you know. Like when our friends and family put together a bone marrow drive for Daniel. It had a great turnout (in the several hundreds) and within one maybe two degrees of separation we were either related to (thanks to Rob’s side of the family) or knew every person who showed up. But not tonight. It was a small affair of maybe 50 or 60 people that bought tickets through the restaurant to show support for Daniel and my family as people in their community. Earlier in the afternoon Pariza asked me to come early and have a speech ready to tell Daniel’s story. I am terrible at public speaking and was already nervous. I tried to prepare something and although I could talk forever about Daniel how would I summarize it for perfect strangers who were coming specifically to hear about him. Well I guess this is what I have been doing in this blog for the past year so I quickly wrote down a few notes and got ready to go. When I arrived I was a bit early but was greeted by Kelli and Pariza, always warm and welcoming. I saw two people I knew (but not well) parents of a good friend who were there to support Daniel, but no one else. Instantly uncomfortable and now consumed with thinking of speaking I am starting to panic and Rob is still an hour from being here for my support. Daniel didn’t come because there were going to be to many people we wouldn’t know ( and that was certainly true, not a one) and also because he had another eye procedure this morning and his eyes were still sore. Lucky bastard, saved from social awkwardness. I go back to nursing my half a glass of sparkling wine, trying not to get drunk off of it before I have to speak. (honestly, half a glass is enough to make me tipsy). Pariza introduces a few people to me as they mosey in but so far it is a luke warm atmosphere. Then it starts getting crowded and not a single familiar face, until finally Rob shows up. Thank goodness. He sits down at the head of the runway where we have been given the seat of honor just in time for the show to start. I am now glad I wore a sleeveless jumpsuit because I am nervous as all get out to speak. Pariza starts with the story of our first meeting and then of me sharing my news of Daniel…ugh. She took the beginning of my speech. Crap, think, think, think. Punt. Well we have been doing that all year right s here we go. I am now already tearing up from our introduction so who the hell cares now. And then the room disappears and even though I read my speech that I wrote roughly an hour before I find it so simple to talk about Daniel and all he has achieved this year. I don’t know how my speech was but I do know that everyone clapped when I said that this year Daniel beat cancer and this year he finished his freshman year of school with honors and I recall finishing it without crying. I am getting better and better at that. After my speech and a few others there was a fabulous fashion show with the most adorable, freshest amateur models you have ever seen. I am certain both Matthew and Daniel are sorry they missed that part. Not so much my speech, but certainly the girls. Immediately after the fashion show Rob and I were approached by several people. Everyone giving prayers and support and encouragement and pure love. Total and complete strangers that came specifically because they have heard our story. One lady came to tell me her brother was a donor and he met his young recipient and they have a great relationship and run a fundraiser together. Another woman just wanted to say she is thinking of us. Another is woman came to introduce herself from NY and tell us her story and say she understood because she was here with her daughter who is 19 and had been diagnosed at 4 years old had problems againat 6 and had a transplant and is a beautiful thriving college student now. Every time I looked at her during the night she smiled at me and I teared up. Her grandmother spoke to me soon after and spoke from the heart from the grandmother’s perspective and I lost it. I thnk Rob did as well. There are so many levels to this disease. Someone Rob used to bowl with came up to us much later in the night and told us he made a nice donation just knowing it was a kid in need having no idea it was Rob’s kid. The theme was the same the whole night through strangers wanting to help and feeling something for this special kid. In my speech I said what Daniel was hoping to designate his money towards. Seeing as though he is so determined and so focused seemed to make these strangers more familiar and more generous somehow. I do not know what they will give Daniel and I don’t think it really matters. It was not about the money. It was that complete and total strangers came together to give of their thoughts and their tears and their wishes for an unknown child that asked for nothing and certainly asked for none of what he got this past year. He will use his donations well and for something that he deserves and for something that will better him. It was intended for something purely fun for him this summer and I plan to not interfere with that one little bit. Today’s treatment was 1000 times better than the last one. Aside from the fact that Daniel came out of sleeping very combative and agitated (which they said was normal) everything else was much, much easier. We will make some more slight adjustments on Thursdays treatment and hopefully get it down pat for all the next treatments to come. Best of all, all he really needed was lots and lots of sterile drops afterwards and a simple Tylenol instead of all those heavy narcotics he had last week. Less was definitely more in this case. Always happy with the less drug option after what I know has gone through his body. Straight after his morning eye procedure we went over to The Children’s Hospital next door for his regular Monday infusion and were so pleasantly greeted with great news from our primary Doctor. He told us we finally caught a break and that we got some test results in from a few weeks go that pleased him very much. He explained that Daniel is producing Lymphocytes specific to fight CMV. To explain this in simple terms, our blood cells produce many different components and several different types of lymphocytes. Each type of lymphocyte is specifically matched to fight a different virus. This test specifically went looking for the lymphocyte that the body makes to fight only cytomegalovirus. Low and behold Daniel’s own immune system is producing this lymphocyte now on its own and even in good amounts despite getting an antiviral drop in high doses twice a day that is knocking it down. He is still producing enough on his own to call “an immune system”. The doctor was very pleased and me…Well. What can say? I have never loved lymphocytes so much. I am thrilled, excited and elated all at the same time. Again we are not out of the woods as Doc Craddock says but we are definitely headed in the right direction. This was enough to help ease the idea of the schedule we will have to ensue for these eye shots. Twice a week for three weeks and then once a week for 3 months. No kidding. This is not going to be fun, but damn, it better work, we now are leaning the other direction away from readmittance and full body systemic treatment that has a high chance of damaging his kidneys and this is great news. Even Daniel said that this isn’t the best or easiest thing in the whole process but like everything else, he will get through it. Again thank you all for your continued support and well wishes sent our way.
Speaking of wonderful well wishes our wonderful local restaurant AMBLI that has beautiful lovely owners Pariza and Kelli have always had a fondness for Daniel, well before his diagnosis. They are so thoughtful in thinking of Daniel and honoring him at an event they are having this week. Incidentally Kelli is coming up on the 25th anniversary of her bone marrow transplant so they are truly kindred spirits and understand what Daniel is going through in isolation like he is. They have decided to gift Daniel a portion of the proceeds from their fun fashion show they are hosting on Thursday so that Daniel can do something fun for himself this summer since he lost his summer last year. Regardless of if you can make it on Thursday, if you are in Denver I encourage you to go to AMBLI and enjoy everything about their little place. We love it and go whenever we get a chance to get out. Yesterday was a very emotional day for everyone but was spent in the best way possible for Daniel, with friends. I spent the whole day thinking of the day Daniel was diagnosed one year ago and everything that has happened ever since. Mostly of all the triumphs he has seen and what he has amazed us with accomplishing instead of all the pains and losses. Those have been too great to recount but the good truly does overshadow the bad. I try to not think of what the future holds and just that we have one to live. I know the basics and what will be but I would rather think of what we have and that is Daniel and everything he gives to us.
Today started like most others. A lazy teenager not wanting to get up but after poking and proding and finishing morning meds Daniel felt a lot better than he had after a really rough couple days of eye procedures. Finally the pain in his eyes was mostly gone and thank goodness most of the pain medicine and heavy drugs were out of his body. He did nothing yesterday but sleep and throw up after getting home. Like a bad hangover he slept it off the whole day and night and had reawakened much better. His eyes had not readjusted well to the light so we went and bought him some new very dark sunglasses to black out most light. He will be having these eye treatment twice a week for quite a while so he will need them constantly. After shopping the two of us went for a nice lunch and although it was not a celebration it was just an acknowledgement of his success. By this time I had been crying on and off for hours from all my nice messages and sentiments from friends and family near and far and realized by late afternoon that Daniel and I made a little toast at lunch but never really talked about why. We don’t need to. We have our own language and understanding between us now and although we do talk about everything, some things just really don’t need to be discussed. When we got home Daniel’s friends came over for a walk and I ran to the store. Again advised to not leave him alone watching him for any problems post surgery/procedure. At the store I called to check in and heard the boys having such a great time I suggested they stay for pizza and movies. Add one more best buddy and it became the best time Daniel has had in a very long time. One very large pizza, many many rootbeer floats. S’mores made (lord know how, there were fondue forks out of a box and the grid off the gas cook top- I am not asking questions), stupid movie watched and lots and lots of swearing and laughing had. Daniel politely asked me to lease go out to dinner and then when I called to check in asked if we would go to a movie. It worked out well for everyone. I know I write this blog and I update Facebook but when I put something on FB yesterday Daniel couldn’t believe the amount of likes I got so fast. I said it is because everyone loves him and supports us all and is happy he is doing so great. The ‘likes’ for me is the same as ‘likes’ for him and it made him feel pretty good. G-d forbid his mom has more friends than him right? That being said he doesn’t use FB as much as Instagram. Again he says Facebook is for old people- whatever? But Daniel put something on his Instagram that truly tore me apart that I wanted to pass on because although these blogs are soley from my perspective and you all get to know about Daniel’s year, you haven’t gotten to see what Daniel thinks of it from his perspective. This is what it has meant to him. I am so in love with him and immensely proud of him every day, but to see how he has handled his hand he has been dealt makes me marvel to unimaginable heights. I have been honored to get to have a front seat and watch him every moment. Ladies and gentleman please get out your tissues: No, this is not a picture from last nights lighting storms. It is Daniel's inside of his eyeball lit up with contrast. The blob on the side is a blood spot with white in the middle which is infection from the cmv virus. There is a positive, we got a second negative blood test back yesterday which is great but the cmv treatment was worse than horrific. we should have cut out th e middle man as expected and cut right to the chase and come right to surgery. Daniel new he wouldn't be able to handle the testing and treatment without sedation and he was right. Without going into detail, the University eye specialist may be eye experts but they are not kid experts. it did not go well. Fast forward to this morning (early early) and we are back up in the University Hospital but for full on sedation. After a lot of unorganized mishugas, we got the ball rolling and the procedure itself was quick. Daniel waking up, not so much but I hope all went well. Being sedated, he stayed still and they got it done. he will need to be sedated and treated twice a week many weeks until his immune system kicks in and can fight this cmv in its own. with our second negative in a row if he can keep that going maybe his system can meet up with the treatments without having to treat him systematically with more drugs. Fingers crossed this is coming together. This new hurdle is going to be a pain in the ass but one that is terrifying. Losing his eyesight scares me to death. I can't even think of this possibility as a side effect at this point in the process. We will deal with this pain of logistics. It will be a crappy first few weeks of summer again. This may out a significant dent in his video game playing, but all for good reason. Tomorrow we will acknowledge a year of triumphs. I hope he feels well enough to recognize his strengths. I know I will have a swarm of thoughts as I always do. Now just compacted with a few rungs on the ladder...as if we needed them.
This week has been one for the books. I honestly do not know what day it is right now. We have been at the hospital long days doing testing and quite frankly I am exhausted. I don’t really know if this is current testing for his current virus or if this is 6 month out testing from his actual transplant. Whatever it has been tiring for both me and Daniel. A lot of sitting in rooms waiting. Monday’s blood draw I did so that was quick. We did that at home so no waiting around for that. Delay on the midday CT Scan because of power outages at hospital and three trips back and forth to the hospital because of SOMEONE (who shall remain nameless) forgetting his computer at home. These are times I am grateful we are only 15 minutes from the hospital, but still three times in one day is a bit much. Afternoon radio show was a treat and comic relief at it’s best though. Daniel’s bestie teacher/friend Josh came to his show for the first time to see what it was all about and I think was very impressed. Daniel was excited all weekend before that Josh was coming and was so proud to share his hospital life with Josh, after all Daniel devotes so much time to his radio show in the Seacrest Studio. Long Day #1. Plus Matthew finished first day of finals and had two more to go. Tuesday was finals for Daniel in the morning and I had a meeting for my mother in law, rush rush rush. Thank Goodness she is doing so well. One less thing I am worrying so much about. Back home to get Daniel then to all day treatment and I know there was another test and I already can’t even remember what it is. OMG it was only yesterday. At least we found out that the CT scans looked improved and his lungs are showing less to no evidence of CMV. Unfortunately we found out there was a problem with the labs for his CMV blood work and they were unreadable. Seriously?!?!?! SO there goes our hope of a second negative read in a row. Well they drew blood again for a Thursday read so fingers crossed. Wednesday came after very little sleep. Last day of school for Matthew which is exciting for him (sort of-he will have 3 weeks of summer school) School all morning for Daniel and then rushed to hospital for another full day. This time we started with meeting one of the heads of the hospital for some excting news to come. That is all I can say about it for now. (Spoiler alert ‘Broncos Go’ ). Next up EKG and Ecocardiogram , no idea how that went yet. I assume fine, although after the next test I should stop assuming anything from now on. Down from 3rd floor Cardio to 1st floor outpatient for an eye exam. This is Daniel’s least favorite of appointments. He hates his eyes dilated and has had it done so many times. It is long and boring and just a nuisance. In the past he has had a few flecks of blood that were due to low platelets but resolved as his numbers got better, but because of this he had to come for eye visits every couple weeks and has really grown to dislike this department, so this time when he took the same pictures as always and we got a very different reaction than ever before my heart dropped immediately. Geez, what now. Don’t get me started on the fact that we are three days away from 1 year from diagnosis day. Don’t give me bad news. But being around this place as much and as long as we have now you know that pause, you recognize that silence and you know something immediately isn’t right when the doctor leaves the room and comes back and tells you they have called for an immediate specialist to come in because something doesn’t look good. What now? Sure enough, we do not have all the details yet but it looks as if Daniel’s stubborn CMV has found it’s home in his eyes. This is one of the organs that CMV typically targets. Eyes, lungs and gut. He has had it in the lungs and it seems to have cleared, and so far no sign of gut issues but now his eyes and this is the most worrisome of them all. To me especially. After all he has been through we are not going to let him loose his eyes. I am now freaking out and not hearing anything. The highs of our earlier good news is now gone. I actually can not hear a single thing being said in the room. Daniel is listening for the both of us. A specialist from next door at University Hospital has been called in quickly at 530 after being sent pictures from the doctors cell phone (He rode his bike over) and seemed to quickly determine that this is what it was. They have told us what will happen but I stop all the talk at once. Daniel is comprehending it all but I know it all has to go through Dr. Craddock and BMT first. No one knows Daniel and everything about him and his care like them. They literally know every cell in his body. It is now after 6:00 and we have moved upstairs for Dr. Craddock to meet us after the clinic has closed but he and Julie our regular nurse have stayed to try and explain and calm me down. It is not great. We will know more tomorrow after Daniel has to go for so not so fun tests. He will need to have needles in his eyes. My G-d this is a kid that couldn’t stand needles and now you are going to tell me they are going to stick them in his eyes. I really was surprised at how much I was able to handle up until this point but I think this is my limit. Daniel very rationally discussed a full course of tests and treatments to come with Dr. Craddock while I was pretty much in shock. I was so amazed and how proud Daniel single handedly took over and advocated for himself. He needed too for his sake and mine. They discussed different options and one very likely is that we may be admitted for different systemic treatment tomorrow or maybe Friday. I am still processing this and not really thinking about it. Right now we are testing out a valium to see if it calms Daniel down . Not sure if anyone remembers Daniel’s paradoxical reaction to Adivan a while back. Hopefully it has a calming effect tonight and then tomorrow when he has to go for a test to check if his eyes really do have CMV in them or if it is something else and we will decide the course of treatment from there. I think I will be taking the extra Valium to try and sleep tonight. I promise to keep you all informed but can not handle a single other thing tonight.
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July 2016
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