What a day, What a day! And it is only noon. I swear it is just like when the boys were in Kindergarten and I sat looking at the clock waiting until pick up time. Except this time it is worse because Daniel has a phone and texting and he I not responding to my checking in. He likely turned off his phone like he was supposed to and now I can’t reach him. I swear I am going to wring his neck at the end of the day. But in all seriousness after putting in a very tough day on Monday and manning up to a load of immunizations many, many restrictions were taken off for Daniel including the much dreaded mask and after a day and a half of discomfort and achiness he was as excited as a little school girl to get to class bright and early. And bright and early it was. He was greeted by Mr. Hay, Upper Division Head and I swear it took everything in him to not run in and hug everyone. As well it took everything in me to not run after him and swat everyone away from him. BUT I resisted and sent my little cub on his way. Thank goodness he didn’t see me linger in the hallway for 15 minutes crying as the whole school assembly started and I heard Mt. Hay welcome back the whole school and Daniel specifically. I heard him make a specific request to make sure to stay away from Daniel if you are not healthy and that you should not be at school at all if you aren’t well and felt that that was my time to go because they were going to watch out for him. I made myself leave and then sat in the car and cried in the parking lot. I know he was surrounded by his friends and happy as a clam (but also surrounded by germs- iy yiy yiy). My phone rang and I stopped crying long enough to answer and it was Amy waiting in the parking lot to make me walk and distract me. Off we went for a long enough walk to talk about the far enough future to stop me from crying and see the possibilities of getting through the morning and out of the parking lot. By the time we finished our walk on the beautiful path I had more fresh air than I have had in a year and the possibility for the day was open to me. I realized it was time to call and remind Daniel to take his pills for the morning and now realized he is actually abiding by school rules and has turned off his pone. I have called his adviser twice to check on him and am trying my hardest to not drive over to the school to check on him. I do not know who it is going to be harder for to get through the day him or me, but I would put money on me. Good thing there is enough laundry and dishes to get me through the day. Funny how that never seems to run out. Just like kindergarten, I can’t wait to hear all about his first day. What is new and what he is excited about for the year. My guess is he will be asleep by the time we hit the front door. My plan is to take him to Dairy Queen for ice cream after pick up. A tradition we have always had and a restriction he has also had for the year so we will see if that works out or if he is so exhausted that we just come home for nap. That is of course after I lecture him about not answering my texts. I bet he was so glad to be away from me all day but the feeling was not mutual and it is only noon. I have no idea what is going to fill my days when he is really out of the woods and I don’t have to worry about him anymore…oh wait , when does that happen.
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Today we went and celebrated a friend we have met along our way this year. She has been strong enough to overcome her bumpy road not once but twice. When a slideshow played along with songs highlighting her bravery and strength I barely kept it together…okay I didn’t keep it together at all. This was her LAST DAY OF CHEMO celebration. I can only imagine the day we will say we have conquered. We have had so many milestones but I guess that our 1 year mark will be our time. It was a beautiful party to celebrate life. After that Daniel went for another last minute celebration to a friend’s birthday party. He had a great time going for dinner and ice cream and I was completely freaked out about what he was eating and what he was doing and if he was making good choices. Now that he is going to be emerging back into the outside world I need to start figuring out how to let go. It is like Kindergarten all over again.
And just like that with barely a moment to spare Daniel will be returning to school with his classmate on time, on the first day on his sophomore year. His diagnosis came the first day of summer vacation before he was to start high school and he proceeded to miss his entire first year, and lo and behold he has beat cancer and has made it back to his life in record time. Man, is he amazing. He wasn’t expected to return before 1 year after his actual transplant which was November 12th. He is at 9 months post transplant. In the past week I have come across several people that have had transplants or family members that have had transplants and none of them have recovered this fully or this fast. All of them have looked at me with terrified eyes and even pity when I have told them about Daniel starting school next week. They have asked if I am sure he is ready or if it is okay or the right time or right thing? I don’t think anyone of them had been in this good shape this soon out of transplant. Despite all of Daniel’s obstacles (and he has had and continues to have many) he is so damn great I can’t believe it. In fact the more and more I see how not good others have done and are doing the more and more terrified I am getting. Do I start waiting for the other shoe to drop now or are we done. Has our shitstorm passed and we are done and we just got overloaded on the front end and overcame? I don’t know anymore. I am riding such a high right now and so overwhelmed with jumping into life again I am not even sure where to begin. It is like opening up a door and the sun is so bright that you need to hold your hand over your eyes and take a breath before you step out the door because you are not sure what is outside the door. We are truly coming out of seclusion. We have been in some form of isolation now since last June and this will be like a true coming out all at once. Yes things are going to change . First and foremost, above all THE MASK COMES OFF, and good riddance. I know Daniel couldn’t be happier about this. Now honestly, I think if we are in some questionable places that make me nervous I am slapping that puppy on him. I think I will forever wipe down movie seats and airplane seats with bleach wipes and may always wear gloves and a mask when I fly I haven’t decided that yet. We haven’t even got to thinking about travel. My head is spinning, spinning, spinning with so many things. I know Daniel is looking forward to many food restrictions coming off but I think we will still be very conscious for a while. We are not tempting fate. We have all learned many things about best practices in healthier eating for Daniel and what is not good for him. I think several things we stopped eating should be gone from our lives forever. Fountain drinks, soft serve ice cream, all buffets are still no longer allowed no matter how much he wants them but the things that might make life a little more pleasant for Daniel will be fresh berries and salads and maybe a steak not overcooked to the point of shoe leather. I believe the fact that he will be able to go outside without a mask and play basketball in the driveway or just go for a walk with a friend and not have to be deprived of fresh air is going to make all the difference in the world. The energy he will have will be remarkable and the improvement in his attitude to not have people stare at him in his mask anymore will be like night and day. I can feel a change a comin’. It’s a new day! It’s a new dawn! It’s a new life! And I’m feeling….excited for him to grab it back. Matthew came home from a big morning appointment getting his braces off and all I can say is WOW! That is a milestone in itself. He is so grown up and handsome. We had time for lunch and some nice conversation together alone and even some back to school shopping. Today was a huge day of celebration (although you would have never known it really). Today marked 9 months since Daniel’s Bone Marrow Transplant. If you think about it , it is remarkable how well he is doing. How amazing he looks and is feeling. We had a slight side step with an impromptu many hour appointment at the eye clinic because Daniel was having some weird stuff going on with his eye. We don’t take any chances or think twice about checking everything out . Does it mess up a day, yes? Was I grateful I went when after 3 hours and extensive tests that ensured that Daniel’s CMV is for sure gone and his symptoms he is having are just some residual obstruction from Monday’s procedure, HELLS YES! With that out of the way Daniel went to work out then for dinner with his Brother while Rob and I went to a kick off dinner for a Golf Tournament this upcoming Friday. Our niece Alexis is organizing an annual event that benefits Brent’s Place that is ironically an extension of Children’s Hospital that provides a safe clean place for children and families to heal during and after chemotherapy and after a bone marrow transplant. I am so thankful that we live close enough to the hospital(within 20 minutes) and can provide this environment for Daniel ourselves. I have come to know many of the families having to live at Brent’s Place while we lived in the hospital over the last year and am amazed at the resilience it takes to be away fom your home and own resources as long as many of them are. One that comes to mind in fact has lived there away from her home and family over 450 days. Can you even imagine? At least Rob did my laundry and brought us food most days. Therefore, Rob and I decided to sponsor a team in honor of Daniel knowing how fortunate we have been and we would like to lend our support in this small way. We look forward to helping Alexis raise lots of money for Brent’s Place and all they do for these families so they can concentrate on just their kids needs. Yesterday we got great news that we are into our third week of negative counts for CMV. I think this is the longest we have gone negative. Great, great news! Honest to G-d the Doctor is not even sure of a plan and we are going to take it week by week at this point because even they have not even been in this scenario so I can’t tell you what the plan is going to be from her for his CMV. We are flying blind from here. I know not reassuring but we got nothing else for now. As far as the lymphocyte function test that tells us about if he will be ready for immunizations and school, well we had a bit of a miscommunication with dates and I can just hope we get the results by next week since that is when school starts. Once again today is at 9 months post transplant and we never thought he would be leaving the house before a year post so I will not complain. This week has been another long one. I guess these are what you call the dog days of summer. Is that want the saying is? I don’t know what it is? The heat? The not knowing if Daniel is rid of this virus. My sister says I am in a transitional phase post cancer which she found harder than her actual treatment…I don’t know, but I am certainly in some phase. I am looking forward to several fun things in the next coming weeks, so that will be positive and hopefully get me out of this funk.
Daniel I know had a great day. He has been looking forward to today for two reasons. This morning he woke up early (for him) and headed to school to shoot hoops with some friends. He hasn’t done this in over a year. In fact two out of the three friends he met he hasn’t seen in over a year. One of these two in fact I have missed spending so much time with at our house over the past year. It felt great to have this moment back again. Daniel was so happy to get going and played so long that he ended up overdoing it and was drinking too much and running too much and didn’t eat enough and before you knew it, ended up throwing up . He made it to the garbage can which was good, and the boys didn’t seem to get to freaked out. I don’t think it upset Daniel and I think he learned immediately that he needs to eat more before playing that hard . He wasn’t too upset and we immediately laughed it off and went for lunch. He told me right away what a great time he had. Second great thing about he day was football started. Guess I will talk to him again in February. We are filling time and keeping very busy waiting for the results of the important lymphocyte test to come. It is supposed to take two to three weeks for the results and we are somewhere in that window. Again this is the indicator of whether or not Daniel is starting school on time or not. Either way he will be starting school it is just whether or not he is actually going to the classroom or not. He has been doing his summer work, and is very ready to go back. Meanwhile we are busy, busy, busy doing this and that to pass time. He didn’t get to go to camp or travel or even get to go swimming in a pool this summer again. Two summers in a row now but we are having fun I think. I am trying to give him a little fun without spoiling him but sometimes it is so hard not to deny him anything he wants. He is lately very devoted to reconditioning. He recently picked out a new weight set that he will use in our newly made exercise room that he is using everyday he is not going to the wellness center . He is working on reconditioning so that joining the basketball team is a possibility. Working towards a goal has always worked for him.
Today we went on an impromptu field trip to the Make-A-Wish office to see what it was all about. What a fantastic place. It was like walking into a wonderland. What they are doing there for children is truly a wonder. It is decorated to create a magic for any child. Maybe not so much for older boys, but it was beautiful. The women there were so kind to Daniel and excited to meet him and glad to see him looking so strong and healthy. To see all the stars representing all the wishes granted made me very sad. There were thousands and thousands of stars and although that meant just as many wishes that meant that many wishes that needed to happen. Happy and sadness all at the same time. I am so glad this place exists to give kids and their families a small moment of happiness for all of their struggle. Each one is a star in their own right. Today started early, early with a new month of eye procedures. Only one month to go. Geez, that sounds like forever. We can only hope that it is as successful as intended. We will find that out a couple weeks after he finishes his treatments and goes for the fancy radiography pictures again to see if the CMV retinitis in his eyes has completely gone away. It is really a clinical diagnosis so the pictures will have to be the test that show that. Next we drove next door for immediate weekly infusions but this was our long infusion. It happens once every three weeks. To the we finished 4 hours and rushed down to Seacrest Studios. Daniel’s show was funny today. His first real PREVIEW of the football season. He is raring and ready to go. He was sans Mark Haas (his Sports Caster partner) but was in his element. He made some bold predictions for the year, but #1 was lot’s more D[P]R (that is Daniel’s Preview Review show). Not quite sure how this is all going to fit in with going back to school but we will make it work. My highlight was brother Matthew (with Uncle Ricky) stopped by the show. At dinner time Matthew actually admitted that It was pretty funny. Next up meeting and asking a question to the current Governor of Colorado, John Hickenlooper. It was great. Full studio crowd and Daniel asked an excellent question that impressed the Governor. Daniel did his homework, looked up some facts and asked some educated questions. They weren’t all related to football. One related to Daniel so at least he sticks to whats important. Did you know that Governor Hickenlooper had a beer named after him on January 7th, Daniel’s birthday. Huh??? Once the Hickenlooper interview convened, the crowds swarmed…but not around the Governor around Daniel. The newspaper, the tv news reporter waited patiently for their turn to talk to Daniel. The buzz is always around Daniel in the studio and he grows more and more comfortable and confident in front of the camera. He enjoys it so much and it is clear that he can easily command a room and an interview. With his focus and determination I have no doubt he will be able to achieve his career goals he is setting and enjoy every second of it. What a joy and pleasure to see. I laugh with a tear in my eye at the fact that as an old man he will actually be able to say he has been doing sports reporting since he was 14 years old. Now that is one long career and I can’t wait to see it. After going to a movie we drove out to the hospital to share with Gilly how delicious the late night grill pancakes are. Nothing better than seeing these two enjoy time together. They finished their summer math packet of work today and were so happy and proud of themselves. What better way to celebrate than with friends and chocolate chip pancakes.
Days just seem to really be dragging this week as Daniel unfortunately went back to treatment doses of his medication from maintenance. This means twice a day treatment rather than once a day and you would think it is no big deal but it has been remarkably exhausting. Daniel has been oddly resistant this or his week and is a bit frustrated with the regimen. I don’t blame him. I have to admit it is getting really old. Between the prehydration and the post hydration and the timing and the pills an hour before eating and the taking out the meds to warm up so many hours ahead of time. Blah blah blah blah blah , I don’t blame him at all. While I try to give him independence and leave him in charge of his own stuff he seems to be regressing and wanting me to take care of it all more and more I was very upset the other day when he impulsively said it was to hard to do it all and that he wanted to go back into the hospital because it is just easier there. I quickly shut that down and informed him that wasn’t happening. We will keep plugging away at the process. Meanwhile we will continue twice a day treatment until we have a negative cmv for two weeks in a row and then consider tapering treatments after that. I think maybe we jumped the gun too early last time. We will see again next week.
On Monday we got some great results that were a preliminary indicator that Daniel may be ready to return to school sooner than later (fingers crossed). His B and T cells are robust and the doctors are very excited about the level they are at. The level indicates that we can low do a lymphocyte test that is very precise and very expensive and so they don’t just do it frequently. This test will take a few weeks to yield results. I will draw his blood tomorrow morning and drop it off on the way to his eye procedure and we will wait. What the results will tell us is if Daniel is ready to start getting his baby shots (in theory). These will be the beginning of his immunizations . Remember he has the immune system essentially of a newborn. Daniel is way behind schedule and should have had these already but the CMV has held him up. What this milestone means to Daniel is it means he will finally get to take off his mask and go back to school. This means everything to Daniel. Never has a teenager wanted to start school like Daniel. He may not admit it, but he wants to more than anything. It will be a modified start to the year at best but technically we didn’t expect him to go back until after November which was a year post transplant date so August/September will be an early gift for us. I did spend my morning yesterday visiting with some friends as they came to the hospital after I put a call out to please come and donate platelets. I donated and a few troopers signed up to help. The impressive part was all five were first time donators which was very awesome and brave. Two out of 5 couldn’t complete their donations but it was the thought and intentions they came with that counted. It was wonderful to chat with these friends and see them after not seeing most of them in over a year. I was reminded that my friends are still thinking of me and Daniel and following what is happening and are still interested even though I still don’t get out to see anyone very much. I try to remind myself that I used to be quite social and now I don’t really leave the house. I made a call today to help myself (and my family). As I thought we were this far out and it was going to get easier I realized it has not on many levels. With adding three days a week going to the wellness center for Daniel to recondition and the eye recovery and the hospital appointments and this and that I still haven’t figured out how to efficiently get to the grocery store and cook all the fresh meals that we need. Daniel needs to eat and drink constantly and the amount I need to clean is overwhelming and so time consuming. I am going to try and enlist some help and get some catered meals. We will see if someone can help with meeting Daniel’s food restrictions and our requirements to alleviate some stress and make our life a little easier. Hopefully this will give me a few minutes to I don’t know …do more laundry. No seriously. This may help more effectively put some weight on Daniel nutritionally with a lot less brain damage on my part. Hey it is worth a try. Well what crazy day we had today. But first a recap of Tuesday. Daniel wanted to go fishing so we got an okay to go and we went. We had perfectly pleasant weather and Daniel got his first mountain driving experience and what a great spot we found to spend the day. Mt. Evans Trout Fishing was a wonderful place to spend a fun day together and enjoy each other more than ever. Fishing is something Daniel hasn’t done in a long time and I haven’t done in even longer. Daniel has gone a few times with his grandfather (my Dad) and it is something that we have enjoyed once or twice but not in more years than I can remember. Daniel and I camped many years ago and loved it. It is not something that Rob or Matthew ever liked or were interested in and even today Daniel and I said that we should do it more often. I think after today it is definitely a plan. No doubt we like our luxury but something about the relaxing calm nature is something the two of us alone share. So we spent the whole morning quietly fishing and talking and laughing and having a great time. I can’t wait to do it again. We brought home a bunch of delicious rainbow trout that we enjoyed very much for dinner. Food never tastes better than when you catch it yourself. I called it a perfect day until we got home and found out Daniel’s CMV had creeped up to above negative again. I know Daniel was upset to hear this and he is now going back to needing a treatment dose of his Foscarnat instead of maintenance dose. This will be more time intensive and another step back, maybe a bit sideways but I am not going to let it upset him too much. Not as much as it upset me. After a day of rest and readying for a day back at the hospital today for another eye procedure (it seems like a while since we had one, but it has been only last Tuesday) I never would have imagined a day like today. We were up at the crack of dawn to have his eyes done. No problem, in and out and handled like a champ. Back at University Hospital eye clinic is quick and easy. Then we rushed over for a Broncos business meeting. He rolled up in his dark shades ( because of his eye sensitivity after his procedure) ready to talk and he got down to the nitty gritty in no time. When the meeting was over and we were headed to the clinic for blood work and we got a call from buddy Mark in the parking lot. Mark was in need of a driving partner for his remote control race car team pronto for the MorganAdamsFoundation event being held outside. Mark has been there for Daniel and his show and his goings on and in for months , so in Mark’s moment of need who else would he call on to help out but Daniel. Instead of heading up to the 7th floor it was down instead and out the door. Daniel was in a quick walk and then a slow jog to Mark in the parking lot. He was greeted with a quick high five and a remote control. The channel 4 team sped to the finish line in first place, with a hysterical interview on strategy on running a clean race. He was thrilled to be able to take home an awesome remote control car, sit in some luxury vehicles and meet some media personnel. Before he could wipe the milk off himself in his victory lap he met some sports media well known to Denver. I couldn’t have been happier to get out of the heat when Daniel proudly walked him over to the Seacrest Studios and explained what he did and what the studio does for programming at the hospital. He was very proud and confident in his explaination and with that this sports caster was very impressed. Daniel has invited him to be a guest on his show and next week and in turn Daniel has been asked to be a guest on his KOA radio show. Stay tuned for more contacts being made in Daniel’s future. A quick visit to the clinic and then home for a very long afternoon nap. I know Daniel needed it and surely had very good dreams. I am so excited today. I couldn’t be more excited to report how great things are going with Daniel and his numbers. Although once again we are waiting for a negative on his CMV count tomorrow at 4:00 I have no doubt in my mind it will be negative. At our weekly transfusion today we got a second week in a row of very strong and positive readings on how his blood and cells are responding. He has been about three weeks or so off of the Ganciclovir now and it is pretty much out of his system and his body is responding great to the new Foscarnet. His white blood cell count is in the normal range now and steadily climbing and is almost normal and his platelets are also multiplying on their own now. His lymphocytes are also coming up nicely. I find myself smiling as I am writing this entry. I am amazed at the human body every day. I must have told Daniel 10 times today what a good job his cells are doing. Next week is a big test. A test that will test his B-cells and T-cells. Although it will take a few weeks for results to come back, this is a biggie. It is a milestone that tells us where his new immune system is in terms of coming back strong and will he be able to finally reenter the world and take off his mask. This is a huge one folks. The mask is an enormous hold up from quality of life. He is so ready to be done with the mask and the inability to breathe and the stares and looks that come with it. This has probably been the worst part of being out of the hospital but not really being ‘normal’. It is why he doesn’t really like to go out and I can understand. I see how everyone looks at him and I see how he feels. I see his feelings hurt even though he tries not to let me see. Brave face with the mask my brave soldier.
The only downside to our visit wasn’t really a surprise. I have known that Daniel hasn’t been gaining weight. He hasn’t been losing though which is great but not gaining has been a real concern of mine for a while now. Well it finally was addressed today. Daniel should have a BMI (Body Mass Index) of 20 but his is 3. Yikes! I knew it was bad, but 3. So we have to refocus and get down to work. It is not that I haven’t been working overtime in the kitchen but some changes need to happen to help put some pound on the kid . We need to get into the triple digits here and I am willing to try anything. This is truly a Jewish mothers biggest dilemma. I have my work cut out for me, especially with all the food restrictions it is an extra challenge. Tomorrow Daniel and I are celebrating with a getaway together and driving to the mountains to a special fishing spot. Stay tuned. I am positive a story will follow. Friendship that has been around over 40 years. These three people have been Rob's friends sinse grade school or Jr.high and ever since. And each and everyone has taken time from their day, every single day for 13 months to talk to Rob and support him since Daniel has been diagnosed. Everyone of our friends and family has had their role in this year and none is more important than the other, just different. These three however have been instrumental in holding Rob together on a daily basis. Honestly, they have probably sooken to him more than I have in the last year. I know they have been such a strong support system for him and today he wanted to thank them and take them for lunch with Daniel and Matthew and myself joining them to show our appreciation. Over the year Rob has told me how much it means that he talks to them everyday and for him to get together with them and thank them like this will never be enough for him but it meant a lot to him. There was lots of laughing and stories from when they all grew up (some grew up more than others ;) ;) ) and it was great for the boys to see how their Dad has had such meaningful lasting friendships that stand the test of time. It makes you wonder what is really important and who is really there for you. Thank you Andrew, Portia, and Scott for being there for Rob and showing your concern for me always as well. You all set the model for true friendship.
Whew, it has been a thought provoking couple of days. Sitting here at the hospital this morning while Daniel gets topped off with some fresh platelets and is having a nap. He is premedicated with Benadryl before so is settled in for a little nap and I am having a moment in quiet thought.
Why is it so hard to ask for help and what you want? Maybe it isn't for everyone, but it is for me. So many have been wonderful to offer meals and help through the year and unfortunately I have had to decline most of it. Daniel has had so many food restrictions and being in isolation we have had to say no to almost every invitation offered for help. It has been hard to say no to people but harder yet ro say yes to people's generosity. Why is that? Now that we are finally through then eye of the storm I am starting to see the clearing on the other side. There is wreckage in the path and lots to be cleaned up but I feel it is time to get started. As I made my first call to an organization that may be able to provide some help along the way with some fun for Daniel if he wants it maybe next summer in the way of a camp or retreat I found that as much as our family needs time to heal and needs help my way is finding ways to stay busy and help others. I don't know how I will apply my energy or where. there are so many places I learned are in need. Do I start my own organization. Help an existing one. I don't know YET. Daniel's needs still take the majority of my days, but I am starting with a platelet drive on on July 28th. I know that is an immediate need at the hospital I can ask those that want to help me can help with. Baby Steps. The next thing I ask is a cure for Cancer. So first we hit our second negative for CMV and second we hit the door and headed home. It was so great to sleep in our own beds and shower at home last night. All I want to do is lay in bed all day and take 5 showers and yes actually watch the news which I never do at the hospital. I know that sounds weird. But alas today will be busy if I can ever get going. Today will be busy with unpacking, readjustment to the house and restocking meds and food but only after getting the newest home treatment going. Th e new protocol will be once a day home administration (woohoo) of the Foscarnate drug. This isnwhat he had in the hospital. The first week was three times a day, then the second week was twice a day now after the second- reading of CMV he is able to come home for once a day treatment that I can administer. because he was monitored so closely for the past two weeks and Thank G-d showed no negative side effects that everyone was so worried about he is now able to come home for the remainder of the treatment. he will need to stay on this treatment till at least he is finished with his eye treatments which is through August and then we will see what happens after that. unfortunately each day's treatment is at least 90 minutes with an hour of pre hydration and an hour of post hydration so that is a pretty good chunk of time each day. it is at least at home and that is much better than being in the hospital so I am not complaining (much :/). Daniel still also has to continue his g-csf or neupogen which is the synthetic drug which helps keep his AMC or bone marrow count up while he is on the other drug hopefully this will be reduced soon. The Ganciclovir that he was on since January that he is now off of because this new drug is replacing it was much more suppressing to his bone marrow. he has been off of that for about 2 weeks now and in about 2 weeks from now we should start to see the bone marrow having a booth on its own starting to come back. overall, all roads looking good for Home healing and hospital visits will be down to once-a-week regular infusions and an extra visit for me delivering blood draws that I will do at home. when I take in these samples once a week they will test them to see his levels of everything and make adjustments from there to his daily other meds and that way I can make adjustments at home instead of him having to be in the hospital for them to do it. luckily they are confident enough in my ability and our ability to take care of all of this at home. they have done a good job of training me to do the blood draws and adjustments in maths at home so that we can thankfully stay at home.
Dorothy from The Wizard of Oz was correct there's no place like home. I think I forgot to write a blog while we have been at the hospital. Time is flying and going so well I haven’t had much time for sitting and writing. Even though there has been nothing eventful, it is always busy, busy, busy. Whether it be cleaning up or getting food or doing and activity I am always running doing something. We also try to walk as much as possible. Most importantly Tuesday night we got Daniel’s test results back letting us know that the new treatment drug Foscarnate is working and Daniel is now NEGATIVE for CMV (virus). This has been the goal all along, and gladly he has had no negative side effects from the treatment. His kidneys are strong and flushing it all through. This was our greatest fear which we have bypassed thank G-d. He is now moved from three a day treatments to twice a day treatments. And if we get another negative result next Tuesday we should be able to go home with once a day treatments. I tried to bribe the docs to let me take him home for twice a day treatments but it was a no go. They are still needing to monitor his levels of electolytes and every imaginable everything many times a day. His potassium and calcium and magnesium is fluctuating all day and they adjust for it as often.
Yesterday was a great day and he had lots of extra time (we have lots of this) for a visit from best buddy Gilly. They actually worked on their summer math packet together which was so cute, and then disappeared to play their favorite computer game in the family area. They are both a little obsessed with this game they play all the time but have never had a chance to actually play it physically in the same room. Another highlight was a find from Target. One thing on the dreaded restriction list is Slurpees. One of the things Daniels misses most is Slurpees. It is because of the machine and the germs that accumulate in them. But I found a cup that makes virtually the same thing. Score one for mom!!! The only downside is the cup needs to freeze first and refreeze in between servings. So no big gulp size servings, but nevertheless it is a yummy treat a few times a day. It keeps me running back and forth to the freezer in the family room at the other end of the hall that is for sure. I get my exercise steps in and he is a happy boy with brain freeze. WIN-WIN! What can I say. I feel we are back to the daily hospital schedule all over again. Predominantly bordom and that is okay. Since Daniel is on the inpatient board all the nurses and CAs are popping in left and right for visits. It is great to see everyone and show off how great Daniel looks and is doing. We are referring to this stay as a short CMV summer camp and sticking to the intention of it being two and no more than three weeks. We are doing a whole lot of nothing and Daniel has figured out how to hook up to XBOX Live and is playing non stop with brother Matthew at home. It is the most they have played together in a long time without fighting. Other than that. Nothing much is going on. My parents are in town and having some visits and we are mostly just having long quiet days.
We are in the far back room on the west wing of the hospital and it is slow. I have met a few other moms and can’t believe what we all go through. Both these mom’s are struggling with their kids back in the hospital after many years in remission. I went to sleep thankful again last night for Daniel’s donor and his transplant and his second life. He is here to make the most of it. I hope he will only spend these few short years wasting it on xbox. I know I will spend my life worrying about his leukemia coming back but with the transplant I should never really have to worry about that. Today he had another eye procedure but it was here at Children’s Colorado and it was with a new Doctor (that looked about 12) and new team of anesthesiologist and in the operating room so after many procedures that we felt we had down pat Daniel and I were starting from scratch to reexplain the perfect cocktail of sleepy drugs and wake up drugs and pain drugs and procedural stuff and it was exhausting but it went beautifully and hopefully will be smooth sailing from here. Daniel really liked the doctors. By late afternoon he was resting in his room in the dark and back to playing his xbox but dimmed down. He did however have an epiphany . He said “Mom, if I don’t go to college for Journalism I think maybe I will become an Anesthesiologist as a fall back. They are rock stars and everyone loves them. “ Okay fine… If you must. Said the not so upset Jewish mother. I can’t even begin to express the pride and joy we felt from yesterday as Daniel graciously and proudly became the OFFICIAL CHILDREN’S COLORADO DENVER BRONCOS AMBASSADOR. It is a mouthful but that is the actual title. He actually has cards being printed. Isn’t that ridiculous. The partnership between the hospital and the Denver Broncos has been a year in the making and Daniel was asked for for this position by none other than the President of the Broncos himself Mr. Joe Ellis. I don’t mean to name drop, but since I know so few in football please grant me some leeway. I have a feeling I best be starting to take nots. I have been joking that I am just the mom and I just carry the bags and drive for the kid, but it looks like he is moving up and if I want him to take me along I better keep up. Anyway the wheels were put in motion long ago with his Broncos Go song and his hard work and persistence with this football fascination is paying off in spades. We were called in yesterday morning to a planning meeting for how the morning would go. ( I held Daniel’s bags) As Daniel was whisked to various meetings an prelims to finalize the plans he has been working on with the higher ups all week. I have been out of the loop and he has been emailing and texting and he is meeting and greeting and shaking hands and they already all know my boy. I am watching with eyebrows raised as he confidently manouvers through this adult crowd of hospital CEOS and Bronco PR people. The moment comes and the Bronco players and cheerleaders arrive and in a fast and furious moment off they all go into the bowels of the hospital offices for what I presume are some private talks that the mothers are not privy to. I stand outside the door and continue to hold his bag. They emerge and rush into the studio with game faces on. I take my place on the sidelines. I am in awe of how stealthily Daniel hosts a game of ‘Football Family Feud’ and his comfort level is higher than I have ever seen it. There are some glitches in the preplan and his ability to punt is fantastic. I look out of the studio and realize there are hundreds and hundreds of fans awaiting for the team to emerge, but he has a captured audience in the studio and throughout the screens of the hospital however it is the players and cheerleaders that are eating out of the palms of his hands. He can command them and yet has managed to put them at ease at the same time and these people he has idolized are eating out of the palm of his hand as he asks them questions with his Steve Harvey moustache on his mask. Although it is rushed for time constraints it is obvious that he has done his job. He made the kids all laugh and the Broncos have a great time. One of his goals was to make them want to come back and you can tell that this has happened. I will try to see if I can find video of the game but a definite highlight was this: as one player and one cheerleader stepped up to answer a question Daniel Asked the cheerleader what has been their favorite game and asked each player a relevant question pertaining to their charity or background…until Brandon Marshall stepped up. Daniel very seriously asked Brandon Marshall, what is the best part about being on my fantasy football team. It cracked him up and the entire audience. This kid is a natural. And with the close of the game as Miles the Mascot won it with a strange goat noise (don’t ask) they all rushed into a packed atrium 4 floors high. Probably more adults than children. More staff than patients. It is truly evident the people love their home team. They were ushered through the crowd and as I tried to follow them up to the stage, I was lost in a sea of orange (and blue) and couldn’t get anywhere close to Daniel. I had to trust he would be fine, all the while completely freaked out by the crowd, knowing he should not be anywhere near this many people but seriously, how in the world could I deny him this. In my mind there is a bath of Purell awaiting him when we get home. Although I can barely see him through the crowd I start to hear his voice in the crowd. He is now sharing introduction duties of the players in front of 4 maybe 500 screaming fans. I think he needs to work on amplifying his voice but I know this is certainly not due to nerves. After the introductions and pictures the crowd swarms for autographs and I freak again about too many people and germs. At this point I realize it is a great time to use his new position and maximize. I grab him and we head to the back of the autograph tables for no wait signing. I don’t know why he didn’t think of this sooner. When the players leave the crowd disperses pretty quickly . They were all so fun and so gracious and I can’t imagine how overwhelming the day was for them. They brought a lot of happiness to a lot of people today and so, so much to Daniel . We met several of the Bronco staff and many of them already knew of Daniel before even meeting him. Rob and I were so proud. He is laying a beautiful foundation for where he wants to go with his life and this is just the beginning of his introductions to all of these people. We went home and showered our germs away and had a relaxing couple hours talking about how fun the morning was as Daniel programmed all the news channels to watch afternoon and evening coverage.
He finished the night by going to his friends house with his group of friends he hasn’t seen since New Year’s Eve. They did silly boy things I don’t even want to know about but when I picked him up at 11 pm ha had almost no voice and was beyond exhausted. He rode all the way home saying that today was definatly in his top 10 of all days ever. What’s better than that? He said he was ready to go back now to the hospital because today was so great. Since I took the last night home to go out for dinner and a movie with some girlfriend (I am not saying which one but it rhymes with Tragic Bike) I was beyond exhausted as well from the day but morning came and we were on our way back to the hospital. I knew coming in that the 7th floor is swamped. I have been told that they have 15 kids coming to transplant this summer and they are busting at the seams. I personally think this is a great thing because that means 15 kids have the chance at a full cure of disease and this should not be seen as anything but hopeful. But the bad part is that 7th East is only so big and there is no room for us. Since I knew we have been coming back I have been fishing for info about rooms and availability. I know this is not a hotel and I can’t just make a reservation at will nor can I bribe my way in…believe me I tried that as well already. The other good news is that we are so far out post transplant that we are not high priority for BMT isolation when there are very infectious kiddos in dire need. So we became overflow. We were pushed to the right to the West side of 7th and I felt like I was going to a black hole. I had never travelled to this side before. I had always gone left or to the clinic. I didn’t know what was to the right. It is other blood cancers /hemotology , sometimes surgical but right now Oncology and BMT is so overflowing that both East and West are Oncology and BMT and I learned that the far rooms on the west side used to be the first BMT rooms. So we were told to check into room 711 and when we walked in I swear we hit the jackpot. High rollers baby!! Woot woot. Maybe this Ambassador position brings it’s perks. Nah, just kidding, but this is the brightest , loveliest room we have had yet. We are on the far corner room with an anti/outer room, large bathroom and corner wrap around high ceiling windows. I don’t want to or plan to be here long, but if this is our room, I am glad it is nice and spacious. We have certainly tried enough of them. I think this our 6th or 7th not including the one terrible night in ICU. We are very inconspicuously in the very far corner and it seems to be very, very quiet and I like it that way. There is no BMT kitchen and there is no where to keep our own food clean and fresh enough for my liking so we will have to figure something out with eating and meals. Daniel does not like the room service so it may be a challenge but this should be the worst of our problems. We will figure it out, probably just in time to be out of here. We have new lego sets to keep busy (including a 4000+ London Bridge), we have summer homework, some binge watching and movie franchise sets to get through. Plus it is shark week coming up. I hope for nothing exciting to happen with this treatment and to just keep exercising every day and just do our time. He will also be working on his Ambassador duties and claiming all the fame of yesterday and I will hold his bags as long as he will allow me to. I can’t even begin to express the pride and joy we felt from yesterday as Daniel graciously and proudly became the OFFICIAL CHILDREN’S COLORADO DENVER BRONCOS AMBASSADOR. It is a mouthful but that is the actual title. He actually has cards being printed. Isn’t that ridiculous. The partnership between the hospital and the Denver Broncos has been a year in the making and Daniel was asked for for this position by none other than the President of the Broncos himself Mr. Joe Ellis. I don’t mean to name drop, but since I know so few in football please grant me some leeway. I have a feeling I best be starting to take notes. I have been joking that I am just the mom and I just carry the bags and drive for the kid, but it looks like he is moving up and if I want him to take me along I better keep up. Anyway the wheels were put in motion long ago with his Broncos Go song and his hard work and persistence with this football fascination is paying off in spades. We were called in yesterday morning to a planning meeting for how the morning would go. ( I held Daniel’s bags) As Daniel was whisked to various meetings an prelims to finalize the plans he has been working on with the higher ups all week. I have been out of the loop and he has been emailing and texting and he is meeting and greeting and shaking hands and they already all know my boy. I am watching with eyebrows raised as he confidently manouvers through this adult crowd of hospital CEOS and Bronco PR people. The moment comes and the Bronco players and cheerleaders arrive and in a fast and furious moment off they all go into the bowels of the hospital offices for what I presume are some private talks that the mothers are not privy to. I stand outside the door and continue to hold his bag. They emerge and rush into the studio with game faces on. I take my place on the sidelines. I am in awe of how stealthily Daniel hosts a game of ‘Football Family Feud’ and his comfort level is higher than I have ever seen it. There are some glitches in the preplan and his ability to punt is fantastic. I look out of the studio and realize there are hundreds and hundreds of fans awaiting for the team to emerge, but he has a captured audience in the studio and throughout the screens of the hospital however it is the players and cheerleaders that are eating out of the palms of his hands. He can command them and yet has managed to put them at ease at the same time and these people he has idolized are eating out of the palm of his hand as he asks them questions with his Steve Harvey moustache on his mask. Although it is rushed for time constraints it is obvious that he has done his job. He made the kids all laugh and the Broncos have a great time. One of his goals was to make them want to come back and you can tell that this has happened. I will try to see if I can find video of the game but a definite highlight was this: as one player and one cheerleader stepped up to answer a question Daniel Asked the cheerleader what has been their favorite game and asked each player a relevant question pertaining to their charity or background…until Brandon Marshall stepped up. Daniel very seriously asked Brandon Marshall, what is the best part about being on my fantasy football team. It cracked him up and the entire audience. This kid is a natural. And with the close of the game as Miles the Mascot won it with a strange goat noise (don’t ask) they all rushed into a packed atrium 4 floors high. Probably more adults than children. More staff than patients. It is truly evident the people love their home team. They were ushered through the crowd and as I tried to follow them up to the stage, I was lost in a sea of orange (and blue) and couldn’t get anywhere close to Daniel. I had to trust he would be fine, all the while completely freaked out by the crowd, knowing he should not be anywhere near this many people but seriously, how in the world could I deny him this. In my mind there is a bath of Purell awaiting him when we get home. Although I can barely see him through the crowd I start to hear his voice in the crowd. He is now sharing introduction duties of the players in front of 4 maybe 500 screaming fans. I think he needs to work on amplifying his voice but I know this is certainly not due to nerves. After the introductions and pictures the crowd swarms for autographs and I freak again about too many people and germs. At this point I realize it is a great time to use his new position and maximize. I grab him and we head to the back of the autograph tables for no wait signing. I don’t know why he didn’t think of this sooner. When the players leave the crowd disperses pretty quickly . They were all so fun and so gracious and I can’t imagine how overwhelming the day was for them. They brought a lot of happiness to a lot of people today and so, so much to Daniel . We met several of the Bronco staff and many of them already knew of Daniel before even meeting him. Rob and I were so proud. He is laying a beautiful foundation for where he wants to go with his life and this is just the beginning of his introductions to all of these people. We went home and showered our germs away and had a relaxing couple hours talking about how fun the morning was as Daniel programmed all the news channels to watch afternoon and evening coverage. He finished the night by going to his friends house with his group of friends he hasn’t seen since New Year’s Eve. They did silly boy things I don’t even want to know about but when I picked him up at 11 pm ha had almost no voice and was beyond exhausted. He rode all the way home saying that today was definatly in his top 10 of all days ever. What’s better than that? He said he was ready to go back now to the hospital because today was so great. Since I took the last night home to go out for dinner and a movie with some girlfriend (I am not saying which one but it rhymes with Tragic Bike) I was beyond exhausted as well from the day but morning came and we were on our way back to the hospital. I knew coming in that the 7th floor is swamped. I have been told that they have 15 kids coming to transplant this summer and they are busting at the seams. I personally think this is a great thing because that means 15 kids have the chance at a full cure of disease and this should not be seen as anything but hopeful. But the bad part is that 7th East is only so big and there is no room for us. Since I knew we have been coming back I have been fishing for info about rooms and availability. I know this is not a hotel and I can’t just make a reservation at will nor can I bribe my way in…believe me I tried that as well already. The other good news is that we are so far out post transplant that we are not high priority for BMT isolation when there are very infectious kiddos in dire need. So we became overflow. We were pushed to the right to the West side of 7th and I felt like I was going to a black hole. I had never travelled to this side before. I had always gone left or to the clinic. I didn’t know what was to the right. It is other blood cancers /hemotology , sometimes surgical but right now Oncology and BMT is so overflowing that both East and West are Oncology and BMT and I learned that the far rooms on the west side used to be the first BMT rooms. So we were told to check into room 711 and when we walked in I swear we hit the jackpot. High rollers baby!! Woot woot. Maybe this Ambassador position brings it’s perks. Nah, just kidding, but this is the brightest , loveliest room we have had yet. We are on the far corner room with an anti/outer room, large bathroom and corner wrap around high ceiling windows. I don’t want to or plan to be here long, but if this is our room, I am glad it is nice and spacious. We have certainly tried enough of them. I think this our 6th or 7th not including the one terrible night in ICU. We are very inconspicuously in the very far corner and it seems to be very, very quiet and I like it that way. There is no BMT kitchen and there is no where to keep our own food clean and fresh enough for my liking so we will have to figure something out with eating and meals. Daniel does not like the room service so it may be a challenge but this should be the worst of our problems. We will figure it out, probably just in time to be out of here. We have new lego sets to keep busy (including a 4000+ London Bridge), we have summer homework, some binge watching and movie franchise sets to get through. Plus it is shark week coming up. I hope for nothing exciting to happen with this treatment and to just keep exercising every day and just do our time. He will also be working on his Ambassador duties and claiming all the fame of yesterday and I will hold his bags as long as he will allow me to. 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?
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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