Maybe I should write a blog in the morning when I am fresh(er) and not raveged by the day. My apologies.
Well, I guess today was not the day, or this, was not our week to start cutting back on anti viral meds. Instead of Daniel's CMV count being cut in half like we wanted it doubled. SHIT. I actually started to cry at the hospital when the nurse told me today. Damn it. She quietly assured me that it was okay and not that unusual. This virus takes a long time to completely go away and that this increase is,really not significant. They need to see at least a 3 fold increase to make a change in treatment and this is not anything alarming and they actually consider it as no real change. more of a trend. Hmm, that is two weeks rising and one more week and,a trend becomes a pattern. Crap, crap, crap. I am so upset. Disheartened. Again I am always looking forward to moving ahead and closer to getting better and all I can think about is the potential of what may be coming. This is coinciding with me trying to get ready to go away for a weekend for my niece's Bat Mitzvah. I am so anxious about leaving already and although I know nothing is happening quickly I anticipate it all happening at once. He got really sick for the first time when I was in Toronto last year so maybe it is my mind playing tricks on me. I am not superstitious at all, and the last thing I can afford to do is become a pessimist, but man at this point I think I am hitting a wall. I know we are very far from DONE with this year of transplant upkeep or maintenance or whatever you want to call it, but I so thought I was over the hump. I know we are bast the scariest part but I want to just move on to a bit more normalcy. I know I sound like a broken record. I know it is not as life threatening as it was, but there seems to me there is no moving on. We are in such a rut. The monotony of labor intensive days are wearing on us and this hit came as a tough blow. I know I need to trust the Doctors and Nurses that know what they are doing, but they are not the mom.
Maybe I should write a blog in the morning when I am fresh(er) and not raveged by the day. My apologies.
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Here I am finding myself exhausted on a Monday evening after running around all day today. Finally sitting down for a break but knowing how much stuff I have to do around the house before I can go to sleep. I once again am hoping for Daniel’s labs results that I took to the hopistal first thing this morning to be low enough that I will be able to reduce one of his IV meds to once a day rather than two. I am starting to get more than a little concerned about the length of time and beating this drug is taking on his kidneys and bone marrow. That being said Daniel has been feeling pretty good. A bit less energy than he had had before his ANC has been so low again (reminder: due to virus drug) and he is not really working on any reconditioning exercises at all. I think because he is tiring so easily and gets sore so easily. I am sure it will all resolve itself as the virus leaves his body. I hope this is starting with tomorrow evening’s test results.
Running some errands today I realized how beautiful it was outside and recognized all signs of spring in the air. Spring is time for renewal and fresh starts. I would say spring cleaning but I am forever cleaning. I have cleaned out every corner, cabinet and drawer in our home so now it is just constant surface cleaning and when I mean constant, mean constant. I no longer have things clutter my counters but can honestly say I miss being able to open the door for fresh air. We can’t do that because Daniel can’t openly breath the outdoor air without wearing a mask and it is certainly not fair to make him sit in the house and have to wear his mask. Just as we are starting to be able to venture out to a select few restaurants that we know are safe and clean enough for Daniel to eat at, we are confronted with one of the best parts of Colorado and it’s glorious weather. Every restaurant has open air eating. This creates an issue for us, because Daniel can’t be outside without his mask. Mask on= No eating. Crap. We know how Daniel likes to eat and these lunch dates at off hours were becoming a very nice little break for us, now we are losing this. Poor kid is probably so sick of my pathetic attempt at cooking. I DO NOT want to hope for rain people, but next time the weather turns bad, give us a call and we can go for lunch. April showers bring mamas ounce of sanity. Crap. I was so positive that this week was the week that the CMV was going to be gone. But no such luck. In fact, shockingly, for the first time in weeks, heck months maybe his counts went up. Not significantly in the medical world, but in my eyes, it meant the world. Another small step back. Well not really, just a side step, just means a week delay on treatment and basically nothing changes. IV antiviral remains twice a day for another week and we will shoot again for QNQ below 1000 next week. Fingers crossed he will just jump way down and instead of just under 1000 that he will be a negative or unquantifiable amount. Unfortunately, hoping that it was going to be under 1000 this week we were going to be able to FINALLY take a week off this week from our Friday infusion, but again no such luck. when i broke it to Daniel, he just shrugged his shoulders and said "oh well". He is just upset that his appointment is earlier than normal so he will have to be ready to go to the hospital before 9 a.m. OH well let's hope for a big push this weekend and finally get this virus gone...do I sound like a broken record. I feel like I should just repost the same thing over and over. I have a list at in the kitchen keeping track of his numbers over the many weeks since he has been home. I only have room on the paper ro record one more week so I must insist this be its final week taking up residence in his body and on my list. Be gone damn CMV.
This weekend was a very good one for Daniel, he spent lots of time having his friends come over and just hang over. Tonight at dinner he made a point of saying how great it was to have them just be with him. Hopefully all this whole past week his body has been working towards finally knocking out the final bit of CMV gone from his body. The obvious advantage of this of course is having the cytomegalovirus gone the secondary bonus will be to slowly be able to reduce the amount antiviral IV drug he gets. This drug is severely depressing his bone marrow production that doesn’t have a fighting chance at this point with all of the antiviral drug. As soon as the virus is out of his body and so is this drug then hopefully his marrow will start coming back. Around this same time or soon after, he will be completing his tapering of his antisuppresant drug. When this phase is completed, the doctor describes it as his body will begin to unleash his own immune system. This is targeted for around June or July I guess. That is when I suppose he is on his own, with his new cells emerging and his brand new immune system developing. As of Friday we experimentally dropped one more pill of the schedule (twice a day), and after I draw labs tomorrow morning and take them in first thing in the morning, we will be waiting for Tuesday night results to see if we are a go for the start of this exciting transition.
Unfortunately, I haven’t had as good of a weekend. I have been stewing on information I got at the doctor on Friday. Not bad health news. All is good and in fact if the above goes as expected, technically Daniel is right where he needs to be, maybe ahead of the game. I have just been sulking like a baby, because I was told NO. NO NO NO to everything. I asked the doctor about allowing Daniel to do a few things. Things like a driving class, things like a mountain weekend, things like school and a family trip next winter and I got NO, NO, NO. I felt defeated, and punished and discouraged all at the same time and it hasn’t passed. I knew it was going to be a long road. I knew that this didn’t end with the ‘all is clear’ after his last bone marrow biopsy. Parenting doesn’t just end and allow you to get your way because you are tired and need a break. The more I think about it, I am acting like a child having a tantrum that isn’t getting her way. I need to change my frame of mind I think and refigure that once again this is a short period in a long life for Daniel that has a long complicated journey. There will be time for weekends away and family vacations and let’s just end it with …Thank Goodness there will be. That is nothing to be upset about. We now have the gift of time to wait. I would call today the perfect day. We have been looking forward to today all week. Today was color war at Daniel’s school. The year virtually revolves around color war. Color war is ultimately spirit week on steroids for those of you without knowledge of this monumental event in DJDS history. Daniel lived for color war and was always one of the most involved kids you could imagine. He has shaved elaborate designs in his head for years and has shed many tears for wins and losses over the years. In fact his screen saver on his phone and computer are still his final night of color war competition so you can see how important color war is to Daniel. Missing this event is heartbreaking and not being part of it was difficult knowing he wouldn’t be at the school this year. Although the week is filled with fun activites and competitions the culminate tonight at the school, the highlight of the week (in my opinion) is the lip synch competition. We figured it was small and controlled enough to attend and still get Daniel involved enough , yet keep Daniel at arms length from germs. Remember this was going into “the school zone” which to me is the same thing as GERM CENTRAL. After gearing up and speaking to Josh Lake, Daniel’s best teacher friend and school adviser, also leader of color war, I felt confident enough to take Daniel there. We have been looking forward to it for a week. As much as Daniel looked forward to seeing his friends and being back at the school for the biggest day of the year, I was getting to see all my friends after a long time too. Remember these are all the supportive friends I haven’t seen all year either (I forgot to mention many parents go to watch this event as well). When we walked into school we were warmly greeted by the two headed of the school with a wonderful welcome. It was good to be in the halls again. As we walked to the gym I could see Daniel’s excitement growing and was worried it would be too emotional for him. Joy mixed with sadness, bittersweet feelings. All of you that experience color war know that the feelings Daniel must have felt being there but not being able to participate with his best friends must have been excruciatingly difficult. But as we walked through those familiar doors of the gym and kids started approaching, most knowing that there is a no contact rule, their faces seeing Daniel was unexplainable. Then Josh approached and the hug that Daniel has been wanting from him for so long came. Holding each other maybe longer than they should have. It was the only hug that Daniel said he would allow and missed so badly. Then the clapping and chanting and cheering came. Bothe competing teams started screaming Daniel’s name welcoming him back to school. Back to color war and back home. Tears were flowing as I realized this is the place he needed to be today. Then with honor Josh handed Daniel the coveted clipboard and explained the rules of color war and ushered Daniel to the front table. They made Daniel a judge of lip synch. This is huge people. This is like a Daniel Hailpern dream come true. Josh was so exceptionally great and made an extra effort to keep the crowds of kids away from Daniel. Their special bond is so evident and this was so apparent in the way he took care of Daniel today. Thank you so much for your love Josh. The competition was fierce and of course Daniel did not divulge his decision to me. When the competition was over and the crowds parted I visited with some parents as Daniel and his buddies hung out and chatted. Several of us mom’s looked on and were teary just watching how happy and comfortable they all were. I was so happy to see them enjoy eachother but so sad thinking of the time he has lost. I looked at all the kids today seeing how much they have all grown up in a year. I can’t believe how long it has been since I have seen them. These kids are growing into young adults and it happened overnight and for me I seemed to have missed it. They were all so great and warm and welcoming today. When the kids all incesently scream "who's gonna win this color war?" I can confidently answer this time by saying Today, We Did. Many people stopped me to tell me that this was clearly the BEST part of DJDS COLOR WAR 2015. This may be Daniel's most memorable moment yet of all wars. I see an new screen saver in his future.
When it was time to go Daniel and I went to lunch with two friends of mine from the school. My dear friends Lisa and Ronit, my rock solid support that have been so strong for me, Mom’s of Daniel’s friends. We sat for hours with Daniel and had great conversation and Daniel was everybit a part of it. He has had to grow up quickly and can carry on a conversation with anyone. Actually he can talk so much he can probably carry on a conversation with himself. Anyway, it drilled further home how lonely a year it has been and how ready I am for us to get back to our friends. I may not have wrote a blog that Daniel’s CMV is very close to being gone so this is closer than ever to being a reality. Soon, soon. We then went to physical therapy that reminded me how terribly uncoordinated Daniel is and how hard he needs to work everyday to get his strength back. My guess is he will be exhausted tonight but nothing is going to bring him down from his feeling of being on cloud nine. This has been one of our best days in a long time. It reminds me that the comforts of home don’t lie within the four walls which you live but in your friends that live in your heart. I have never felt more welcomed than we did this afternoon. It was so good to be HOME for just a little while. Things are rolling along on a day to day basis. This morning I drew Daniel’s blood and we have bets going as to what his viral count will come in at tomoroow night. This is how bored we are getting. Let me describe our situation. The weather outside is absolutely gorgeous but even though Daniel has never been much of a summer heat type of kid, this summer is bound to be worse. He needs to keep his mask on at all times outside of the house and he can’t stand this because he says it is hard to breathe in it. Plus the sun is not good for him. He is at a heightened risk for secondary skin cancer now as if the pastey white skin wasn’t enough of a problem his whole life. He needs to keep a hat on too all the time which doesn’t help the heat factor. Still we try to get out and walk around the block once or twice aday and get outside in the shade and kick or throw a ball around. He is trying to increase his difficulty level on the elliptical machine which is hard work for him. Hopefully now going to physical ther and apy twice a week will start helping him recondition himself. Ok so all this physical activity accounts for 10 minutes a day, what about the rest of it. ARGH!!!! I know we are supposed to limit our children’s screen time but omg, I am finding this impossible these days. With his new school routine he is doing 5 hours a week wih his teacher and THAT IS IT. Nothing else, no other extra curricular time. He is managing to get all of his work done in this time and not needing to do homework and yes I am stopping nagging him. I am trying to encourage him to try and watch some new series or movies but he is very stuck playing his video games. Between meds and trying to eat and clean and exercise and trying to get him to take a shower which takes forever, a craft seems out of the question and baking isn’t up his alley anymore since he has no interest in eating. It is all very frustrating more than anything all comes down to me sounding like I am nagging him a lot. Oh what a surprise. The good news is he feels good, even though the Gancyclovir has caught up with his system and he can barely keep his ANC over 100. He now needs to get GCSF every day. This will help boost his ANC or at least hold it. Again this is a circumstance of the CMV which we will hope to whip in the next weeks for good. We are so close. Once this virus hits the road we are back in business to building back his immune system. When they told me his ANC today, I could not believe it. He looks and feels so good and all the rest of his numbers are great. You would ecpext him to be tired and weak, but no such thing. He is 100% full of energy and attitude. Which is why we are just homebound and bored. We have turned to bored games (yes I know I spelled that wrong). We have a 1000 piece Chihuly puzzle going that is making me crossseyed, and we are trying to make due. If anyone has any bright ideas, please send them our way, we are desperate.
Please enjoy this new article that was recently published about Daniel. There my boy goes again making lemonade out of his shit situation.
http://www.childrenscolorado.org/wellness-safety/parent-resources/shine-newsletter/january-february-2015/lights-cameras-daniel Daniel has had several good days with nothing very interesting to report. This is very good news. He even had a visit with his grandparents. Wait! Both Grandparents. My parents were in town for the weekend and then yesterday after a very, very long time not seeing Daniel, Rob’s parents came over to visit. We sat outside in the beautiful weather on the back deck and spent a short time just chatting. Daniel has been acting kind of strange around the idea of them visiting for a long time because he is so very afraid of getting sick. Rob's mom wants to get her hands on Daniel and hug him so bad it hurts but we keep enforcing the no contact rule. He is so serious about germs it is all consuming. It has so greatly affected the way we approach all situations. It makes everything unusually unnatural. It makes something as natural as visiting with the people we used to see almost daily impossible for so long that it is now uneasy. Funny how this didn’t happen with his cousins when they came over last night for a short visit. Rikki is back from college for the week and hasn’t seen Daniel since before she left. Maybe before Daniel was sick but these four have spent more time than I can count together growing up. We have been to the other side of the world with them and miss spending time with them greatly. Daniel and Caleb don’t miss a beat texting and playing online games together daily but haven’t seen eachother. Time melted away when these four got together again. I sat back and watched them with tears in my eyes and marveled at how they are all growing up. Grateful that they will all get the chance too. Again, it is another one of those sacrifices we have made for the greater good of health. We have let very little slide and almost no exceptions to rules have been made and for this I believe we have done so well. I am proud of us for this. Once again Daniel’s CMV counts are down. This past week they dropped to 4,217 which is about halfish of what they were. This means a couple more weeks to Q not Q or Qualitative not Quantitative. This means that levels are there to count in a blood test (under 1000) but not really enough to count or quantify. At this point Daniel will go to a maintenance level of meds for his virus and I will only have to administer his antiviral IV once a day (WOOT WOOT) plus hopefully we can stop his weekly antiviral in fusions. As soon as we can get this virus down and these antivirals off his queue then we hope his bone marrow will have a chance to start getting stronger on it’s own and can start rebuilding his immune system and we can get this show on the road. Today, Daniel started seeing his arch nemesis once again. Kristin the Physical Therapist. Daniel will meet with Kristin twice a week to begin reconditioning. As great as Daniel looks it is astounding how out of shape he is. And when I mean out of shape I mean more than just hi s normal laziness. He isn’t just lazy. He has no muscle mass or strength, and no endurance. The mask that he has to wear for the entire year makes it terrible for him to go our=tside in the fresh air. He hates it and I don’t blame him. But the truth is he needs someone else to get him to exercise. He is barely able to complete walking around the block without breathing heavily and he is super slow on the elliptical in the house. He is not doing his stretches at home so therefore he needs to go back to the hospital for therapy and today proves that he is starting from ground zero and that it is hard. He has a long way to go to reconditioning but he needs to start somewhere and today was the day. He can’t go to a regular gym or a regular therapy office yet because that is too public yet, so as of now he is going to have to be back to Kristin. It is not like it used to be and he doesn’t call her the Devil’s Spawn anymore…at least to her face or that I know of. I hope that by month’s end we are in a routine and he is liking the feeling of getting stronger. What a hectic past few days of emotion. We got the final test result from Daniel's last Bone Marrow biopsy that we have been waiting for. Daniel is 100% leukemia free and on even the highest levels of detection showing no signs of disease. This is after his 100DAYS and his Transplant doctor feels there is no reason to believe he will loose his graft from this point or that it would be very unlikely. His CMV virus is significant;y decreasing this past week and it was time to take him off of his antibiotic from his hip infection that he has been on since last June. These are all big things in the right direction. Another big thing was we had our first big visitors this weekend (pictures to follow). My parents came for a visit. They have not been here since October, before Daniel's transplant. Because of Daniel's virus and the crazy cold and flu season this year, we have had an extended sort of isolation period so have not really been seeing anyone, including any of our family or friends. It was so nice to see my parents and as a treat they babysat like the old days and Rob and I went out on a double date with our dearest friends Andrew and Christine. Daniel kind of gave us the cold shoulder about it. I don't know if it was about leaving him with babysitter's was the problem, or he felt abandoned, but yo know at this point in the game I didn't care. I really, REALLY feel like Rob and I deserved a night out and I miss going out with Andrew and Christine so much. It was so nice to get out and feel sort of normal and then I realized what heightened alert I was on. I was so concerned about Daniel eating and getting his medication on time. I was distracted and overwhelmed by the amount of germs I was being exposed to and upset by our conversation and then I realized that this was what integrating back into life was going to be. I had a great night and know that we need to start doing it more often because that is what we have to do. Get back to normal life.
I hope spring is here to stay and with it comes a stronger immune system with all of Daniel's friends getting healthier so that they can start coming around. I miss the full house and want the chaos of kids again around so that he can get a sense of normalcy back in his days. This isolation thing is really hard on him and I can tell by just how much he has been looking forward seeing his friends again. He is so bored at home and spends so much time in his room on his phone or laptop. I know he texts with his friends constantly and is busy doing something online but he is so not social or productive. Yet he can't get out and be active. Oh and we still have until next November. Argh, it is going to be a long year. I keep saying we are making so many sacrifices and they are worth it for having him get healthy but it is all so hard mentally. Come on kids get healthy so you can come over. I am not a teenager and I know how much I miss my friends and going out, I can't imagine how bad it is for him. Preliminary results of the latest bone marrow biopsy show that once again Daniel has NO EVIDENCE OF MALIGNANCY. This means there was no detection of leukemia cells in his bone marrow. Also his CMV continues to drop and last night it is at a level of 7,309. Remember we are trying to get under 1,000 so all and all we are looking good. We have switched up meds once again and although the antiviral seems to be working on his CMV slowly but surely, it is also kicking his ANC's butt and Daniel is in need of a more frequent boost now. Doctors say this is expected and Daniel is kind of feeling the effects of it all catching up right now. This as well as some major physical activity at a mock combine on Monday at the Seacrest studio and today he is feeling the hurt. Daniel hasn't been physically active in a long while and this probably put him over the edge. He and I both are aching as I slipped and fell on some ice while BBQing Monday night. We are like a bunch of old Grannies sharing the heating pad and nursing our aching bones and certainly the cold weather isn't helping. But at least we are at home in our own home cuddled up for comfort.
Daniel isn't feeling so great today and we had to ask his teacher to leave after 30 minutes. He was nauseous and not feeling great and went back to bed. I am watching him like a hawk. Maybe a little more than I normally do on any other given day and I have one hand on the phone to our special BMT nurse that can have him come back to the hoospital at anytime. I guess that is maybe why I am never 100% settled and comfortable anymore. I guess I just always am thinking we may need to go back at anytime. I of course never want that, but in the back of my mind have an unsettling feeling that we are never home to stay. It is a terrible uneasy feeling I wish I could get rid of. It is terrible to feel both stuck in your home but also at the same time that you can be ripped from it unexpectedly at anytime. Geez when you say it like that it sounds like such an unsettling nightmare. Hmmm, I guess that is what this still all is. It isn't over yet, I know most of the hard stuff is and we need to move on from it but there are ruts we keep tripping over. I hope a little afternoon nap will help him feel better and an easy afternoon will move us to a better day tomorrow. All good results say no reason it shouldn't. Now if the weather would just cooperate, maybe we could get outside for some sunshine. |
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