This is a picture of Daniel doing a running test at his last day of physical therapy. He has been going twice a week for months. Knowing how hard physical activity still is for him as he works on reconditioning and that it is estimated that he is probably still only at about 30-40% of his origional physical fitness level, I think he is doing great. It is hard to watch him struggle so much to just balance or support his own weight (wait, what is my excuse not able to do these things), but when I think of how far he has come in his relationship with Kristin his physical therapist that is really the biggest stride he may have made. For those of you that have followed all these months you may remember that Daniel hasn't always lets say 'liked' Kristen. In fact, he used to call her the Devil's spawn and worse. I know this was only because how hard PT has always been, but it just goes to show that the harder you work the sweeter the reward and I know Kristin feels very rewarded from the relationship they built together. I know Daniel has even grown to like Kristin, even though he still may not enjoy PT time (because it is so difficult) I know it is not because of Kristin. That girl has one thick skin and her persistance paid off in spades. Thank you Kristin.
I can’t say I am happy or upset, I am just at least resolved with the fact that we have somewhat of a plan. Somewhat. Today while we waited for Daniel’s last physical therapy appointment to start (we wait in the special BMT isolation waiting room) our BMT nurse came in to tell us the magic CMV number we were waiting for to determine if Daniel was going to be readmitted tomorrow to the hospital or if he would get to wait until Monday. She unlocked the door (believe it or not, we are locked in and only certain people with keys can unlock the isolation room to enter) came in and gave Daniel a suspicious look. She then said with a sideways look “Daniel, who did you pay off to throw the results?” Of course I was confused. She explained that the test which is only done twice a week was unreadable. Something went wrong and hey will have to wait until the next read date to be able to try again….hmmm, very curious, how that happened to Daniel’s advantage. No, actually I am so okay with this turn of events. Now I at least know that things will be how they are through the weekend while I go to Toronto and Daniel will have a good time here at home with Rob without me. G-d knows he will have enough of me once we are back together again 24/7 in the hospital starting Monday. Just in case today I spent time packing for the hospital so we are ready to go Monday morning. And I don’t need to worry about this over the weekend either. I got a little time today to go get a mani/pedi which I haven’t done in a very long time and am almost ready to go and have my weekend away. A nice treat was coming home and making lunch for the two boys together (Matthew didn’t have school today). My girlfriend asked if I was going to be able to enjoy myself this weekend and I said that I was determined to. I said if not for me then for my sister. My sister deserves to have her family come together with friends and to have a beautiful celebration of life. I will hope to not be overwhelmed with anyone focusing any attention on me or Daniel and focusing all energy on my niece. I can’t say I will worry about Daniel, I know he knows how to take care of himself and his own needs. He doesn’t but he can, and he will because he will have to and Rob will make sure he does. Everything is laid out and a schedule if made. I just need to remember to make a couple (dozen) reminder calls to keep him on track. As far as his eating restrictions and social allowances, he knows his limitations and the consequences he can cause to himself. He is very good about what he can and can’t do and will surely keep Rob educated on them. He knows what he can and can’t do. What he can and can’t eat and where he can and can’t go, how far he pushes will be interesting to see. My guess is he will sit and play his video games all week. Finish watching Game of Thrones and the eating thing is my only question. When I get home we will play some catch up and deal with what needs cleaning up, but we will be moving right back into the hospital and we will go from there.
This is a picture of Daniel doing a running test at his last day of physical therapy. He has been going twice a week for months. Knowing how hard physical activity still is for him as he works on reconditioning and that it is estimated that he is probably still only at about 30-40% of his origional physical fitness level, I think he is doing great. It is hard to watch him struggle so much to just balance or support his own weight (wait, what is my excuse not able to do these things), but when I think of how far he has come in his relationship with Kristin his physical therapist that is really the biggest stride he may have made. For those of you that have followed all these months you may remember that Daniel hasn't always lets say 'liked' Kristen. In fact, he used to call her the Devil's spawn and worse. I know this was only because how hard PT has always been, but it just goes to show that the harder you work the sweeter the reward and I know Kristin feels very rewarded from the relationship they built together. I know Daniel has even grown to like Kristin, even though he still may not enjoy PT time (because it is so difficult) I know it is not because of Kristin. That girl has one thick skin and her persistance paid off in spades. Thank you Kristin.
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Too tired to write tonight, but we are sure now that Daniel will need to be readmitted to Children's Hospital to once and for all deal with this cmv virus. He has a resistant strain of the virus and is no longer reacting to his current treatment. Depending on his numbers tomorrow, we will see when he will be readmitted before or after I return from Toronto. Tomorrow will be a massive day of juggling, readying nail biting and uncertainty.
Taking a few minutes today to reflect how much has changed in a year. So much has changed. I would have to say mostly it is my perspective. I am still a type A personality but frankly most things don’t matter to me any more. Not to say I don’t care. I care a great deal. I think a care more about things now than I ever did. I care so much that there are days I am incapacitated and can’t get moving because I am so overcome with caring about others that I am consumed by it. I care so much about how others are doing it immobilizes me some days and I know that Daniel’s continuous care is the keeps me going. I wonder what will become of me when Daniel doesn’t need me full time. I wonder how I will use my energy for a beneficial purpose. As much as he doesn’t think he needs me now, he still does. I always told myself after we saw the premature babies in the NICU with Matthew when he was born a few weeks early that when I had time I would go back and hold those babies that no one had time for…well I never did get around to finding that time and now look, once again I don’t have time for anyone else’s babies but mine. My head now swirls with thoughts of other people’s babies and siblings and friends with cancer that need help all while I am still trying to help my own. Once again we have just gotten news of someone close to us that has been struck with news of this terrible disease at a young age and I am spending countless hours sleepless worrying about them. I go to sleep with them on my mind and wake up during the night and in the morning in tears over them. If it is not enough to worry about my own child and the insurmountable problems we are still struggling with, now I am consumed by another families worries. But I know that I cannot intrude on their families time and crisis and need to let them find their way just like we did. It is making me think about how I treated all of our family and friends when Daniel was first diagnosed. Most of it just a blur now, I know that everyone wanted to help and be there for us and know what was happening but all we could do was to try to keep our head above water and survive the first days of information overload alone. Unfortunately those days and weeks turned into months and months and here we are coming up on a year and still feeling like we have cut off our entire line of communication to the outside world. But this has become our safe place. Our bubble if you will. We are still somewhat in isolation to keep us safe from the germs that are so dangerous to Daniel’s compromised immune system, but it has made our entire existence with our family and community so fragile. I hope I didn’t burn any bridges when I cut people off. I know that those who couldn’t understand and weather our storm may not have been strong enough to stick it out with us but I understand. I know how hard it must be to sit by and not be able to help and do nothing, but just understanding that this is how we needed to deal with things was is all that matters. I hope everyone understands that no one can understand a situation such as this until you are in one like it and that I would wish it for no one. But alas, we are in it and continue to try and deal with it. I am trying to start finding my back to a more regular schedule, although it is not going well. I find myself in a daily schedule of caregiver an dnothing more yet. Day by day we will get there and I promise myself that once I am there I will give myself to others. There are so many out there. Other families and children and babies that need holding even. I have learned so much this year and I am so ready to give it to others who need it. I have learned that I know how to help the others who need it I am not sure how I will do this exactly but know that this time I will find the time because I know how meaningful it is and how needed the help is for others. This is something I look forward to being able to do someday.
Today we spent all day at the hospital. Once every three weeks Daniel has to have an all day infusion that is an anti pneumonia drug. It is a precautionary measure and since Daniel has had pneumonia already it is important that he keep up on it. The time isn’t a big deal. He didn’t mind. Typically we would have done it yesterday but this particular drug makes him feel terrible and he didn’t want to feel bad for his Monday radio show (priorities people). The perk to doing the all day infusion today was that we cancelled school for him. He will make it up on Friday though. That being said after a full day of sitting around the clinic feeling lousier by the minute, he had to end the day with an hour of physical therapy. Kristen does not let up and works him hard, regardless of how he feels. She knows it is best for him and honesty it is that much harder on him because he isn’t really doing too much on his own at home lately. He has been slacking and it is really showing. Kristin (P.T.) explained that for every single day he does nothing is like 3 days going backwards. This is so evident as far as his physical conditioning. There is only so much nagging I can do, and believe me Daniel reminds me I am doing a fabulous job of it but to no avail. It is so hard for him. Both to do the exercise and to fit it in during his video gaming and now obsessive Game of Thrones binge watching. But good news came at his appointment alast weeknd as usual he checked out well. Sounds and looks good from top to bottom, and by this I mean that every single time we go to clinic several times a week they do a physical check from temperature and bloodpressure, weight (still too low) height (going up) to a scalp to soles of feet look. So thorough and not a thing ever missed EVER. We always have questions and nothing is ever considered silly or a waste of time. So today was exciting to learn that the biggest drug of all Cyclosporin, Daniel’s antirejection medication was stopped a few days ahead of schedule today. This is a big milestone. This means that in a couple weeks onc it has worked it’s way out of his system it will totally unleash his new cells to be on their own in his body and live on their own. This is the biggest step to the final step in the transplant process but for us we are hung up because instead of moving through the process Daniel is on a long term cliff hanging over the edge. This fricken CMV (virus) is holding the progress up, and just when we thought we were past the hurdle last week it has escalated again. Did I say Fuck this virus. I really mean it this time. I am frustrated and tired and sick of the whole thing right about now. I just so want to be done with this whole medication thing. But no such luck for now. Not yet. We must keep at it. So as of right now we stay the course AGAIN and stay with twoce a day anti viral IV as we have been bt since we are now off the antirejection pills we need to increase his amount of Filgrastim (GCSF) which is the booster for his bone marrow because the viral meds are knocking it out. It is all such a vicious cycle. It is all so crazy that he is really feeling okay through all of this. His only complaints are school and being woken up in the morning. Hmmm sounds like a pretty typical 15 year old. H eis talking lately about one more week until he gets his permit and is really excited so we will just keep talking about that instead of talking about what his numbers will do in the next week. Maybe the driving will be the scarier thing???? Well these past several days have been fairly normal. Shhh! I don’t want to jinx anything, right? Actually Thursday, Friday, Saturday and Sunday I got some time for ME. Little, old, me. And one of those words stands out more than others lately. Thursday, I was asked to take an extra ticket to go see the musical Motown with a group of 14 girlfriends. We carpooled and all sat together, kibbitzzed and sand and danced the night away. It was a great night of music and wonderful performances. Friday afternoon amazing friends Chandra and Janet picked me up for a nice (but too quick) lunch of catching up on kids and husbands and daily family life. It has been way too long and it was so lovely to see them always. Saturday night, I joined Rob and our work family and went up to the mountain (Casino) to a nice Steakhouse reastraunt to dine and celebrate Hannah’s year anniversary working with us at the store and just have us getting out for dinner for the first time. It was a good dinner, considering that is the restaurant I unfortunately found out about my terrible shellfish allergy the hard way (insert frowny face here), and getting to know Hannah, and her sister a little bit was great. I haven’t been into work this entire year. Hannah was truly a Godsend for us when I had my surgery last April (coming up a year this week) and then the rest of our year fell upon us. It was nice to catch up with everyone and see that it is okay to get out again for a little bit. Sunday I am lounging around writing this, and will do a bunch of nothing as Rob and Matthew take in a final day of skiing and Daniel is at Driver’s Ed class and Ronit and Amy assumed carpooling with the girls. I am free for the day. But a common theme ran through all time I found myself at most times preoccupied thinking about germs. Especially when out at the Theater and OMG in the casino after eating. I tried to stand still in one spot and no touch anything. I sat down at one point, but mostly just stood still, holding my breath. I mean that is normally what I do when Rob gambles, but still. I watched Rob playing and every time he would reach to touch his face for some reason I would make him put Purell on his hands. I know I have become a crazy person but, again I have done such a good job of staying germ free so far. But then again, I haven’t been out of the house. Now I go to a busy theater and a Casino of all places all in a few day period. That is really gambling. But these few outings were also a little experiment you could say. A test for both Daniel and myself. I am planning to leave for Toronto at the end of next week for (just) a couple days with Matthew for my nieces Bat Mitzvah. Rob will be home with Daniel and I know Daniel is fine administering all his own medications, pills, injections, this and that….not so much eating and defintly not cleaning, but only with many, many texts and phone calls. So these times away from home were a good test of how this would go. Well lets just say it was a good experiment but it did not go very well. Yes my trip away will be fine and it will all go well but this test was a bust. I described it on Friday like that time you come home to the kids and expect that the babysitter has the house clean and the kids asleep and you can come home and just enjoy the rest of your night together…yea right, we all know how that story goes. So I have two weeks and a little work to do to get us both ready for Toronto. Besides, I hope he will A. G-d willing b home and not in the hospital with CMV back and B. off of more IV meds and down to possibly just one a day. I will keep my fingers crossed. Maybe I will have to spend these next few weeks practicing getting out a bit more and encouraging a little more independence??? After many, many, MANY weeks, months in fact of Daniel having CMV (cytomegalovirus), today he is FINALLY QNQ. QNQ means qualitative not quantitative or basically under 1000 and not enough to count. He started out back in January around 300,000. Doctors say it can take a long time to knock out but this has been ridiculous. I have repeatedly written about his treatment plan so instead of rehashing it I am going to just bask in the joy that we are not going to have to be readmitted tomorrow to the hospital. Let me tell you, I need to take a few minutes to breathe. I have sent the past few days organizing and not planning to check in, but not really planning because we didn’t know. Making sure laundrey was done, house was clean, errands were complete, JUST IN CASE. But as I watched Daniel I realized something has been dfferent the past few days. I actually see a small difference in his overall presence. I woke up this morning and had a gut feeling. It is gone. I just know it. It is gone. But the blood was drawn yesterday morning and there is nothing that can be done to change the results that won’t be in until 4 pm today. So we spend a day of waiting and waiting and waiting. Geez, you would think I would be used to waiting by now, but not even close. Not a chance. I had time this morning to pack things and get ready for the hospital but did not want to jinx anything. I promise you I had such a strong feeling his viral count was going to be good. But as the day went on I started to doubt myself and terrible thoughts came creeping in. I slowly started making piles around the house and making paking lists. I even started to rearrange some appointments in preparation for the weeks ahead being back in the hospital. By 2:30 or so, knowing that by know results were probably on their way from the land of wherever these tests are run, I was feeling absolutely nauseous. I was sitting on my bed paralyzed by the fact of having to go back. Regardless of knowing this could be best for him. My feelings of certainty were now a million miles away and I can’t imagine being ready to check back in tomorrow. My head is starting to pound with the thought of being up all night packing and getting everything in order and closing up shop for who knows how long. We now need to get ready to go to the hospital for 4PM physical therapy and get his results. We check in as usual at the clinic and they typically call the our BMT nurse that brings me the 4PM test results but this time we are waiting in the BMT isolation waiting room (which is separate from the general oncology clinic) and I see the nurse and Dr. Craddock (our primary Doc- he is not normally in clinic today) heading towards the isolation room. I froze. I don’t know what I looked like but I don’t really know what he said right away. I just saw them walking towards us in slow motion. Why would Doc Craddock be coming out. This was not a good sign. He was actually so excited nd amazed that he had to tell us in person. Almost 6 hours later and I am not sure I have settled down. He reinforced that although we should not get crazy and we are going to stick with our plan as is for another week because this could still rear its ugly head like it keeps doing and we could be back in the same boat next week, as of right now, we can stay home for the rest of the week. So unfortunately we go through another week now hoping that instead of getting the CMV count down that it just stays down. We need to stay QNQ for 2 weeks ( I think it was) until we can stop treatment. By then Daniel will just be finishing his Cyclosporin (antirejection) course and in the weeks to follow the magic will begin to happen. All cells will finally have a chance to grow and flourish on their own. A place we should have been at a while ago, but I am not going there tonight, because tonight I am home, right where we should be. Yes, I still have the labor intensive schedule of multiple IV meds a day but hopefully this will be only for a while longer as well. I will take this any day over the alternative treatment of the hospital. I know what ever it has to be is what it has to be, but I will take this option for this week thank you. I have a feeling I will be able to pretty much cut and paste this blog next week, since this is the same feeling I have had every Monday and Tuesday for so long now, but today…today especially with my sister’s greatest news (see morning blog) today was the best day in a very long time.
This was an amazing morning to wake up to. An amazing morning indeed. It has been a long time coming for sure. My sister woke me up with a text (as she does EVERY morning), but this morning was different. Because this morning she was going to her oncologist for some looming test results on an MRI that was worrying her for some time and then she was headed over for her final Herceptin treatment. This is a really big deal. She has been receiving this infusion every other week for many months even since her double mastectomy, her chemotherapy and her radiation. As if that weren’t enough, let’s throw just a little more toxic waste at you…just to be sure. Final Herceptin treatment means treatment completion. Or would it be. Could it be that her treatment comes to it's completion to get bad news that she in fact isn't done at all. Not today Cancer. Today they gave her the news that THEY ARE SURE. My sister is NED. That means No Evidence of Disease. She is considered CANCER FREE. I hope this gives her something to help relieve some stress in her life and allow her some room to breathe a small sigh of relief, even for just a moment. If survivors can ever do this. She deserves to do this. I told her this morning that if G-d can hear my word’s, TODAY she should be done with all this forever and that it is time to move on. Time to move forward. Here she is with my brother in law Mike by her side, from beginning to completion. They will celebrate with cake and champagne tonight.
Tomorrow is a crazy exciting day. Tomorrow Daniel goes back to a classroom. Albeit a driver’s ed classroom I feel like I am sending him to his first day of kindergarten. I have packed him his lunch and all his medical stuff and gone through it with him a hundred times and he has rolled his eyes a hundred and two. I am terrified to send him. It is way across town and I plan to stay close by. He has been throwing up a lot lately and it is starting at such an early time it is way off of his schedule. I am terrified and we are sending him against doctor’s recommendations with his numbers being so down. We have to trust that other parents will use their better judgement and not send sick kids and that Daniel will call and leave immediately if he senses trpuble. I do trust Daniel completely he is overly cautious. A perfect example of this is yesterday afternoon we went to a movie. Purposely going during the week in the afternoon so that it would not be crowded. We went to see The Woman In Gold. When we walked in there were about twenty 80ish year old people in the theater, a few (maybe one or two) seemed to be coughing and clearing their throats. Daniel looked at me and said “I want to leave. I am not staying in here with all these people, there are way too many sick people and germs.” I respect him advocating for himself. He has done such a good job so far taking care of himself. I feel every little thing we do is taking risks and relaxing is not an option. We did find another movie to hop into that only had two other people in. And after we bleached down the seats and sat away from them we enjoyed the show, but getting out does not com without it’s worries. So you can imagine what a nervous wreck I will be from 8-4:30 tomorrow. I will try to sleep tonight between the worry and the excitement for Daniel. Knowing that the risk is worth the reward getting him one step closer to a driver’s license and a normal adulthood. Driving. AAAAAAAAHHHHH!!!! More worries . Breathe mamma.
I am up and running again. I was having a computer issue for a few days. In those days we were holding our breath that Daniel would have to be going back to the hospital once again, but luckily we have this week at home for now. His CMV numbers came back a tiny bit lower last night and have decided to stay the course and keep treating him as we have been for another week. Meanwhile we are sending his virus of to another lab for another resistance test to see if he is possibly building up a tolerance for the drug he is taking. Until next week an we see his numbers again that is all we have. Unfortunately the only other drug option would require him going back into the hospital so that he could be closely monitored. The reason the doctors are so hesitant to begin the other drug treatment is that it is detrimental to his Kidney health and they are not ready to pull that trigger quite yet. It is now getting into a tricky area of long term organ compromise with the one drug treatment he has been on for so long, or acute damage resulting in need for dialysis with this new drug. It is a very sharp double edged sword and although I am impatient with a decision, I am grateful the Doctors do not make these decisions lightly. Tuesday night and the resistance test won’t be back until at least late next week anyway, meanwhile Daniel continues to feel alright. His tapering of his antisuppressent is almost done and although his nausea and vomiting has increased and is more than a bit of an annoyance, overall he is feeling pretty good. This is why once and for all we would just like to get over this hump and move along on this road.
He is back to studies and off spring break so that has been helping to fill some time aside from his video game schedule and he is looking forward to starting in class driver’s ed in a small classroom this coming weekend. Although it will be cumbersome with the mask and keeping away from others, I am sure he will be glad to be doing something that is close to teenage normal…although I guess sitting on the sofa all day playing video games is pretty teenage normal. Hmmm. Passover was wonderful. While I was sore and exhausted making a seder for just the four of us, I can't complain for a second (okay maybe a second ). First of all it was great for the four of us to all just to be together and for so long 3 and a half hours and no arguing (okay maybe a little). It was very obvious that Daniel has desperately missed all aspects of Judiasm. He did nkt miss a beat. Yes we had fun, but and laughed and joked and sang but when we tried (okay when I tried) to skip a part or even a sentence Daniel literally freaked out yelling "we're Jews, we aren't skipping any of this, it's once a year." Your wish is our command (as usual) and we did not skip a word. In fact we read every notation, caveat, side bar and stage direction in the Haggadah but he did say in all fairness that it was the abridged version. oy yoy yoy. I know he has always loved his Judaics, this just showed how much he has missed it. It was a great evening and worth falling into bed exhausted.
Unfortunately the next morning Daniel woke up not feeling well. Just run down and overall crappy, headache and nauseous and lethargic, but what scared me most was him complaining that his hip hurts. Hurt enough to need pain medication and that means bad. he had a nap and toughed it out because I knew he had been looking so forward to going to Aunty Debbie and Uncle Kevin's for 2nd seder. Although not quite up to par, he was so glad to go. I personally was so happy to spend a holiday with family and just have a meal with some other company. Good food (well okay food, it is Passover after all) cooked by someone other than me, and great company was fabulous. Daniel misses his Judaics, I miss friends and family. Before bed Daniel of course told me he was glad to have gone but that if he still hurt that bad in the morning he wanted to go to the doctor. Needless to say, I didn't sleep well. Lo and behold, morning found Daniel feeling a bit better and me very tired, but at least he felt better. Day 2 of frying matzah and him not eating it because he got sick again so I ate it. But by noon he was ready to start the day. Not feeling well enough to join Rob and Matthew for a day out at a movie so the two of us just hung out at home all day. Tomorrow we go early yo the hospital for a regular weekly infusion and will hope for decreased CMV readings. I have a strong feeling that he is feeling so poorly because the virus is increasing instead. we wont know really until Tuesday night when his results come back but at least we will be able to check into his hip pain. Argh, another moment of frustration. On the bright side....aw crap, I don't have a bright side tonight. Falling into bed as soon as I finish final dose of meds. Off to hospital in the morning and there is no morning bagel to start with (Passover). We will be back and forth twice to the hospital since Daniel has his radio show in the afternoon. Hey there is the bright spot. See, there is always something to look forward to. |
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July 2016
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