So as I spend tomorrow repacking and getting ready to head back to the hospital, it is more than just packing up a box and suitcase to move us out for a couple months. It is so much more. So much is on the line, so much that can go wrong, so much to risk. But we have to do what we have to do to bring our baby home again. We will come home safe and healthy and whole again. New lease on life, new blood and new start. We will be home again, and will get that chance.
Well we did it. We made it through a grueling two weeks of BMT work up. We have had every organ, emotion and orifice assessed and everything has checked out. Daniel is in remarkably good health and all baselines are collected and complete. The best news came earlier this week when we got the results of Daniel’s latest bone marrow biopsy. For the first time since being diagnosed in June Daniel is technically Leukemia free. He no Leukemic cells in his bone marrow and has no genetic mutation any longer. I know it sounds very confusing. You ask then why does he need to have a whole bone marrow transplant? That’s okay everyone asks that. Even Rob on a daily basis. It is because of how he responded (or didn’t respond) to his first round of induction and the type of resistant rare Leukemia he has. The bottom line is the bone marrow transplant is the best chance of a CURE to his Leukemia period. Believe me, not that we want any of this to be happening but if we can walk away at this point we would. But we can’t. But we are walking in on Sunday with the cards stacked in our favor. Daniel is healthy, his numbers are strong, timing is good, his donor is an excellent match. The time is right and we are doing this NOW. And I am scared as shit. Along with the tests came all the consent forms and waivers and signatures. Everything that described the worst case scenarios and warnings. I know they are covering themselves and need to prepare us in the unlikely event, but nonetheless it made me feel like I was literally signing my life away. Literally. As difficult as everything started and as long as we have been at this, Daniel has been feeling good lately and now they are telling us it is not going to stay that way, they are telling us about how bad it will get and how it is rare that he will get through it without all of the bad parts (I will spare you). I kept turning to reassure Daniel that these things may not happen, and we will may not have to deal with most of those hard things because we haven’t seen any of it so far, and the doctor kept redirecting us giving us a timeline about WHEN these things will surface in our timeline (or roadmap as they call it). I understand that there will inevitably be side effects to deal with and that is a price to pay for the bigger prize of a cure, I am just terrified of it all. I think I am anticipating it now, when before I didn’t know what to expect. Man, am I to knowledgeable? Regardless, we are doing this and I will do everything humanly possible to keep Daniel’s spirits up and keep him as healthy as long as possible. I know I can’t do anything medically, but I can advocate for him, and keep things in this strange environment as normal as possible for him. With all the restrictions we will have imposed it won’t be easy, and this blog will be my only connection to the outside world for quite a while. This will be another challenge. We will welcome all emails and texts and calls when we can take them. Again I cannot predict how our days will go, I hope with ease and time for introspection not just days of stress and sickness. I hope you will all send us your best wishes, thoughts, prayers or whatever you can. We would love you to drop us a card or a fun picture to brighten Daniel’s day and liven up his room. We will be at the hospital in isolation for a minimum of 6-8 weeks starting on Sunday morning. Please G-d not much longer. I am not anticipating any set time frame at this point. Sending anything to our house will get to us through Rob most nights (446 South Olive Way, Denver, CO, 80224) or in care of Daniel Hailpern at the Hospital (The Children’s Hospital, 7th Floor East , 13123 E. 16th Ave, Aurora CO, 80045). I know Daniel loves looking at your words and cards that are made or sent (as do I).
So as I spend tomorrow repacking and getting ready to head back to the hospital, it is more than just packing up a box and suitcase to move us out for a couple months. It is so much more. So much is on the line, so much that can go wrong, so much to risk. But we have to do what we have to do to bring our baby home again. We will come home safe and healthy and whole again. New lease on life, new blood and new start. We will be home again, and will get that chance.
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What an emotionally overwhelming moment today. We went into Children’s for a morning of appointments and new we were going to have a break to have a surprise appointment for Daniel but never knew how it was going to throw me back like it did. Chris and Cody from Seacrest Studios had been planning something for Daniel for the past few weeks before his upcoming transplant but we didn’t know what. Yesterday we got a call that Beth Bowlen, Daughter of Broncos owner Pat Bowlen wanted to meet with Daniel , but never in a million years could I have expected it to have affected me or explain what an impact it made on all of us. It didn’t take 30 seconds of meeting her that we weren’t all crying. And I mean ALL. Me, of course Rob (that is not a surprise) Beth Bowlen was not afraid to show her emotions openly and I think Daniel was a bit teary as well. Chris and Cody were tearing up as well as I know how fond they have grown of Daniel with all the time they spend with him. It was obvious that Beth, representing the Bowlen family and the Bronco association was very emotional and very affected by Daniels song and explained what it has meant to her personally and to her family. She told us in detail what it felt like to watch it with different family members and friends, including her father and how each of them felt. I can’t explain how this felt to us, and how it made Daniel feel. This brought a whole new level to this experience to all of us. She described how both John Elway and Peyton Manning felt about the song personally and then when she told us about what she spoke to Mr. Roger Goodell PERSONALLY had to say about Daniel’s song and video…well I don’t think I can even put into words what the look on his face said. This whole experience has been remarkable, I truly have no words to describe what Daniel’s words have brought to others. His love of football and a fun song writing contest became this and this parody turned into joy for so many and Beth Bowlen told us after watching the video so many times and what it meant to her on so many levels she actually went and signed up to become a bone marrow donor. How about that. Go Daniel. Not only Is Beth going to put in a good word with Mr Goodell personally with you, you actually got another donor recruited. I believe Daniel connected with Beth on a special level and I believe she was truly interested in Daniel’s story. In fact, I believe she will be following Daniel quite closely now. I think she understood Daniel’s allegiance to The Packers but I have a pretty good feeling The Broncos just moved up a notch in his book. They certainly did on the personal connection level in my books. This wonderful, beautiful spoken woman, who is obviously a loving daughter and compassionate mother to say the least took the time to get some great swag together for Daniel and spend some great quality time today with my boy before he goes in for the fight of his life. What can I say? Ms. Bowlen, you’ve made your father proud giving my son the encouragement and pep talk to go the distance into a long game season ahead for him. This is just what he needed. I can’t thank you enough. What a lovely day today. After waking up an getting some house work done for me and homework done for Daniel, Daniel very kindly tried to appease his mamma and asked her to go to the Denver Botanic Gardens. I have been wanting to go to the gardens since the Dale Chihuly glass exhibit came in June, but hmmm, things have gotten in the way. The exhibit is only here until November and we really only have until Sunday to see it. We are so scheduled with appointments that I didn’t think it would happen, but then a free couple hours arose and Daniel asked me if I would like to go. What a good boy. I couldn’t have been happier to have gone with him. It was a gorgeous day and the glass sparkled in the sun. The weather was spectacular and the company couldn’t have been better. Daniel I think enjoyed it so much more than he thought he ever expected he would. I only hope Matthew will be able to go before the exhibit leaves town. What a beautiful gift the exhibit is to Denver. The day was a wonderful relaxing gift in itself of art and nature combined.
After afternoon class at home and just enough turnaround time Aunty Rochelle and Uncle Mike arrived in time for dinner out. We ensured a private room at Elway’s and had a really nice time catching up. I was so happy to see my sister looking great after a really difficult 10 months. Wow 10 months already. Remarkable how the time has gone so quickly at times and slowly at others and sure enough she has come out with the same smile on the other side. Maybe a little harder to muster but nonetheless it is still there and Daniel certainly helped her muster that smile as she and Mike watched Daniel devour volumes of food at dinner. Probably enough for several grown men. They marveled at how good and healthy Daniel looks and his long fingers and his messy eating and just how good it was to be here for a visit. It wasn’t easy for Rochelle to travel here. It may not even have been a smart choice to actually do it, but she felt she need to do it before going in for transplant. She booked her flights without me even knowing and upset or not it is what she needed to do no matter how difficult before this unknown time for us. Whether it was for her or for me or for Daniel, how could I deny her that after her year. She will probably pay with her health and energy but what it will do for us to sustain what it will take us to get through our next 10 months will probably be worth it, if I know her at all. I am glad she made the choice to come and I hope she has easy travels. I hope Daniels knows the importance of how hard it was for her to make this trip. I know I appreciate it. I just hope she knows. Not sure what to do when I am so tired I just want to cry. I know we are all there sometime, but I am so tired I think I could collapse. I feel I am going to be too tired to go back to the hospital and have enough strength if Daniel gets sick. I am terrified how much strength it is going to take. I am so busy trying to get the house organized and ready to leave and Matthew all set up and things cleaned and organized that I think if anyone analyzed me thay would think I was honestly manic. I feel like the mouse in If You Give A Mouse A Cookie every moment. Every time I turn around I start another project. I can’t say I am not finishing the first one, but I do have a lot going on. Plus I am not getting a chance to get any of MY STUFF done. Yes, I have let all my things I wanted to do fall by the wayside AGAIN. Although, I did set the goal of getting Matthew downstairs and that is accomplished and I did want to fill the fridge and cook for Daniel to eat home cooking and gain weight and that was accomplished and I froze foods so that was accomplished. I DID do one thing for me. I did FINALLY get my haircut for the first time since June, no maybe April. And because of waiting so long and the damage that ensued from the hospital I had to lose almost 10 inches of damaged hair. That is a lot of length and a lot of damage. I don’t know how I can avoid that from happening again and I may be ending up with a pixie cut in the end. I told Daniel I would shave my head in solidarity with him in the beginning and he told me DON’T YOU DARE. I just may end up there by default. The weekend ended up being very hectic even though Matthew was gone at a convention all weekend. We were given a suite at the Avalanche hockey game by the hospital late Friday afternoon which was SWEEEEET indeed. They gave it to us from Seacrest studio so we can enjoy a night out while out of the hospital without worrying about germs in a crowd. It was such a last minute score for a suite that it was hard to wrangle up a big crowd in time, but we had a small group and had a great time at a great game. The rest of the weekend was spent home and cooking and cleaning and running and cleaning and cooking and repeat. As long as Daniel is staying healthy we are good. This next week is filled with lots of appointments, sports shows, a visit from my sister Rochelle and Uncle Mike. I haven’t seen my sister since this shit year started in February with her surgery and Daniel’s first hospital stay which brought me quickly back to Denver. Has it really only been since February? It seems like 20 years ago. Rochelle and I don’t talk often but probably text no less than 300 messages a day. I am not kidding. We never could have gotten through an afternoon without each other on the other end of the screen. Whether it be for a complaint or a question or a cry or mostly a laugh. Our bond has grown tremendously and I can’t wait to see her even if it is for just a day and a half. I know we certainly can’t compare whose year has been worse but at least we have had each other there to share it. Even if it has only been through words it has meant the same to me because I know we have been there for each other no matter what. We are each the strongest people to each other.
Wow was today a full day of testing for Daniel, and for my endurance. Early morning starting with test preps is never fun for anyone, but Daniel is always a trooper. Not getting to eat for a teenage boy is hard enough but having to drink the gross test prep contrast stinks. Figuratively and literally. Poor kid. We started the morning with chest x-rays which are pretty harmless, but things quickly escalated to an uncomfortable MRI. Typically Daniel has been sedated for MRIs since it is has been so difficult for him to lie on the hard table so still for so long with the hip and bone infection pain he has had, but since he has been doing so well and pain free we thought he would try it awake. BUT he is also uncomfortable from Tuesday’s bone marrow aspirate and spinal procedure so we needed to pad him up a lot. He actually did quite well with the assistance of TLC, relaxation talk and a KungFU Panda video (no idea why he chose that one). Mid MRI the next crew came in to prep him for the next test and that included injections that made him fairly nauseous. Seriously? Then they sent him back for the remainder of the MRI to lay still, ugh poor guy. Successfully completing the MRI he moved on to prepping for the Radionuclide GFR which would be a 5 hour series of blood draws once an hour and a half completing a contrast completion. Forgive me here because I may be confusing this with the other contrast that they were also now starting him via IV which he still hates and really hasn’t gotten any better at. He got a bit upset that he has this beautiful Broviac chest tube nicely inserted for all input and output services and now they are telling him he needs sticking again. He is not happy, while he is drinking really gross tasting crap. I tell him I would gladly drink the medicine if I could but he said it wouldn’t do anyone any good and then he would have to deal with me being sick too. He now has some Benadryl in him because he had to take something that has iodine in it he may possibly react to so we are premedicating . Off to CT scan for chest/sinus/abdomen and pelvis. As we get into the room he says he remembers being in that room and refers to a not so good experience in the machine, but says that that won’t be happening again. And it doesn’t. Aside from a bad IV stick, the CT scan goes quickly and fine, just like everything else today. It all went quickly and fine. There was just a lot of it. I am glad it was all bundled together but it was just a lot. Once we were out of The CT and more blood was drawn we were now okay to eat. Perfect timing because Rob was on his way with some lunch. Just between appointments. So nice of them to schedule it that way since we this growing teenage boy hasn’t eaten since last night. After lunch outside on a beautiful fall day under the red trees we were up to Pulmonary on the 3rd floor for baseline readings of Daniel’s lung functioning. The lungs are common place for infection with graft versus host disease after transplant and they need to have a read of what is normal for Daniel. The very pretty technician had Daniel breathing heavy in no time but it was really hard for him to muster up the breath support but he had no problems getting a very normal reading. Boy I am I glad he ate lunch just before or that boy would have been passed out cold on the floor for sure. He is definitely low on the energy scale these days and it was not an easy task for him but he did it. We will hope to stave off all infections and not need any treatment in this area through the transplant process. Fingers crossed. Back down to the lab for another blood draw and then one more at 4:45 and then stick a fork in us. We are done for the day. WHEW another long one. Tomorrow is fairly easy I think we have only one appointment eye exam and of course on air live at 2pm in the Seacrest Studios. But tonight is Thursday night football so that means night off for me. Plus the Gottlieb Family graciously is hosting a meal for us tonight so thank goodness I am going to be able to relax, thank you for that Gottliebs. This girl is tired from testing all day and I didn’t even do anything so I can’t even imagine how Daniel feels. Can you believe he asked Rob on the way home from the hospital if they could try to get town to the football stadium to see if they could get close for the pregame sports center show. Seriously? I am a walking zombie. I asked him Why? What for? Aren’t you exhausted? He said he could use it for his show tomorrow. This kid is unbelievable, I tale back my feeling sorry for him drinking that stinky contrast.
This week is information overload already. Daniel is already showing to be a champ and his patience kind of freaks me out. He and I were all day in appointments at the clinic for the past two days, being introduced to the new side of things. The Bone Marrow Transplant World. Even though the surroundings pretty much look the same and the staff is fairly familiar because we have been long term patients already there really are some big difference. Some may seem subtle, however others are rather staggering. We will now have our own very sterile BMT room in the clinic that is our very own in and out. No shared germs for us now. Closed doors. Special rooms. Special masks. Special water, special food. I already don’t like feeling so special. Daniel and I agree we absolutely love Dr. Craddock. He will lead our new journey into this transplant world. It is all very strange and complicated but he is so thorough and has such a great way of explaining things. Daniel really feels comfortable with him and so do I. The Bone Marrow Transplant team is a much smaller group of doctors than Oncology and we will know them so much better. They don’t switch as much on a weekly basis and on weekends and have all the residents and fellows as we have seen so far. Dare I say it will be more homey. Ugh. We have learned more rules and restrictions in the past two Days than I would like to know but yet it all seems to roll of Daniels back. Today we also became part of a nationwide research study that may help the way they study Leukemia in the future. It won’t really change anything for Daniel or his treatment but they have selected 150 cases going into transplant and Daniel has been selected as #150. See SPECIAL. The study basically will track his bone marrow over his next three biopsies for trace cells of residual cancer cells and how they are read with special lasers at such a high level of accuracy that it will be able to reevaluate the efficacy of treatment for future transplant purposes. Daniel thought that was pretty neat. We left todays preliminary checkup with Dr Craddock with very few questions since he explains things so well and so thoroughly.
Meanwhile, as all this was going on it is Matthew’s 16th birthday today and he also luckily had the day off school so Rob went with him and he was getting his driver’s license and I could hardly contain myself for his excitement. Even though all my energy and attention is focused on Daniel, inside I was bursting with happiness for Matthew. Matthew has wanted to drive since he could walk basically so this is a momentous day for him. After our checkup with Dr. Craddock Daniel had another Bone Marrow biopsy procedure and Lumbar Puncture with InterCranial Chemotherapy. Sounds scary and although it is, this time I think Matthew getting his driver’ license was WAAAAY scarier. After all this is Daniel’s 3rd or is it 4th on of these. He does great with them. In fact after the anesthesiologist came in and finished the mandatory football discussion and they finally took him to the procedure room they actually…wait for it…..let Daniel put himself to sleep. Yep you read that correctly. If I hadn’t watched and videotaped it myself I would not have believed it. He pushed his own propofol. I am sure there are rules and regulations against this but how many of us can say we put ourselves to sleep for surgery. CRAZZZZINESS. Anyway he woke up quicker and easier than usual and actually much nicer. Most of the time it is with a potty mouth like a drunken sailor. This time it was just pretty funny and as always entertaining. He quickly asked for Matthew and Matthew was calling checking in from the car (on Bluetooth of course) asking if he could drive over donuts for Daniel. Awww, can you feel the love, and any excuse to drive around? Well we were out of the hospital fairly quickly after waking up and when we got home big brother took little brother for birthday icecream together ALONE. Now that is a strange feeling. Daniel came home pretty excited saying Matthew did a great job and is a way better driver than me and he had a lot of fun. It was really nice to see them together and I hope this brings them closer together while we are home for another week and a half. After we are back in the hospital, Matthew having his license should help our schedule tremendously but now sure what it will do for my stress level. I said that this just took our parenting to a whole new level. It really is as scary as people described. Tonight he ventures out on his own in the dark. I so not forsee a whole lot of sleep in the near future. It really is a whole new world on many different levels starting now. What a fast week this has been. Filled with chaos and screaming and errands and cooking and cleaning and time has flown by so fast I can’t believe it. It has all been so normal I have hardly had a chance to stop and think about what is all going on. I am kind of in a sense nesting. I was frantically getting cleaned up and settled back in the house and then realized I am in a deep clean organization mode cleaning out corners I haven’t been in in years. This weekend we actively worked on finally moving Matthew down into the basement which has been the plan for some time now but finally we got a chance to focus on him, which is only fitting, since our boy turns 16 on Tuesday. Another big day to celebrate and it should be a happy day. He deserves a happy day. He has had too much to deal with this summer. Although he has never been one to enjoy too much family time and attention, he certainly got his way this summer. But he got his fair share this weekend.
This past Thursday Daniel and I had to go to the clinic for updated blood work. Although the clinic was a zoo and running very slow and I was very inpatient wanting to not be there when I wanted to be on our own time since they said we were out of there for our time at home. I had a strange jolt back to our reality when we got lab results. But not what you would think. His numbers were all GREAT. So great. When the doctors came in, they commented on how healthy he was and how good his numbers were and how, pleased they were, blah, blah, blah. How healthy he was. How healthy he was. We are getting ready to go in for a bone marrow transplant and he is missing his freshman year of high school and my whole concept of normal life as I know it has completely turned upside down and they just told me how healthy Daniel is. Now don’t get me wrong. I agree. Put this kid in a line up (with a hat on of course and a shirt to cover up the tube coming out of his skinny chest) and he is as normal and healthy looking as the next kid. I dare any one of you to pick my kid out as the sick looking one. I just don’t get it. Maybe I am in late stage denial. Maybe I am just finally getting used to natural fresh outside air again, but I am not understanding how in two weeks my child is going to be going under a life saving procedure that has so many potential risks, but that needs to be done in order to keep this now healthy child healthy. I get it. I do. He is healthy for a kid with Leukemia. I get it fundamentally, but any of you that have a chance to spend time with Daniel these days probably will feel like me. It doesn’t make sense. That this smart ass, very active, seemingly healthy typical teenage kid has leukemia. You would understand if he looked sick, or acted sick. Believe me I don’t want that. This just doesn’t seem normal. But what is normal, right? What our plan is for the next two weeks starting Monday is Daniel and I will be at the hospital all day every day for testing. Daniel has to have every type of test you can imagine from an eye test to and EKG and everything in between. He will have to have every organ and system assessed and baselines done before he is readmitted for his bone marrow transplant. We are being readmitted to the hospital on November 2nd but until then will get to do all of these tests on an outpatient bases, which means we get to sleep at home. This is as long as he stays “healthy” which I know he will. The next two weeks will be grueling but he will do homework and the hospital was gracious enough to schedule all appointments around his sports show twice week. These things are important to him and keep him positive. His attitude remains fantastic and as we get closer to readmittance I just hope we can keep things as normal as possible. What a blessing it was that Rob and I were able to bring Ben to Denver today to spend a couple days with Daniel. If you haven’t read the story that Ben wrote about Daniel and their friendship and his own experience with Daniel then please take a minute to read this moving piece he wrote and you will know why Rob and I felt it was important to give these boys a few moments together. Rob picked up Ben and brought him back to the house and within minutes the two were catching up and sharing stories of camp and of course football. Ben is a wonderful role model for Daniel and it is noce to see them so comfortable together. I know they will enjoy each other’s for the next few days of talking football, playing Madden, going to do Daniel’s sports show and just hanging out. It is a pleasure to have Ben with us.
Well that last boost of red blood did the trick and 5 AM Sunday morning the nurse came in with Daniel's ANC at 110 and I haven't slept since. What day is it now? Geez am I exhausted but I couldn't be happier to be home. As usual it is great to be home but difficult to settle in. Not for everyone else I don't think, just me. Just my usual me, wanting to come home and get everything all settled and right after so long. First getting it all comfortable when I know it already is, especially for Daniel. He was right back to his warn out corner of the couch watching football 30 seconds into walking in the door and has had to be told more than once to get his lazy ass off the sofa to get his own glass of water. He has settled in just fine. In fact he has had zero adjustment issues this time. He and Matthew have gotten along better than ever and have fought less than ever. I have even seen them actually sitting together in Matthew's bed and on top of each other once (do I dare call this cuddling) without leading to hitting each other on the couch. Me on the other hand have finally (almost) caught up on past laundry, and the fridge is full, and have I mentioned I am exhausted. I am physically sore and hurting from standing on my feet for two days straight of house work (but not complaining really) I haven’t been out walking except to the grocery store or up and down the stairs with laundry. I have made lots of food which has been great because Daniel has eaten LOTS of food. Boy has he eaten a ton. He does not eat like this in the hospital. I mean volumes. I have frozen a bunch as well so that when we are back in the hospital we will have portions to take with us so that this time we have home cooking to take with us at least. So now that I am ahead of the chores I think I will tackle a few projects that have been waiting for me since June. Hmmm, for some reason they didn’t get done on their own while we have been gone. I have a linen closet that can barely be opened, rooms with clothes that are too small, I plan to get the basement cleaned for Matthew to move into in the next few weeks and need to find some fall/winter clothes that are in boxes downstairs. We seemed to have missed summer completely while being up in the hospital Anyway, as I was saying, I am not complaining, this is happy exhaustion, I a, glad to be home getting to to do it all.
Yesterday was growing day for Daniel's and my relationship. We had our first fight. I am actually surprised it took us so long living so close for so long. After talking to Bob (our favorite Dr. Psychologist), he in fact said he is amazed that we haven't fought yet and said most teens and mom's are at each other's throats long before now and their fights are in the thousands by this time. He thinks we are doing unusually well. We disagreed about something, then cried and stomped a round and when Daniel tried to leave to take some time and take a shower to get away from me we realized we were screwed because the 7th floor had no hot water all afternoon (due to construction). So where do you go to go cool off when you are in a 10 by 12 room for almost 6 weeks with the same person. Anyone who has ever had to share a one bedroom apartment with one bathroom and no kitchen can probably understand that we are both feeling a bit trapped at this point. Worse yet, Daniel CAN'T leave. I know there are many moments we probably both want to run away. I decided to give him some space and I left the room for a little while. I went to the family waiting room and we both had some alone time. Before long (about 8 minutes) he called me and asked me to come back...oh and can I please bring him his lunch (hmmmm). We had a nice afternoon with a great live radio show, then an afternoon rebuilding the Sukkah for Rob and Matthew to join us for dinner under our stars, after fun family game night and a later than usual shower (because of no hot water all day) Daniel and I obviously made amends and crawled into bed together to watch Animal Planet's Africa. Neither of us were going to make it to the end of the video so he thanked me for a great day and asked if I could sleep with him tonight. Are you kidding me? Are you kidding me? He fell asleep cuddled up on my bad shoulder and I stayed awake smelling his clean patchy bald head. By midnight when the C.A. came in for vitals I had had somehow fallen asleep. At 2AM when the nurse came in for his blood work I had absolutely no feeling in my arm any longer but was ready to go back to the plush hospital sofa I normally sleep on confident we had made up. By 3AM I heard the nurses in the room starting to pre-medicate Daniel for getting Packed red blood cells. I peaked under the sukkah wall that was now separating us and the told me his ANC doubled overnight and was now at 80. Woohoo I thought, half awake maybe we will be home in a few days. But when his hemoglobin drops below 8.0 he needs to get blood. This has happened many, many times in the last several months and is fairly routine. Not only that it is a good energy boost before he heads home too. They intentionally do transfusions in the middle of the night for two reasons. One: the kids get Benadryl and can sleep through it because it is very uneventful and takes over two hours and Two: because the kids have to be monitored so closely during the transfusion for very rare and unlikely reactions that the nurses like to do it when they aren't busy during the night. By monitor I mean they stand over the kids with a light and watch for skin reactions and monitor blood pressure, temp and chest sounds every 10 minutes for pretty much the whole two hours. And yes, Daniel typically sleeps through it all and mostly so do I....but NOT LAST NIGHT. The pre medicating went as usual. I.V. Benadryl since he was sleeping. Then I hear the two nurses in the sukkah confirming Daniel's writ band and patient number (typical), then they cross check the first unit of blood and verify it with each other, along with Daniel's patient number and blood type (typical) A Positive by the way (of course he is), then they hook him up and start the infusion (typical) and start to watch him. Then typical stops. Within 5 minutes of starting he suddenly fast and furiously starts this terrible constant loud gasping barking cough attach straight out of his sleep. I suggest he take a drink of water and Daniel abruptly yells back "I took a drink of fucking water, it doesn't help, I can't breath." OKAY, are we fighting again??? When the coughing doesn't let up for a second it is apparent exactly what is happening and this is the exact reason that they monitor every blood product and chemo treatment so carefully. Daniel was having a bad reaction to the blood product. Just not a typical reaction. That's our Daniel, nothing typical. They called a doctor immediately but stopped the infusion right away. We were all in the sukkah at this point although it was starting to tear away from its support so we quickly got it out of the way of chaos. When you are having a coughing breathing attach I am sure a roof and walls falling in on you doesn't exactly help much. A good dose of Benadryl was administered and then some Albuterol and it all stopped as fast as it started. My mind was racing about bone marrow donation at this time and I know there was no way I was going to be sleeping the rest of the night. In fact Daniel's antibodies obviously did not like the antibodies in the donor blood and it just had a bad reaction. I guess Daniel was just in fighting mode for the day? No idea where he gets that? Needless to say we were up literally most of the night so nurses let us sleep most of the morning away. Daniel slept until almost noon today and that is just fine. We ended up doing the first half of another transfusion late in the day and there was absolutely no excitement involved whatsoever. I guess between lack of sleep and low red blood it was no wonder he had no energy all day. Maybe today and tonight's top off will give him good boost of energy to send him home in the next few days.
As promised I said I would post pics of our make shift sukkah, Daniel is so proud. I made decorations all day while he did homework and had school and then after his teacher left and we planned it out he kicked me out of the room. He was so excited and worked so hard he even forgot that the football game had started. We decorated it together and brought in all the nurses to show them the finished product then climbed into our cozy hut and even made a somewhat proper Kiddush. We had pomegranate juice and challah and we even had our homemade lulav and etrog. I think we did a pretty darn good job pulling it together and it is the first year we didn't get leaves in our soup. We have cleared it with the nurses and Daniel has decided to sleep in the sukkah tonight (note the stars above).
So last night was the beginning of on of my favorite Jewish Holidays. It is the Sukkot, the Harvest Festival and it is when we usually invite all of our friends and family to our home (actually our temporary home built under the stars). Our family has so much fun with this holiday and I have always enjoyed the cooking and the hospitality and the craftiness and just general fun of it all. I also love taking turns to go to friends houses and share in their Sukkahs. This year I am so sad that we are unable to construct our crazy, odd and funny sukkah, with the crystal chandelier and all the kids art and the endless amount of grapes and fruit we hang from those shedding branches. But last night Rob and Matthew were asked to go to a friends home to celebrate and Rob knowing my love for the holiday and probably my need to get out of here strongly suggested , no he came and kicked me out and said go home and take a shower and take Matthew. So I did just that. I went home and took a much needed very long steam shower and escorted my very tall and handsome son to the lovely home of his former classmate. The Fogel Family have an extremely beautiful home and had the most warm and wonderful sukkah ready for a perfectly packed in night of fall food and friends. It was such a nice night filled with homemade food which I miss so much and it was so delicious. Celebrating with nice adult conversation and laughing kids and food from the garden. Lisa made soup in honor of Daniel which he requested, because he loves her soup and he was waiting up for his leftovers when I got back to the hospital. It was so nice to get out for the night and get some much needed fresh air and eat out under the stars as the holiday requires us to do. I went back home (sigh-to the hospital) with a full heart and belly and renewed energy for the next week, hoping to make it home as Daniel's numbers slowly come up. I am glad Rob made me go last night and he got to spend the night with Daniel. I think we both had good quality time. So since we are unable to do so this year, Daniel and I are going to make do in 750 and make a sukkah in the room and just welcome anyone bring us their leftovers in Tupperware to reheat. Stay tuned for pictures to come. It will keep us busy with an activity for the day. Although Daniel did request that we could be able to watch the football game tonight from inside (doable). Next year God willing we will welcome back guests to our home with a bountiful harvest of health.
So today numbers are up a bit more. Daniel is starting to make platelets on his own instead of losing them and he has more monocytes. All good signs of count recovery, but more importantly to keep our spirits up and our muscles working we try to get out of the room at least 3 to 4 times a day to walk. Where once Daniel could not move his ankle or foot to even get out of bed, he is now walking so quickly through the halls of the unit that we try to do four laps at least 3 times if not four a day. The PT who doesn't work with Daniel anymore but stops to say hello gave us a chart at the beginning of our stay this time to chart our laps and measure our steps. Today we finished our half marathon. This is a HUGE ACCOMPLISHMENT. It has also got me moving more and I have actually enjoyed every minute of it. The funniest part is when we get to the back part of the unit and there is no one there the two of us actually jog. Well Daniel jogs and I run. Well in all honesty, Daniel walks the whole way and I have to stay in perpetual mall walk mode just to keep up with his long leg stride. He out paces me two to one. I actually have learned to enjoy the walking where I used to hate walking. I am afraid for when he goes to transplant and won't be able to leave his room what that will do for his mental state not getting out to see all the nurses and friendly faces in the halls encouraging him and chatting. We have an excerise bike they brought into the room so I will hope to get that again, but jut the change of scenery is huge for us. I don't see other kids leave the rom here. I don't know how they do it. It is not much but we gotta take what we can get. So today I see this as a great accomplishment and achievement for Daniel. He has come such a long way. I told him on our walk today how proud I was of him and for how much he has overcome. He said he couldn't believe that all the PT was going to give him was a stupid sticker and then laughed. I sad I would get him anything he wanted and he said he didn't need anything in here needs. It just goes to show how little you need to exist on. All you need is your health right?
Not much going on these days. We are just in the holding pattern. Today is day 28 and although 30 days is typical for a round of consolidation, not so much for Daniel. He is at the bottom of his numbers right now and has been at around ANC=10 for about a week. Again typical of Daniel's pattern. Did we mention Daniel doesn't follow the typical pattern of most kids. That is okay because our mindset is prepared for it this time to help us cope with extended stay. For most kids it is a four week stint, we expect Daniel to be about 6. Anything else will be a pleasant surprise. Actually his monocytes are slowly but steadily rising which again are the indcators that his ANC (a composite number) will soon follow and he will be able to go home soon. His ANC has to reach 100 to go home. The countdown or rather countUP is on.
We are comfortable in our routine as strange as that sounds and are just happy that Daniel is happy and feeling good. We are nearing completion of our walking marathon this week and I just completed drawing the full cast of South Park on the windows for room decoration. Of course as soon as I finished he then thought to ask me if I could maybe make the full roster of fantasy football jerseys. Back to the drawing board (literally). Once again we are fully immerse in Daniel's football (p)review radio show Monday and Friday (it is now posted on the regular weekly hospital events calendar) at 2:00 PM and busy with daily school work, however we are up for healthy visitors whenever possibly. Although there are tighter restrictions at the hospital for flu season now as a whole we are up for company with a morning call ahead. We have been here going on 4 weeks tomorrow so it is going into looney time. Never did I expect to be so overcome and overwhelmed as I was last night by the experience of going to the Light The Night event at Washington Park. Plus I was so glad that my parents and Matthew went with me. First of all the size of the event was massive and to realize how it has grown over the years is incredible. Let me back up, first of all when we got there we parked on the far west edge of the park and began to walk in. when we cleared the lake and then the volleyball fields the tents came into view and I saw that this was not a small deal. I was shocked. I had no idea it was this big of a deal. I knew Daniel's friend Hannah had done this walk in honor of her Aunt Patti for years but had no idea what it was all about. I wasn't expecting the crowd that I was walkinging into and was suddenly taken aback. But I was there with my walking shoes and I was there to support Hannah and Daniel and after all, Daniel and I have been walking around the hospital unit so much I actual felt in shape enough to get around the lake without huffing and puffing. As I got a little closer to the tents with my Dad beside me became quickly overwhelmed and frankly very panicky. There were literally thousands of people in a huge tent village of unorganized loud music chaos with kids running everywhere (at least I my eyes). Remember, I have been in a confined sterile environment for months now. My head was swimming until I somehow spotted the beautiful Leslie Sidell amongst the sea of people in Patti's Team Tent. She lovingly welcomed me and introduced me to her entire family. I learned all about Patti and some of Patti's story. Patti was one of the founder's of the Light The Night Walk many many years ago when it was just a small idea that began in Cherry Creek. The family is in awe of what has grown to as they all looked out over the crowd in amazement of the night and what it had become for so many. Patti may have lost her fight many years ago but what has become of this night is her legacy. And what it is doing for other families such as mine is beyond words. I spoke with Pattis sister and her parents and sister in law and their kindness and support was again overwhelming. They were all so encouraging. Then Leslie pulled out the banner that she had made for their team to walk with and that was the end of me. After decades of walking for Patti this year their was Daniel on their massive banner, with footballs and helmets and everything important to him. Hannah this 14, oops now 15 year old amazing young woman found it in her heart to include Daniel in her fight and shine a light on my boy in her cause. All those thousands of people were their last night for the same reason but all the kids that came out to carry that banner and walk with us were there for Daniel. Pattie and here family started an amazing thing that raised over a million dollars last night for an amazing cause that is so needed and and all I could think about was how I wished I wasn't there and didn't need to be. When the speeches started I actually listened. I listened to every word and every story and I cried for every person with their story because I am living everyone of them now. Never in a million years did I think I would be here. Then there was the lighting ceremony. There are these lanterns that are meant to be lit, hence light the night. And by the way, what beautiful weather it ended up being for the night, thank goodness. First their was a moment of silence for all of those that have passed from these horrible blood cancers and a tribute was made and all those that have lost someone lit their yellow lanterns and lifted them in the sky. There were what seemed like hundreds if not thousands and I cried. It was so beautiful and so sad and so surreal and then they called for the red lanterns that were for supporters and thousands lit and raised and the sky filled and then there was the call for the white lanterns and that was for me. Those that are living with or survivors of a blood cancer. There were many, but far fewer. but I lit my lantern and raised it and I cried a little more. And Leslie's Mom. Patti's Mom stood with me and hugged me and said I was not alone. I was crying and I told her that I didn't feel alone. And It is true. I don' feel alone I feel very supported. And I also said that there is way to many people here to need and that makes me so sad. I am so sad for all those families and their losses and their need for support. It took a while to get everyone walking but once we actually got to the lake there was a pause. I didn't know what was going on until I realized that the lake was now surrounded by all the walkers and everyone was looking at the reflection of the lanterns in the lake. It was a beautiful site and yes I cried some more. I walked and talked the whole time and yes it was all about Daniel which I suppose I am allowed to do on a night like tonight. I lost my mom at the beginning of the walk. Se told me she walked with a lady carrying an entire tray of macaroni and cheese (kind of unusual) that was a 30 year survivor, Matthew of course took off from the beginning and walked with all the kids which I as glad he did. That is his support. And I made it around the whole lake and had energy to spare and I am glad Matthew came and saw friends and am glad my parents came and saw the support that people can give Last night was a wonderful and happy and sad all at the same time. Just a flurry of emotion. I can't say enough to the Sidell and Robinson family and Hannah especially for including us in their special event. It means so much to me. I took the lanterns back to the hospital and told Daniel all about he night and they are now hanging in our room as night lights.
With my parents in town we are trying to fit in the most of their visit. Even though, like everyone else they want to be helpful, we don't really need anything but quality visiting time. And that is just want we got last night. Matthew came up to the hospital after school and the boys played some basketball in the outer room. Yep, Daniel kicked Matthew's butt. My parents took the opportunity to give Matthew his birthday present early since they won't see him again before then (Oct. 21st). Although always hectic trying to synchronize agendas it has turned out nice and I am glad that my parents got to see Daniel still feeling so good. They won't be able to see him again until after he is home after transplant so who knows when that will be. I know that will be hard for them. So I hope they enjoy every minute.
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July 2016
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