The Battle - Brandon Hacker - LATEST UPATES will always be in BOLD at the bottom... Wed. 10/14/2009 The Battle - Brandon Hacker - "A.L.L." - Acute Lymphoblastic Leukemia Friends, Family, Students, Clients, Colleagues... Most of you already know The Battle that has begun as of Thurs. 10/8/2009. Some of you may not. I hope this statement will bring everyone up to speed on what is going on, and hopefully will answer the questions that are still out there. We found out on Thurs. 10/8/2009 that my son, Brandon William Hacker, age 13, has Leukemia. Needless to say, our lives have changed over night and forever. First let me say, THANK YOU SO MUCH for the wonderful prayers, comments, emails, calls, visits, gifts, etc., that have flooded in our direction since we found out about this less than a week ago. We truly are blessed to be friends with so many wonderful and caring people. In the last week alone I have received over 200 pieces of communication from people who are concerned, on Facebook, MySpace, Twitter, emails, calls, etc. That means so so much! The first thing I want to stress to everyone reading this is that it is critical NOW MORE THAN EVER that I WORK AS MUCH AS POSSIBLE, and MORE THAN EVER. I have received a few comments from VERY WELL-MEANING "well-wishers" over the last week to the effect of, "Oh my gosh, the news is terrible! You need to drop everything and be at your son's bedside right now! We will stop music lessons for now, and when you get your son's health stabalized, just let us know, and we will be back"...The reality is, that is the WORST POSSIBLE THING someone could say to me, my son, and my family right now. I understand the good intent with that statement, but what I want everyone to realize is that I have got to provide a stable home life for my son now more than ever. I have got to make sure house payments, utility payments, car payments, food shopping, etc., happen without delay! By "dropping" any of this, I do immediate damage to my son's ability to recover. If you stop doing business with me, you essentially "fire" me from my job, and take away from me my ability to take care of my family and my very sick child, who, just a few days ago was VERY near death. I have already had lengthy discussions with financial representatives from various offices, even as my son lays in a hospital bed in critical condition (you'd think they would at least have the decency to wait until the bills are generated, and until he is somewhat stabalized !), and I can tell you that just to get started, we ALREADY have a medical bill into 6 figures. Before this 3 year Battle is over, and because of the severity of my son's condition, hence the very real possibility of recurrence later on, it is not unrealistic to assume we will have SEVEN FIGURES of bills before this is completely over with. Let's not forget that Brandon is Autistic - Asperger's Syndrome, and this adds additional complications to the whole Battle on several levels. Also, there are other severe medical diagnoses in addition to the Leukemia. Leukemia is just the start, but there are other problems that I will explain in a moment. That being said, taking time off of work or "dropping everything" is the very last thing I need to be doing, and it would be financial suicide. I not only need the music student load I always have had, but I need to INCREASE it. I need to do more recording, performing, band gigs, piano tuning, videography, etc., then I have ever done! So...I am asking you students, parents, clients, etc., to please try your best to NOT miss music lessons or payments - even go so far as to recruit more students for me, and also, let's all work together to try to get more recording customers in my studio. I need to work work work! There are bills to pay, and aside from Brandon's astronomical medical bills, I have my regular monthly bills, AND the added expense of a LOT of commuting back and forth to Atlanta, rooms, etc. It's clear and obvious that my humble music business will NOT be generating 7 figures of income (not even 6 figures) any time soon, and that after the powers-that-be get done chewing me up and spitting me out, I will almost surely lose my house, cars and any other assets I have accumulated, but to be sure, I need to work just as much as possible to DELAY these occurences for as long as possible. ...Which brings me to...the "routine"... I am now going to ask students, parents and clients for FLEXIBILITY. The plan as I know it for now (which will almost surely change at some point) is that once Brandon gets discharged from Egleston / Children's Health Care Of Atlanta / Emory, we will have weekly commutes to Atlanta for chemo. As I understand it now, these treatments will be on Tuesday mornings, so, I'm assuming that we will make the journey on Monday night, settle into a place such as Ronald McDonald house or similar, wake up first thing Tuesday morning, go for the chemo treatment, and then we should be on the road pretty quickly thereafter. I have had several medical professionals tell me that Brandon's particular type of treatment will be quick, and if that is truly the case, we should actually be on the road home on Tuesday in time for me to make it back for music lessons on Tuesday afternoon. HOWEVER, again, I am going to ask parents and students for FLEXIBILITY in scheduling, because we all know there are going to be times when something unexpected comes up, such as Brandon having a reaction, getting sick, fever, etc., etc., and so there may be times when I have to call or text and ask you for another day that week. Again, this will be a 3 year battle, however, the intensive chemo will only be for the first few weeks, and then he will drop back to a less frequent schedule. I would like to hear from as many parents and students as possible on this, so I know you understand, that I have your support, and that you are willing to work with me on this... In short, I have had SO MANY people tell me they are thinking about us, praying for us, and that they are there for us if we need support. My answer to that is, the best way you could support us right now is to support my business by continuing to do business with me, recruit more business for me, and spread the word that Steve Hacker simply is the VERY BEST this area has to offer in terms of music lessons, recording services, etc. I'm not asking for charity or a handout - I'm sickened by the thought. I'm asking for EXCELLENT and CONSTANT word-of-mouth advertising. That is the ultimate support you could provide for Brandon and my family right now, and I thank you in advance for it, because I know those of you reading this already know of my excellent reputation, qualifications, and that I am simply the very best at what I do in the music business in this area. I'd like to ask each of you reading this to look again at the video of Brandon from a few months ago demonstrating his TRUE MUSICAL GENIUS in Perfect Pitch, and realize that I hope we can ALL work together to some day return him to this state. I need everyone behind me in order to make this happen though... http://www.youtube.com/watch?v=Tc6qpNgiGHw ******************* Brandon Hacker - Leukemia Time Line: 1) Last Couple of Months, up until Wed. 10/7/2009...We noticed that Brandon was simply not feeling well. Brandon had a fall on the diving board on our swimming pool around the end of July. It was really not so much a fall but rather, his tendency to jump flat-footed off the diving board and not JUMP OUT FAR ENOUGH to CLEAR the board. I guess this event, this time around, in some small way, saved his life. So again, this time, he didn't clear the diving board as he headed into the pool feet first, but this time he hit the diving board HARD. The board hit his (right) butt, lower back, kidney area and side (as he twisted), and generally "knocked the crap out of him". We knew he would be sore (wow, if we ONLY knew!). We got him x-rayed, and the x-rays revealed no breaks or damage, but he was clearly in a LOT of ongoing pain, and it wasn't seeming to get any better. As his condition seemed to not improve, around August 6th, we had blood work done on Brandon, and, according to that doctor's office (in another town away from Bainbridge), all blood results were "normal", and they didn't feel like it was necessary to bring Brandon back in for further examination (whether or not that blood work was TRULY normal 2 months ago is a topic of another discussion later on, but suffice it to say that this little bit of information is very interesting to say the least). So, we went on faith that what the doctor was telling us was accurate; no breaks, the blood work was fine, and he would get better, albeit, slowly. Well, CLEARLY Brandon was NOT getting better. He was getting SLOWER AND SLOWER. As time dragged on, he was getting slower and slower, thinner and thinner, and paler and paler. It would take him a LONG LONG time to get dressed in the morning, and stepping up on the school bus each morning was a real chore. We kept saying to ourselves that it would eventually get better, but nagging in the back of our minds was the worry that something was just not right. However, the doctor said everything was fine, and so he MUST be getting better soon, right? Now, by a couple of weeks ago (a couple of weeks before the Leukemia diagnosis), Brandon was hunching over to walk like a little 90 year old man. He had to grab on to furniture to support his wait just to walk around. He stopped eating almost completely, and he was losing weight FAST. I suspect he was down to around 60 or 70 lbs from a normal 80 lbs for him. His color became extremely pale, and he would bruise super easily! Also he began having "Petechiae" (speckled bruising) on his neck, and all he wanted to do was lay around and rest. Still, his moods seemed good and he was seemingly happy. Could it be Mono? Could it be the fact that he had just hit a growth spurt and that his biochemistry was changing? NO! Something was WRONG! We called the same doctor back and said just that; "something is wrong and you have GOT to do more testing!"...Brandon's next appointment was on Thurs 10/8/2009, and it was BRIEF. The doctor said "GET HIM ON A HELICOPTER TO EGLESTON/ATLANTA NOW"...and even the doctor was clearly scared...so... 2) Thurs. 10/8/2009...Brandon is rushed to Egleston / Children's Health Care Of Atlanta / Emory with "Grandma" and "Mommy" along for the ride. There wasn't enough room for "Daddy", so I stayed behind and packed clothes, etc., and then high-tailed it to Atlanta later that night. When I got to Atlanta that night, Brandon's color was IMMEDIATELY BETTER than it had been in several days. They had already given him a blood transfusion! In essence, Brandon was "bleeding to death", and he likely only had a few more days to live if he had not gotten to Egleston when he did. His Hemoglobin was 5, when it should have been around 13. His platelets were ridiculously low. All this explains the bruising, the paleness, the lethargy, etc. Brandon's diagnosis of "A.L.L." - "Acute Lymphoblastic Leukemia" came very quickly the same night, and in ADDITION, we found out that his spleen was severely swollen, and that he also had two compression fractures in his spine because he also has severe Osteoperosis generated by the Leukemia! The fractures could have happened from the diving board fall, getting knocked down at school accidentally (which happened a couple of times - and is a normal part of playing around at school), or even just sitting or walking, around, given the fact that his bones had become so brittle and had demineralized so severely. So...I had just learned that my son not only had Leukemia, but that he also had the skeleton of a little 90 year old man, and that even minor impacts would breaks his bones, hence, he had fractures in his spine. Wow, that explained a LOT of why everything was declining so quickly! ...So then the terror, sobbing, anger, etc set in for all of us... 3) Fri. 10/9/2009...It dawned on us that in all the rush to get to Atlanta, and even though I had supposedly packed everyone's belongings for a stay in Atlanta at the hospital, my mother had been without her insulin and other prescription meds for almost 30 hours! So, leaving "Mommy" in Atlanta to stay at Brandon's bedside, I brought my mother back home to get her insulin and other meds and for her to get herself together for a bit. We had been told that Brandon would have surgery on Monday morning, so we stayed home to rest for the big week to come, and to make sure we had everything. 4) Early Sunday morning, 10/11/2009...My mother and I went back to Atlanta to be with Brandon and my wife, and at that point nothing much had changed other than the fact that Brandon was feeling some better and his color had much improved because he had been given even more blood. By Sunday night he was in REALLY GOOD shape. Some of you have seen the guitar pictures on Facebook and Twitter of him and I playing guitar that night, but that was Sunday night when his blood numbers were higher than they have been in a while, and his appetite was also great. Compared to the last several days prior, Brandon was eating like a horse. That made everyone feel great. 5) Monday morning 10/12/2009...Brandon was SUPPOSED to go into surgery first thing, but his platelet count had dropped again, and they needed to get those numbers up, so more was given, and finally by 3:30pm, after an agonizing wait, and the poor kid not being allowed to eat for nearly 24 hours, Brandon went into surgery to have a "port" put into his left clavical region (left upper chest, just below the collar bone - a permanent port for giving him chemo, blood, etc., without having to use an IV), to get his first dose of chemo into his spine, and to have a Lumbar Puncture (spinal tap), and Bone Marrow Asparation (testing to see how bad or what stage the Leukemia was in - results of which we will not have for a while)... The surgery went well but he came out around an hour and a half later in a LOT of pain. Worst of all was his sore throat from the oxygen tube they put down his throat. He kept trying to clear his throat and saying something was stuck in his throat, but he didn't understand that there was nothing there other than the scratching/irritation that the tube had created. His port site was sore, but he screamed off and on all night because of the throat soreness. It was pretty bad. 6) Tues 10/13/2009: I brought my wife Traci home for the first time in all of this, because we were confident that Brandon would be discharged soon and we knew we needed to get the house in order for his return. Grandma stayed with Brandon at the hospital and is there with him now. Tuesday was also a pretty rough day because the throat soreness continued in spite of two days worth of Morphine and other medications. Brandon could not eat or talk because of this pain. The doctors and nurses told us for several hours running, starting from RIGHT AFTER SURGERY on Monday, that they would bring Brandon a numbing throat spray. That throat spray didn't come until Tuesday mid-morning, approx 18 hours after they said he would get it. When it finally did come, it helped a little, but not enough. In addition to Brandon getting his first chemo in his spine during surgery on Monday, he also got his first "regular dose" of chemo Tuesday morning as well... By Tuesday afternoon, Brandon's "port" surgery site was leaking blood severely, and the doctors were called in. Possibly it needed more stitching, or possibly it was because his platelets were so low again, but, either way, he was bleeding a lot...soaking his gown and the bed... 7) Wed 10/14/2009: Morning: Brandon began to feel some better and started talking and eating a little. Port/surgery site still bleeding... Afternoon/Evening: Doctors were able to get the bleeding stopped by giving Brandon more platelets, and by evening, Brandon was talking, laughing, watching movies ("Nemo" is his favorite), and eating pretty well again. Not to be gross, but he also started going to the bathroom again, which was NICE, considering he hadn't done so in DAYS. He was now eliminating a LOT, and that was a GREAT sign. As it stands now, as I type this, late Wed night/early Thurs morning, Brandon is feeling much better but still not out of the woods. His Hemoglobin has dropped back down to around 7 or 8 which is still critical. Doctors originally wanted to discharge him tomorrow (Thurs 10/15/2009), but now they are going to wait until Fri or Sat because of all the delays that have happened. The kicker is that we have to turn right around and take him right back to Atlanta on Tuesday for chemo again. It almost seems wiser to me, to KEEP HIM IN ATLANTA until Tuesday until after the chemo is done. Otherwise, the poor little guy is looking at around 8-12 hours of extra car riding that he really should not have to deal with....
8) Thurs. 10/15/2009: Brandon has been fitted with a back brace to hold his fractured spine in alignment, and he is now "walking up a storm" ! As of this writing, he is actually walking around and having more vigor than long before he went to the hospital ! He has walked around on several floors of the hospital, checked out the viewing floor area where he can see the Atlanta skyline, and spent some time checking out the AWESOME Player Grand Piano in the hospital lobby! Also, he has GAINED SEVEN POUNDS since he entered the hospital a week ago, and he is eating everything in sight! Part of his chemotherapy regimine is large doses of Prednisone, and this means that he is going to "puff up" pretty soon, and that, according to the doctors, he is going to get one heck of an appetite as well as some wicked mood swings. That's ok though! I'LL TAKE IT ! :-) The doctor says that the Prednisone will make his brain send the signal that he is HUNGRY, even when he has a full stomach, so he will probably be trying to eat a LOT, but again, I'LL TAKE IT !!! His blood counts continue to be low, but that is indeed part of Leukemia and chemo. It is very nice to have him up and around, playing, surfing on the computer and seeming to be so much better! HE IS COMING HOME TOMORROW (Fri 10/16/2009) !!! 9) Fri 10/16/09 & Sat 10/17/2009: Brandon came home from the hospital yesterday! YAY! He is eating us out of house and home! Thank you Prednisone! :-) Even if he becomes a little "chunker", I'll GLADLY take it, as compared to the "skeleton" we were dealing with before he went into the hospital. He seems to be feeling a little better, and is walking around some. The back brace helps that. I'm just glad he's eating a LOT - I mean a WHOLE WHOLE LOT - I mean more than I would normally eat, and I eat a LOT LOT LOT...lol...If he starts feeling really good in the next day or so, I believe he and I may actually sit down and play some piano and guitar :-) ...Ok...so it's back to Atlanta on Tuesday for chemo, probably another blood transfusion, etc. If all goes well I should be back in time, and not miss any music lessons from the trip. It's early enough in the morning that I think, even if he has a lengthy (usually 3 hrs) transfusion, we'll STILL be able to make it back on time. Ok everyone, please email me or Facebook comment me your opinions on this: (1) The hair loss is COMING, and coming SOON - even in this first phase of treatment. Should we go ahead and shave his head? That is a current fashion anyway. With his Autism, he is NOT very fashion-minded, so I'm not sure if he would even much care. (2) Secondly - and I really need some ideas on this one - I'm thinking about taking a "make lemonade out of lemons" approach to this whole thing and the Atlanta trips. Firstly, there's no reason why I can't start to educate myself in something new on these trips via audio CD books. I CAN'T STAND STAGNATION or sitting still !!! I'm looking around for what is available, and will have 8-10 hrs of riding on these trips. I REALLY wish I could get another college degree via audio books, given that there will clearly be enough time, but I don't think any such programs exist. But I will be looking around, including of course public libraries, although, I've never been impressed with their collections (I'm probably just too much of a nerd for my own good). 3) I don't think it's wrong of me (please correct me if I'm wrong) to try to make these Atlanta trips pay for themselves. To my Atlanta friends reading this, and to anyone else who has family, friends and connections in the Atlanta area: Since my wife will be going with me on these trips, and Brandon will be in the BEST POSSIBLE care and supervision via my wife and the amazing Egleston staff, I just can't see any benefit to me sitting in the waiting room for several hours reading magazines while Brandon is treated, when I could be making these trips pay for themselves, and perhaps even profiting. That being said, I'd like to FIRST AND FOREMOST (because it has the highest income-to-time ratio of all my services), find pianos in the area to tune - probably most abundant, CHURCH pianos. Also, theaters come to mind. I know from research already that Atlanta tuners charge TWICE what I currently charge locally, and so to me, that seems like a no-brainer! It's quick, easy (usually), and usually pays instantly, and I could do a piano or two and be back to the hospital in plenty of time. I could also do studio session work and lay down a few tracks here and there for people who may need it in their studio, but again, piano tunings have always paid the best for the least amount of time spent. Does this make me a bad guy to explore these kinds of avenues? Someone told me even house-call music lessons for home-schooled kids as well might be a good idea. Tell me whatcha think, and if you know people in Atlanta, or have potential connections there, or are there yourself, give me a shout... I can see it now: "Steve Hacker Productions - Bainbridge - Atlanta - Nashville" ...I don't see anything wrong with that. Does anyone else? 10) Sun 10/18/09 - Wed. 10/21/2009: This is not a happy update, like the turn-to-positive last update. Firstly, let me say that I have heard MANY people's suggestions to create a CaringBridge site, and I will do that just as quickly as I can. Please stay tuned. For now, this is quick and everyone knows how to find it. The plan was that when I got done in the studio this past Monday evening, Brandon and my wife and I were going to drive to Atlanta and settle in to get ready for Brandon's early Tuesday morning appointment for chemo and such. Well, we didn't get that far. We had to rush Brandon to Bainbridge ER early Mon night because he had bottomed out from the chemo (apparently). We STILL don't know for sure what happened but we DO know that he was severely weak and dehydrated - while having a GREAT appetite from the Prednisone, he just WOULD NOT drink. I think that is what got him, combined with the doctors telling us that day 10 is the worst "bottom out" day for chemo, and Monday was day 8 so he was certainly close at that point. I think and hope that is all that was wrong, but the doctors are being pretty darn tight-lipped at this point. We don't know much. He has lost all the weight he had gained back and MORE in spite of a great appetite, now in the low 60's (and he is 13 years old and approx 5' 3" tall ! ) and is extremely pale, thin and generally extremely emaciated. He also now cannot stand on his own without assistance (he WAS at least walking around). Needless to say we are extremely worried. The bottom line is after Bainbridge ER communicated with our doctors at Childrens Healthcare of Atlanta at Egleston Monday night, Egleston wasted no time sending a plane down to the Bainbridge Industrial Park. They were in Bainbridge within a couple of hours and road the ambulance from the airport to the hospital, came in looking very "elite" in their very cool flight jackets (it looked almost like the airforce had come to get Brandon), put Brandon on the ambulance back to the airport (10 minute ride), and they were IN THE AIR within 15 minutes of leaving Bainbridge Memorial ER. There was no room for me on the plane, so I stayed behind and took pictures: ...I thought it was pretty cool that only 45 minutes later my wife texted me and said they had arrived safely. I hadn't even gotten home and settled down good when they were already in the Egleston ER :-o ...wow, this "flight thing" is pretty cool...lol... Also, I must thank the many people who have extended offers of support, kind words, prayers, etc. I hear from WONDERFUL people every day, and to B.B., thanks for the FedEx package! I don't think I even know who you are. I believe you are one of my YouTube Channel fans? Not sure, but the package was REALLY NICE and is going to be VERY HELPFUL! Also, thanks so much to my guitar student, Alex Burney, who, unbeknownst to me, as a surprise, initiated an arm band campaign for Brandon. While I said earlier in this blog that I was sickened by the idea of "handouts", I realize that at some point, I may have to cave in and accept. I ALWAYS MUST first exhaust all opportunites to HELP MYSELF through work first, and so I still will implore readers first and foremost to help my business along through great word-of-mouth and online adverstising, but that being said, the fact is, the bill has already surpassed a quarter of a million dollars in less than 2 weeks, and we have 3 years to go. This does not include travel/lodging/food/prescriptions/etc. I don't know how all this works. I have had many people say they want to do this or that fund raiser or similar, but I really have no clue what to do, how to answer, or what...I'm just lost...I know my inlaws dropped a plan for some sort of a "Poker Run" in Florida because the govt wanted to get their grubby hands involved and said there had to be lawyers and accountants and a host of other crap involved. It just overwhelmed them so the idea got ditched. It's amazing how the good gestures and good intentions of people can get wrecked so quickly by bureaucracy... Again...Thanks to Alex Burney for this: These arm bands are now on the arms of hundreds of kids all around Bainbridge. I think Bainbridge High School students only though - I could be wrong. I don't think they have hit Brandon's Bainbridge Middle School yet. Does anybody know? : 11) Sat. 10/24/2009: YAY! I drove to Atlanta Thurs night/Fri morning 10/22-23/2009, and brought Brandon and Traci home! As usual, a Grape "NOS" energy drink saved the day! LOL! Surprisingly, after just 2.5 hrs of napping Thurs night, I chugged a 22oz Grape NOS and drove to Atlanta feeling GREAT and without the slightest hint of drowsiness. Those of you who know me, know that is AMAZING for me ! Driving back around mid-day Friday was rougher but still not too too bad...ok...it WAS pretty bad, but I think I stayed awake...um....I think... Brandon is home and resting well for the moment, and for now, he seems to be in a very good mood and seems to feel a LOT better. His color is better, and he still, through all of this, has a great appetite. We still just have to watch very carefully about dehydration. That was one of his biggest problems this past week - not drinking enough. We still have to help him get in and out of bed, and while he can stand for a bit, he's still shaky and very susceptible to falling, and thus, like an old person with osteoperosis, could very easily break a bone. The doctor wants him walking around for very brief periods, but for right now, even standing is quite a task. Some people have asked about visits, but please understand that at this time, even visits from people like at-home teachers and such, is simply impossible. Brandon has NO IMMUNE SYSTEM, and even in the hospital or anywhere outside of our house, he has to wear a mask. The slightest "bug" that our normal bodies would fight off in an instant, could be potentially life-threatening to Brandon. So for now, no visits please, and rest assured, as soon as he is able, he will be out and about and back in school. Right now we need these few months to rebuild his body first... 12) Tues. 10/27/2009: Went to Atlanta and back without a hitch. Did the chemo thing and was back for music lessons Tuesday afternoon. Traci stood around and lost track of time talking for an HOUR after chemo, and so what I thought was me waiting for an extra long medical visit was idle chit-chat in the office, when we needed to HIT THE ROAD! Time to go dear! LOL! So, we hit the road at light speed in the worst rain I've ever driven in. NO, I'm NOT bragging about driving so fast in that weather (the WHOLE way home), but because of the chit chat, and thus, the need for speed, we did make it back in record time: 3 hrs 20 minutes from Atlanta to Bainbridge, and I was back teaching by 4:30! Ok...yes...I DON'T want to do that any more. It was NOT fun...I suspect Traci will watch the clock a bit more carefully this next time though...lol... 13) Wed. 10/28/2009 - Mon. 11/02/2009: Chemo seems to be ok so far on Brandon, and he still seems to be getting better color, better appetite, and physically stronger. He's sitting up more, talkative, joking, laughing, and to be sure, mentally speaking, through this whole thing, he has NOT MISSED A BEAT. We have had him standing and walking only TINY amounts to this point. No further than across the house, but after a go-ahead from the doctor today (Mon 11/2/09), that it was ok for him to walk as much as pain would allow him to, Brandon and I took an assisted walk (his elbow linked in mine) from the house, across the front yard, to the street, and back. THAT WAS A BIG DEAL, and a great birthday present for me ! Thanks to everyone for all the great birthday wishes by the way ! So far, his medical appointments have been by wheel chair (including ANOTHER trip to the Bainbridge hospital for more last minute blood lab work, per surprise orders from Atlanta last Wed the 28th), but I think at this point, we are going to slowly walk these distances now, INCLUDING from the Egleston parking garage, up the elevators, and into the Aflac Out Patient Clinic for chemo. I'll try to post sooner this time and let everyone know how it goes. It's late Monday night 11/2/09 right now, and I've got to go ahead and get my ducks in a row for the trip in a few hours... 14) UPDATE !!! Wed. 11/4/2009: Ok...so we made it back in one piece from Atlanta last night (Tuesday NIGHT)...but just barely it felt like. It was a ROUGH DAY on several levels. To start with, about 30 miles south of Atlanta, there were NOT ONE, but TWO accidents that STOPPED TRAFFIC COLD in ALL LANES. We sat still for over an HOUR. This made us late for Brandon's 8am Tuesday appointment, but they still were able to treat him (you CAN'T just skip chemo), but it was greatly delayed, and the whole rest of the day got messed up. We got home LAST NIGHT after dark, not in the afternoon, like we normally would have. Yesterday also brought some bad news on several other levels. I won't get into any big details, but suffice it to say that I now know for sure that our society, government, and country as a whole TRULY IS stacked in favor of those who are too sorry to work, or who are here illegally, and that those of us, myself included, who have a great work ethic, and truly enjoy their work, get kicked in the crotch by the system on a regular basis. I see it now firsthand. In addition to that "great news", I also learned for the first time yesterday that Brandon is almost guaranteed to have nerve damage from his 3 year course of chemo, and that his bone condition/Osteoperosis is, at least on some level, going to be permanent. In other words, like a very old person, he will ALWAYS be at extreme risk of breaking bones, and that his body in general will ALWAYS be frail, and on top of that, the nerve damage side effect of the chemo will greatly reduce reaction time, control of his feet, and the one that worries me the most: His fine motor capabilities - e.g. playing piano or guitar. YAY! Just tons of good news yesterday. To say the least, Brandon is currently in a "use it or lose it" state, and the doctors gave us permission to do absolutetly ANY and EVERY "normal" activities we can get Brandon up and doing (nothing dangerous to the body of course). So today, we walked around the entire perimeter of the yard (the longest walk he's done in WEEKS - holding onto me of course), and played piano and read books SITTING UP for a couple of hours. Interestingly, his piano playing was pretty darn good - at least as good as it was right before his diagnosis. I'm still worried about long-term fine motor effects on his fingers though. I myself am a FIGHTER. I remember when my right index finger was crushed off, after hours of re-attachment surgery, I was home the SAME NIGHT playing piano one handed to see what I could do to play music in spite of the injury, the SAME NIGHT. The accident was on a Monday, and I was back in the club where I had a house gig, playing piano LEFT HAND ONLY by that Friday night, and did so for several months before I even got my right hand back. Also, later, when I had surgery on my right hand for tendon and ligament work from the finger reattachment, I went to my gig the SAME NIGHT after that surgery with countless stitches zig-zagging and "railroad tracking" all over my hand and played piano all night (5 hours) WITH BOTH HANDS. I think the greatest compliment I have EVER gotten as a musician was when the drummer of that band looked at me during that gig, seeing the stitches covering my entire right hand, and said (and please forgive the language - the drummer said this - not me! - lol) - "Dude...you have got the biggest b$%#s of any musician I've ever played with"...that was SUCH a compliment, because he knew the pain I was in, and yet, he also knew that the music was more important than anything, and that it would be "over my dead body" that such a thing would stop me from playing music. IT IS THAT KIND OF FIGHT-SPIRIT THAT I WANT TO INSTILL into my son Brandon during all of this. A lot can be taken away, but your knowledge and your spirit can't be taken away if you don't let them take it away! So you can bet Brandon and I are now going to be back on our EVERY DAY music routine as well as lots of walking, and I suspect next week, we are going to go ahead and begin having school work sent home. He still CANNOT be exposed to outside visitors, but he can at least begin to get his school chops back going I think. Next Tuesday is a BIG Atlanta day because Brandon is having another LP (Lumbar Puncture) to figure out where he is in terms of status, which will also decide the course of treatment from here over the next 3 years...Thanks for reading! ******************************************************************************************* Thanks, Steve
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