My 26 Year CML Leukemia Adventure

The trial nurse at John’s Hopkins told me to keep my STI-571 pills in the refrigerator. Interesting I thought, but whatever means necessary. Who was I to question her. Cold pills it is. Also, I would take one 400 mg. pill everyday. My choice would be to take it before bedtime. At this point, because I was enrolled in the FDA trial, the drug would be given to me at no cost. This would last for the term of the trial. The regular price of STI-571 would be approximately ten thousand dollars per month when and if approved for regular use. A tremendous amount of money. The cost of saving lives I guess.

I began taking the drug as prescribed and hoped for the best. I knew that the effects on my Leukemia would not be immediate. I was beginning to feel some relief after discontinuing the Interferon injections. The side effects so severe that they had basically crippled me and severely affected my quality of life. The change from injections to pills was so sweet. After two weeks, I will be heading down I95 to Baltimore for my second appointment. Will there be any significant change in my blood? Let’s hope so.

We scheduled my appointment for a little later in the morning at JHU hospital so an overnight stay wouldn’t be necessary. My dad picked me up in the morning and we headed south for what I hoped would be a positive experience. Other than the fact that I would be receiving another Bone Marrow aspiration today, a reduction even ever so slightly in my WBC count would be so encouraging. If not, well, that would really suck. The traffic was heavy as usual along the 95 corridor but we made my appointment without any issue. Dr. Miller met with us first and we discussed any issues that I might be having with the drug. So far, so good. The residual effects of the Interferon were still present so there was no real difference in how I had been feeling. She also was welcoming any change in my status that was positive after our last meeting. She said that the bloodwork and aspiration results taken during my first visit confirmed that my Leukemia was progressing rapidly. She was anxious to complete the same studies again. So was I. Imagine, I actually was looking forward to another Bone Marrow aspiration. Mmm… not really. Let’s go.

JHU hospital had their own department for Bone Marrow Aspiration procedures. They did so many, I assumed, that it was necessary to facilitate the patients with this luxury. And relieve the doctors from having to perform them. After a quick trip to the phlebotomist chair, we made our way to the Aspiration department. The tech that was to perform my aspiration was a very tall woman with short platinum Grey colored hair. Although I don’t remember her name, we became well acquainted after the many times that I laid on her table. I always thought about how she felt just constantly inflicting pain on people everyday. What a job! She was good though. A real professional. Her experience made it somewhat easier, knowing that she really knew her stuff. Compassionate also. Here we go again. You know the routine. It never changes.

After a couple of hours, my visit was complete and the anxious period would begin. Now we would wait for the call from Dr. Miller for the results. Usually about ten days. Just before we would be heading back down again to repeat the process. Limping to the car, I knew that the pain in my back would be an afterthought. The pain in my mouth would be taking over as soon as I began consuming the Old Bay smothered crabs that were waiting for me at O’Bricky’s. The sores, still in my mouth from the Interferon, were no match for the taste of those delectable crustaceans. The taste was worth the pain. Just like the Aspiration today. You weigh the good with the bad. Crabs are good. Leukemia bad. Just get me the results…Please.

Next up: Results, Crabs and Lor’s Turn

This was it. Everything we had been wishing for for the last six months was about to to come true. The call came in from Dr. Miller’s office and I would be making the trip to Baltimore in the next two weeks. The famous Johns Hopkins University Cancer Center was waiting for me with open arms. My current situation had me feeling pretty bad. My last CBC bloodwork showed that my white cell count was beyond acceptable limits and rising quickly. I was so tired. I looked like shit. My appointment couldn’t come quick enough.

We made plans to drive down to Baltimore the night prior to my appointment and stay at the Sheraton hotel near the Chesapeake Bay waterfront. My appointment was at nine am in the morning and I didn’t want to be late. My Dad would be accompanying me on the first trip. He was so worried. He had discussed with me about his concerns before I had my Bone Marrow Transplant a few years earlier. He thought that maybe I should wait to see if other opportunities would present themselves while remaining on the current therapies available like the Hydroxyurea that I was taking. Wait for a less drastic procedure. A safer option. There wasn’t time then to do that. We had to move quickly. Now, on our drive down to Hopkins he wondered if I should or could wait a little longer and let others be the Guinea pigs for a while. Lol. Again, time was of the essence. I didn’t have the luxury of another minute to wait. I needed this drug now!

I had never been to Baltimore. An old city style town where the Waterfront and the Orioles baseball stadium were the centerpieces of the city. There was one aspect of our trip that I was so really looking forward to. Our family grew up savoring Blue Claw Crabs. We loved them. Every Friday night, my Dad would pick up a few dozen Steamed Blue claws at Walt’s Bar on Oxford Circle on the Roosevelt boulevard in Northeast Philly. You could smell the Old Bay when he walked in. We always had a great time with neighbors, cousins, friends, etc. ,Whomever. It was always open house, just rsvp so there were enough Crabs to go around. Pretzels, pickles, beer and soda finished off the menu. It was good times. Baltimore was famous for the crusty crustacean. Supposedly the best on Earth! If we were going to be in Baltimore, we were gonna have crabs. What a bonus! Get to save my life and eat my favorite food! Let’s Get it!

We reached the hotel around 5 pm and grabbed a bite to eat. Our conversation during the 3 hour ride centered around the science of what was the drug STI-571 and the hopes of what the study would accomplish. Being chosen to participate in a FDA drug trial is a big thing. This was no blind study. No placebos involved. This we knew already. So many sick people. Their lives teetering on the wire, like mine. No games. It worked and you live. It doesn’t and it’s over. How comforting was that. It better work. I was pretty nervous as was my Dad so we tried to turn in early. There wasn’t going to be much sleep tonight.

Morning light finally shone through the blinds and we got ready to go. The directions had us driving through some nefarious areas. Hopkins had been there many years. We reached the hospital finally. It seemed like I couldn’t get there fast enough. We parked the car, and made our way to the Cancer Center offices. The campus was enormous. Dr. Miller greeted us and invited us into her office. The pleasantries were short as she was very busy, but she reviewed my situation, as grave as it was, and welcomed me to the trial. She was a very big fan of Dr. Dave. Apparantly everyone was. Dr. Miller explained that my car would soon know its way very well to Hopkins. I would be a very frequent visitor. Beginning with visits every two weeks for two months and then monthly visits for an additional three months. That was a minimum. Each visit would include a Bone Marrow Aspiration, extensive bloodwork and consultation. Lucky me. Those were the terms. After signing a very large amount of papers that were necessary to continue with the program, I was led to an exam room to begin the regimen. Physical exam, bloodwork, more questions, the Bone Marrow Aspiration department, yes they had a dedicated department, and my final dosage instructions. And oh yes, did I have any questions? Hell yeah! Is it going to work??? The study nurse produced a brown paper bag with a brown bottle of pills. She simply answered my question with a smile and this line…” Don’t worry bud, This is Good Shit!” What else could I ask for.

I limped out of the hospital while my dad got the car. It was just after lunch time and I knew our next destination. A tiny street near the hospital where a highly recommended crab restaurant named O’Bricky’s resided. A small door in a brick row style building and a small sign hanging over it. The smell was glorious. The tables covered with brown paper and wooden mallets. The crabs were served Dirty, covered in Old Bay and waiting to be devoured. As we dug in my dad asked me how they tasted. My answer…” This is good shit”. A fitting answer and end to a crazy, painful, hopeful and blessed day. We hit the road with my bag of gold. Those pills were my hope for the future. The hope for A future. I would take my first dose that evening. Then kiss my boys and my wife. And wait. Wait for a miracle. I needed a miracle.

Next up: So Here We Go!

August ended with no relief in sight. The constant thought in my mind was that my birthday in the beginning of September may be my last. I would be thirty nine years old. We usually would spend my birthday celebrating with family down at the Jersey shore. It usually fell on Labor day weekend or the first day of school every year. Not the happiest of Birthdays, I really don’t remember much of the day, I’m sure everyone did their best to make it special, but deep inside, I wasn’t much for celebrating. Yes, emotionally, I was a wreck and preparing for the worst. Dr. Dave told me at my last appointment, a few days prior, that if there was no answer soon on the FDA study that we would be having to attempt another Bone Marrow Transplant. Most likely by the end of October. My Leukemia was progressing rapidly and things were getting desperate. I couldn’t take the Interferon injections much more. My quality of life on the drug was just not worth it anymore. It was doing nothing for me. Dr Dave knew this all too well.

I knew the impact of my condition was weighing on my family heavily. Anticipating the possibility, no, the reality, of my demise. My boys couldn’t help but see how I was failing. They were so great though. They kept me going through it all. The antics and actions of two little boys I loved so much helped me smile through the pain. So innocent. They were my best medicine. Lori kept fighting through it all. Immersed in handling everything the best she could. My Dad kept up the calls and letters push to anyone and everyone he thought might give me an edge to entry into the study. My Mom had a different angle. She went with her heart and her gut. She had fought her own cancer battle. She knew the deal. She had faith in the process and knew that I would be ok. She would reiterate that faith to my father and to me and to our family. Consistently. Dr. Dave…he knew it too. Remember… he told me so.

By mid September, I was taken off of the Interferon. Dr. Dave saw no benefit anymore, just agony. The prerequisites for admission into the study were that a candidate would have received Interferon for six months without any response or reduction in their Leukemia. I only lasted less than five months before I couldn’t take it anymore. This worried me so much. Would I be ineligible now? No matter. The call came in a few days later. Dr. Dave received word from his long time colleague, Dr. Carol Miller. Dave had been blowing up Dr. Miller’s phone for months. Constantly contacting her with pleas for my entry into her group. His last plea worked. He told her that she was my last hope. That the Interferon was useless and harming me too much. That I had two little boys that were going to lose their Dad. That I had suffered too much and he really needed a favor here. I guess she caved. She only had so many spots available. So many requests. I would be receiving a call from Johns Hopkins University Cancer Center in Baltimore shortly. My Mom was right. Keep the faith. I was in. The Miracle drug was in reach. I just hugged my wife and my boys. And yep, I cried. A lot.

Next up: This is Good Shit

When we returned from Disney and the horrible heat, we needed a vacation from our vacation! I was so happy though that the boys had a great time. For their ages, six and four, they were pretty wise to the situation at hand. Wise beyond their years from watching their Daddy go through so much pain and trips to the hospital, emergency rooms, etc. Sad to say, but they were used to it.

I knew it wouldn’t be long until I would need to be back in the ER or an extended hospital stay. I was losing so much weight because of the awful sores that were overwhelming the insides of my mouth. Every piece of food felt like sharp shards of glass eviscerating the linings of my cheeks. Pusy, bloody, beyond painful, the mouth washes and antidotes meant to ease the pain were useless. Even drinking fluids was a nightmare. I was dehydrated, sullen and falling apart. My body was in a state of perpetual Interferon flu. Headaches, stomach upset, hair falling out and terrible diarrhea. I lasted about three more days until I actually collapsed and was rushed to the ER in a state of delirium and intense pain. I needed IV fluids right away along with painkillers for my mouth and head. After I was stabilized they had to transfer me from Abington hospital to my homebase Hanahmen. Dr. Dave couldn’t wait to see me. I was a freaking mess.

It was time for a very serious conversation. The Interferon was not working for me. Rather than help me it was hurting me. There was no sign of change in my disease status and my white cell counts were out of control. Approaching 200k the CBC hit a new record for me. Another Bone Marrow aspiration was scheduled immediately to check the Blast situation. We were getting so close to the end of the line. I asked Dr. Dave in a very emotional state,”Am I going to Die?” He looked at me, staring at me and processing my question. He put his hands on my shoulders, looked me in the eye, and said..”I Promise, I Am Not Going To Let You Die…You Have My Word”. This was some serious shit. No big smile, no uppity attitude and no bullshit. Serious, sincere and heart felt. It was really what I needed to hear. He gave me some strong stuff so I could sleep. Tomorrow was a big day.

I was being fed through a tube at this point while loads of antibiotics were being administered to fight the Thrush and sores in my mouth and get me stronger. My morning doctor visit was amazing! Nick and Joe came in dressed in caps, gowns and masks, announcing themselves as my doctors for the day. I really needed that. I hated for them to see me like the state I was in but sadly they were used to it. They were there to make me better. They did a wonderful job. It took me over a week to get myself in shape to go home. Still injecting Interferon, still waiting for the Golden Ticket, still full of hope. I knew how bad the situation was. I’d seen the downward spiral of Leukemia patients in their last few months. It was a horrible scene. Would this new drug save me? Please, please, please… I can’t take much more.

Next Up: Great News!

Everyone who has ever been to Florida in July and August knows how oppressive the heat there can be. Everyday, up to 100 degrees and humid. The afternoon thunderstorms last generally a few minutes and cool things down a bit. Just a bit. Our second trip planned to visit Mickey was the first week of August, 2000. When we planned the trip about six months earlier, we hadn’t any idea of what condition I would be in. Hopefully, the DLI treatment would have worked and the trip would be a welcome celebration of good health and happiness. This wasn’t the case though, as you know, and it would be a rough go for me. We needed this trip and my boys needed a break. It was on.

We would be flying into Orlando and staying in Disney at the Grand Floridian hotel for four days and finishing the last three at Aunt Michele’s for a visit. The boys would be flying for the first time and were so excited to see Mickey and Company. Our last trip, if you remember, was so hard. Joey was still in womb and Nick just 2. My diagnoses of Leukemia the day we left put a huge damper on the whole trip. Here we were again. Four years in the future and back in the same boat. And I was sick. Really sick.

The flight was uneventful other than the boys really enjoying the experience. They thought it was so cool. We had a shuttle to the hotel and got to our rooms a tired bunch but ready for fun. It would be a great week! The first day out we enjoyed breakfast with the characters. Nick and Joe loved it. Mickey Mouse pancakes and Whipped cream! Mmm! It was off then to see the sights and ride the rides. After about an hour, the heat started to drain me. I was having fevers daily for a while now and the heat was not helping the situation. I still was having a tough time eating with the awful sores inside my mouth. I had lost a lot of weight too, the Interferon was taking a huge toll on my body. I toughed it out for about three or four hours before we had to go back to the room so I could rest. Dinner would be in another themed restaurant where Joey met his match…the Queen of Hearts! She scared the hell out of him! Pretty funny. We took some family photos and retired early. The next day was like 1000 degrees! The heat and humidity were just too much for me. My memory of that day was of leaning on the double stroller we had rented to help us navigate the boys around the park. The rental stroller was wide, sat two, and luckily, strong enough to carry my body weight. I was thinking, “Please just let me get through this day for my boys”. I was literally passing out behind the stroller. Hanging on for dear life. I couldn’t make it anymore. Lor alerted the Park security who got me to the Disney Park Infirmary as quickly as possible. What else could go wrong. I was dehydrated and weak from the heat and really not up to the task. My condition was deteriorating day by day. They gave me fluids and contacted my doctors in Philly to coordinate and be aware of the situation at hand. This process played out for the next three days. Get up, breakfast, hit the park, do rides, see the sights, hang in as long as possible and head back to the Infirmary for more fluids and medication. Lor and the boys were wonderful. We did our best to have a great time. I felt so bad inside, my grief was well hidden yet overwhelming. I couldn’t stop thinking that this could be our last vacation together. I knew my blood counts were out of control. I knew that the Interferon was just a temporary fix and was not working at all. I had to keep going and give my boys a time with me that they would always remember. “Alright guys…Let’s go have Dinner with Goofy and Pluto”!

Uncle Ed and Aunt Michele picked us up on Thursday morning to head over to Lake Mary to spend the weekend by the pool and let the boys relax with their boys Aj and Max. I would get some much needed rest and a respite from the heat. Lori would get time to hang out with her friends and enjoy a few days of normalcy. She needed that badly. Poor Michele and Ed had to entertain us while we were in a worse situation than the last time we visited. We all made the best of “It is what it is” and enjoyed our time together as did our boys.

It was time to head back. The week went so fast considering all of my issues but I needed to get back home. I had follow up bloodwork that needed to be done and the side effects of the Interferon were getting unbearable. We made the trek back home and I felt so fortunate to have made the trip with my family. Memories that I hope my boys would cherish forever. I still had a ton of fight in me though. It was the fourth month of being on Interferon injections. Two more months to go after August to be eligible for the new drug study. Still no acceptance yet. I’m so scared.

Next Up: Collapse

So my wife mentioned to me that my last few posts have been repetitive. I agree. The period between July of 1999 throughout 2000 had to be one of the most gut wrenching, mentally and physically demanding and heart breaking time of my life. Again. I’m sorry if it just seems like bummer after bummer. It was. Especially after I began injecting the drug Interferon.

Interferon Alpha was the standard treatment for CML, sans a bone marrow transplant, from 1980 to 2000. It was the only drug at the time that had a somewhat positive reaction towards suppressing the cancer. It was no cure for sure but bought precious time for those who would eventually succumb. To be able to become a candidate for the new drug STI- 571-FDA trial in its second phase, you had to have tried the drug Interferon for at least six months with no positive change in the status of your CML.

Dr. Dave was feverishly trying to get me on the list for admittance to the trial. Many others too. My Dad was petitioning business execs, State Senators, you name it to jump on board and make a case for me. Many letters were written and phone calls made. This was crunch time. The hospitals included in the study that was to begin soon were in New York, Houston, Chicago, Baltimore, Seattle, Los Angeles and Boston. Not Philadelphia. It was a mad scramble for life. The last miracle for so many. Including me. But first, before anything, the Interferon injections had to begin. In my last post, my last appointment, I was taught how to use the injection pen. The fat of my stomach or my thigh was the best site to start. Every other day. I quickly became compassionate to the Diabetics of the world. This really sucked. Not only did it really suck to inject yourself, as time went on so did the side effects.

Meanwhile, the results of my bone marrow aspiration, Chimersm and PCR tests were in. The Chimerism showed that my DNA was becoming dominant again over my brothers. This was bad. A full takeover of my own marrow over my donor transplant would accelerate the cancer into what is known as a Blast Crisis. At that point there was no coming back. No cure. No chance. My PCR results were equivalent as well as my marrow biopsy. No good. Disheartening to say the least, this point in my journey was one of the worst. But wait…it just keeps getting worse! The side effects of this drug were awful! I mean terrible! It started with the Nausea. Then the chills. Then the fevers, the mouth sores, the rash, the extreme fatigue and the diarrhea. Relentless.

Month after month through the spring and summer, one month, two months, three months….it didn’t get any better. I was losing weight, strength, hair and hope. And my blood counts? Well, they were climbing at a frenetic pace. 90k…100k…150k. My work. What was that? I could barely get up everyday. I struggled to go into my business every day. I had to be careful of infection too. What was the point of this suffering? Why couldn’t they just let me in the study? I was mentally and physically exhausted beyond the point of all else. You know what though? I was approaching my fourth month…August. Do you think this would stop me from our planned trip to Disney! No Way! Never happen! Nothing was going to stop me from this precious trip with my boys. Especially Interferon.

Next Up: Florida in August

I knew that this appointment was going to be a doozie. I’m already wrapped like a Cobra ready to strike. So much information to take in along with the infamous bone marrow aspiration. Lost count at this point but whatever. I’m in a bad place. No sleep, horrible stress and losing hope. Get me through this day. I need a little something…a little good news.

I hit the scale…180 lbs. I sat in the blood draw chair and got the usual four to five vials of my B Positive/ 0 Positive blood drawn for my Chimersm, PCR, CBC, Etc…tests. I did the perp walk to a large exam room and assumed the position on the exam table. Now I waited. After a few minutes, a big, husky, young Persian looking Doctor came in. I’d never seen him before and after introducing himself, he let me know that he would be performing my bone marrow aspiration. Well buddy, that would be my decision. Dr. Styler was the only other doctor than Dr. Dave to attempt one before and he absolutely killed me. Dr. Terzian actually performed my very first but I didnt know what to expect at that time. So, Dr. Dave was the man, not this guy. The new doctor told me that Dr. Dave would be delayed and asked if he could begin the process. Ok then. I’ll give you a shot. One shot. I assumed my usual position, curled toes, hands wrapped around the front of the table and clenched teeth. It started out ok but went downhill very quickly. He was definitely a rookie and his inability to pierce my hip bone was getting ugly and beyond painful. I stopped him after the pain became unbearable and requested Dr. Dave immediately. The wait seemed like forever. A huge canula needle impaled halfway into my hip bone. Blood running down my ass and leg and pooling under me. It seemed like forever. He barged in, took over the situation and Dr. Dave finished the job like the pro he was. The nurses cleaned me up and prepared me for my next move to the consult room. New gameplan time.

As I waited for Dr. Dave to clean himself up and gather his thoughts, I languished in the fact that this new resident doctor had rendered me almost immobile and in some major agony that would last for hours and my long drive home. I wasn’t too happy. I was tired. The next conversation I have will determine my outcome. Will I stay or will I go now? What’s my odds Doc? Then came the usual knock on the door. “Keenan.”..

“Well, your white cell count is up to 80k. Highest ever eh”. Thanks for the NOT GREAT news Dave. What’s the plan? ” Ok, there is a new drug called STI-571 or Gleevec that just finished its initial FDA study 1 with great results.” ” Phase 2 starts in June across the country with only about 400 participants being carefully selected to be a part of the study”. “I am in contact with several programs and lead doctors holding the trials around the country trying to get you in one of the study groups”. The only caveat of this study was…that you had to have been unable to have a positive reaction to treatments after using Interferon A injections for six months straight to try to beat back the Leukemia. This meant that I would immediately have to begin injecting myself with this awful drug. Interferon had terrible side effects and only a slight chance of working. I would have to use a special needle to inject the drug into my stomach or thigh every other day. A terrible prerequisite for admission into the FDA trial. But my only chance for survival at this time. I took my first shot right there in the office. A pen like instrument that was simple to use but was still a needle. It burned going in. My six months started right now. Let’s see if we can turn this shit around. Let’s see if we can get in this new FDA program. Let’s see if I might get lucky. Really lucky. Please. I need a break.

Next Up: Interferon A

So, as I was expecting, the results of my bloodwork at the end of the three month wait period were not what we expected. This was the culmination of two Donor Lymphocyte Infusions over a seven month period. The collaboration of all to stop the proliferation of the Leukemia from aggressively attacking my body. A valiant effort that fell far short of expectations. My White Cell counts were rising… Rapidly. Ok, Dr. Dave… Now What?

This failure was very disheartening to me. We were approaching the fourth anniversary of my original diagnosis. It was panic time as far as I was concerned. How could this be possible. I had so much faith in the process, so much faith in my doctors, so much hope in my heart and my mind. There were these two beautiful little boys counting on me to pull through for them. Nicky and Joey were too young to understand the dire situation unfolding before their eyes. It was beyond my comprehension four years ago that I could possibly not see my beloved boys grow up. To be there for them. My Dad was such a positive and guiding influence in my life. He always had my back. Especially now. He always took care of me no matter what the situation. All of my siblings could count on that too. I would emulate that role model. My boys would also be able to count on me no matter what. I was so fortunate to have known this love that my current situation made it all the worse in my mind. As bad as I felt four years ago, I felt ten times worse now. I felt hopeless. I needed to live…not leave.

Dr. Dave had his office call me to set up an appointment for the second week of May. He would need to perform another Bone Marrow aspiration to get a better in depth scenario of the extent of my disease. He also wanted to discuss information he had received about a new drug that was in its first FDA trial. A drug that was showing promising results. A drug that could possibly save my life. At this point, I was up for anything. The window on my world was closing quickly. Aside from this new miracle drug, the only other option to treat me at this point was another Bone Marrow Transplant. I wouldn’t survive a second one. That I knew.

Next Up: The Appointment from Hell

It was now the end of March 2000. I had just reached the end of my second month post my second DLI procedure. The blood and PCR results that were coming in were not very encouraging. This was getting really scary. There were no great answers for the lack of progress. The bottom line was that the standard three month waiting period for a positive reaction for the DLI procedure was only four weeks away and we were going backwards.

Lori and I were planning a vacation to Disney World for August. A chance to get in some away time and since Joey was now going to turn four, he would get his first chance to meet Mickey. This would be my next goal. A family vacation to ease the stress of our current situation. The boys were so excited. This trip to Disney would hopefully be much lighter and happier than the last and we would be staying inside the park. The planning was complete and all that was needed was to get this transplant reignited and my health back on track again.

Dr. Dave was of the opinion that my body needed that one more month, the extra thirty days, to get the full effects of the Donor Lymphocyte Infusion. My marrow would hopefully come around and bounce back. He was holding off on completing the last Chimerism until the full three months had passed. The test that would see if my brothers DNA in my marrow had taken full control of the relapse situation and we were back on track to a full state of remission. The ultimate and most important goal in our plan. I was of the opinion that I was screwed. Everyone around me, my full support system, were holding out hopes for the best for me. I appreciated the support so much. My journey was going on four years now and I was getting very well versed on the results of the various tests that predict the outcome of my treatment. I knew that Dr. Dave was always the optimist. I also know how I felt. How my body was reacting to the procedure or not. I knew in my heart that the next thirty days were going to result in a huge disappointment. The wait would be agonizing. Mentally exhausting. We’ll have to keep the faith though. My beautiful babies need a break. They need their Daddy. Mommy needs a break too. Seriously.

One more thing to do now. Nick loved the boy band N’sync! I was driving down I 95 on a Thursday headed to Sansom street for my weekly jewelry run and LAAA! A billboard showing that the band N’Sync were going to be playing at the Spectrum in South Philadelphia! On Nick’s 6th birthday! March 26th! I called Lor for the ok and then Ticketmaster for two fabulous tickets, center stage! Here we go buddy!

We got dressed up nice and sharp for the show and Nick was lookin good! What an energized crowed of 50,000 insane five year old to fifty year old women and girls we were surrounded by! We were like the only guys around for miles! The concert started with a relatively unknown performer named Pink…yes PINK! SHE WAS AWESOME! Nick was a little uncomfortable with the loud music but hung in there through Pink’s set. It went all downhill from there. N’SYNC hit the stage at a billion decibels. Nick freaked out! I covered his ears with muffs I had brought but that only helped little. He screamed and cried to go home, but for $200 bucks a ticket, that wasn’t happening. After surviving “Bye,bye,bye”, “”It’s gonna be me” and “I want you back”…Justin Timberlake and his crew broke out the tear jerker “This I promise you”. The crowd mellowed and Nick calmed down as the words softly echoed through the crowd.”And I will take you in my arms , and hold you right where you belong, til the day my life is through, this I promise you, this I promise you.” I held him tight to my side as the tears flowed down my face. “Daddy, why are you crying” he said. “I just love you buddy”… I told him and hugged him even tighter. These were the best of times, these were the worst of times. I had a night that would be forever cemented in my heart. And hopefully his too. Happy Birthday Buddy.

Next up: Now What?

Well, all the hopes and prayers and wishing and hoping were for naught. The Donor Lymphocyte Infusion had run it’s course and the Leukemia was running amok throughout my body. January saw weekly trips to the hospital for constant bloodwork and consultation about the next course of treatment. We needed to keep a close watch on how rapidly my white cell count was accelerating. The major issue with CML is that at any instant the disease can progress to what is a called a Blast Crisis. When this occurs, the bone marrow begins to turn out lymphocytes so fast that the immature cells are useless in fighting infection and begin to overwhelm the marrow. Coming back from this situation is rare and ultimately occurs in death. Dr. Dave knew this all too well and planned our next move.

The first week of February, we would return to repeat the DLI. Another full day of my brother Glenn having to go through Pheresis on the machine that would again have to harvest the white cancer free cells from his blood. Kind of rinse and repeat. After the cells were processed, I would be waiting in another room to receive the hopefully life saving infusion. Everything went as planned. It was old hat by now. I felt bad, as usual, for Glenn. It was really uncomfortable for the donor during the procedure and there was always some recuperation needed afterwards. Same for me. This was it though. If this DLI doesn’t work there will not be another. Back to the playbook. Back to the desperation that is fighting cancer and realizing that you might be losing your battle. It really fu@%#ks with your mind. This was a very difficult period for me. I could only try to keep my composure around my family and co-workers and battle on. DLI number two was in the books.

A week had passed since the Infusion and I felt pretty normal. No side effects were evident and my bloodwork results were trending positively. Dr. Dave was somewhat pleased with my first visit back. He was very positive as usual. He always was very positive. His job had to be so stressful. So many souls depending on his every move. The waiting room was always full of patients in various stages of distress. You could classify them by their appearance. You get the picture. The office staff were also very accommodating and compassionate. Their job wasn’t easy either. Dr. Dave gave hope to one and all. Until he couldn’t. For all of the patients he saved there were many he could not. The cycle of life. Here I was again. Depending on his every move, depending on his expertise and depending on him.

Weekly appointments would be my life now for the next two months. There wasn’t much to do but wait and hope for the best. Everything would play out in that time and we will see whether the second time is the charm or we’ll be back to the drawing board. I have to remain positive. Right?

Next up: March On